6 Month Post-HSCT Update

11 November 2016,I have reached the 6 month mark after HSCT!!!  May 11th was the date my stem cells were returned to me.  I share the date with 2 others, a gal from the UK and a guy from Norway.  If you’ve followed my blog since I was in Russia, you’d know that already, haha.  May 12th was the date the other 2 ladies in my group got their stem cells back, they were from Australia and Norway. As I’ve said numerous times before we were a group of 5, so 3 of us started the whole process on Monday, the remaining 2 started on Tuesday. Amazingly we all managed to collect enough stem cells in 1 day, so we all stayed on that schedule throughout treatment. And in true HSCT fashion in which everyone is different, nobody got out of isolation in the same number of days. Well 3 of us got out on the same day, but we all went into isolation on different days. So we ranged from 6-10 days in isolation I believe it was, may have been 11 days for one, so long ago I don’t remember.  I however got out after 7 full days in isolation, I still remember how amazing it was to brush my teeth after regaining my freedom, haha!  Seriously, you have no idea how amazing teeth brushing can be unless you haven’t been able to do it for a week….Hands down I think it is the thing all veterans will say was the most amazing part of getting out of isolation, sad and pathetic I know, but that is what being locked up for a week does to you.

But just for fun, here is a slideshow of pictures of me getting my stem cells put back in. (lighting was absolutely horrible in my room, so please excuse the bad quality of the pics)

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And here is a slideshow of pictures from our stem cell birthday party and some from the party the next day.  While we may not share the exact same stem cell birthday, we still were treated together and still are all sisters and brothers in this whole thing.

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So as promised from my blog post last week, I’ll be discussing quite a few things in this post. But first off lets discuss blood work.  If you’ve followed my blog throughout my post-HSCT journey you’ve seen me post my blood work results as I’ve had them done.  Initially my plan was to do blood work at 2 weeks, 4 weeks, 2 months, 3 months, then at the 6 month mark.  But then due to other things happening in the past 6 months I ended up having blood work done at various other times as well such as the 1 week mark and the 5 month mark and a couple other times in between.  It’s a good thing blood work is covered 100% by my insurance, haha! And I really do hate doing blood draws, absolutely hate it, and I really hate the fact that my local hospital uses freaking tape to attach the gauze to my arm after the blood draw, which then removes my arm hair every time I have to pull the tape off. I much preferred the stretchy stuff they used to use, but I guess budget cuts made them switch to tape.  They charge enough money, they should have more than enough to not use freaking tape, but whatever. But back to my blood work results.  I opted to display them in graph form, so you could see the important numbers and how they have changed since I’ve been home.  And then I also listed some blood work numbers from before I was diagnosed with MS and before I had any MS symptoms so you could see what they looked like prior to HSCT and then I also listed the numbers from my pre-testing in Russia and then what my numbers were in my final blood work done before leaving. So I have the dates listed for when the blood work was done and then also color coded it as well for easier reading.  One color is pre-MS, next is when I was in Russia and then finally the last color is everything since being home.  Normal averages for each of those categories is listed at the top of the graph in parenthesis. Here’s the graph:

Date

WBC

 (3.8-11.0)

RBC

   (3.5-5.5)

Hemo-globin

(11.2-15.7)

Platelets

 (150-420)

Neutro-phils

 (1.9-8.0)

Lympho-cytes

 (1.4-4.8)

5/21/2014

5.8 4.28 13.7 187 4.33 1.10
11/27/2014 7.0 4.20 13.0 235 5.03

1.55

2/19/2015

6.2

4.59 14.3 229 4.65 1.10
4/26/2016 

(Arrival)

6.02 4.3 13.5 180  

1.50

5/24/2016

(Leaving)

7.46

3.4 11.1 338  

0.50

6/01/2016

 (Day +21)

4.0 3.58 11.6 377 3.05 0.40
6/05/2016

 (Day +25)

5.6

3.55 11.7 335 4.33

0.47

6/07/2016

 (Day +27)

5.9 3.83 12.3 378 4.61

0.51

6/21/2016

 (Day +41)

6.0 3.80 12.4 200 4.83

0.64

7/21/2016

 (Day +71)

4.2 4.04 12.9 214 3.15 0.58
8/18/2016

 (Day +99)

5.1

4.08 13.2 199 3.93 0.61
10/02/2016

(Day +144)

4.88 4.32 13.4 184 4.07

0.43

11/09/2016

(Day +182)

 5.21 4.43   14.0 195  3.98   0.65

So as you can see on the graph all my numbers are in the normal range, minus the lymphocytes, that number can take 1-2 years to get back to normal.  And what is normal you may ask?  Well they consider normal to be what your numbers looked like pre-HSCT, so for some people that number is at the low-end of the scale, for others it is on the high-end of the scale.  Also some people have lymphocyte numbers really spike after HSCT and then massively drop afterwards, it’s very individual. As you can tell by my pre-HSCT lymphocyte numbers mine have always been on the very low-end of normal and even below normal levels at times, just how my genetics work.  And then I’m really not sure how they come up with the actual averages for that anyways as I’ve seen people in other parts of the US that are similar aged that their charts say 0.70-4.0 is the normal range, so I have no idea how they come up with that number, but if going by that I am getting closer to the normal range, and given that my numbers pre-HSCT were not much higher than 1.0 I’m thinking 0.70 could be a good estimate for the low end of the range for me.  And in looking online you find all different averages, so who knows.  At the 6 month mark my blood glucose levels are also finally at my pre-HSCT levels which are on the lower half of the normal range.  The only levels now that are still a bit higher than they should be is my BUN and creatine levels, but because of the large doses of steroids we received that can take up to a year to really get back to the normal range according to most doctors.  But they are literally right at the cut-off for the high-end so not really a huge deal, and with those numbers too it also can depend on if you are dehydrated at all during your blood draw and all of last week I really lacked on drinking water and probably was somewhat dehydrated all week long, back to drinking more water! I always struggle with that in the colder months of the year. But regardless, my GP, neurologist and Dr. Fedorenko have always been happy with my numbers and say that for me they are right where they should be.

So now the part of this post that people are probably most curious about, how am I doing 6 months after HSCT…  What were my MS symptoms pre-HSCT, how have they changed after HSCT and what are they like currently…  For those who have not followed my journey, my EDSS score prior to HSCT was 1.5, I was diagnosed with RRMS in February 2015 and had symptoms since May 2014, my MS was very aggressive in my C-spine, I was relapsing every 3 months even on DMDs. My second major relapse really spiked my EDSS score for a while and I pretty much had to teach myself how to walk again and struggled with many things for months. So without further ado, here’s a rundown.

Vision Problems/Optic Neuritis:  So pre-HSCT vision problems were one of my biggest issues.  I was diagnosed with optic neuritis in both eyes (left eye being far worse) which they say is super rare, but in talking to those with MS, seems pretty freaking common. Pretty much all the time I had very foggy/blurry vision in one eye or the other.  Rarely was it both eyes at once, but basically I could barely see out of one eye or the other at all times.  I also had issues with getting my eyes to focus together, it’s hard to explain that one exactly, but those who have dealt with that, know what I mean.  During bad flares of that I also would have excruciating eye pain. While I was in isolation in Russia after getting my stem cells back, my vision went 100% back to normal.  No fogginess and my eyes had no problem focusing together anymore.  At the time it was hard to say if it was all the steroids causing that or if it was the HSCT procedure.  Well since being home my vision has been perfect in that regards, no issues at all.  At the 6 month mark, my vision is back to normal.  The only issue I do still have with my eyes that will probably stick around is floaters in the eyes, especially when in bight light, but I’m fine with that, I’m just happy to see clearly now.

Cog Fog:  Pre-HSCT this wasn’t a huge issue for me.  It was an issue, but not one that majorly impacted my life. I had a lot of times when I didn’t feel with-it, where I would have major problems focusing, would often forget words and completely forget what I was saying.  While in isolation in Russia one day it was like the fog lifted from my brain, I could think clearly again, really an odd feeling when that just happens suddenly. Since I’ve been home that has come and gone at various times, usually it happens when I am overly tired or sick.  But at the 6 month mark that issue has pretty much gone away. But on days when I am lacking sleep it does pop back up.  Caused by existing damage in the brain that may or may not ever go away.

Arm Weakness/Leg Weakness:  Pre-HSCT this was a major issue for me at times, especially when it came to arm weakness. I struggled to lift my youngest child who weighed less than 20 pounds, struggled to move things around and had no grip strength in my hands at all.  Literally if I would try to grab onto monkey bars and hang, my hands and arms would give out and I would fall to the ground. My legs often would give out as well and I’d fall over.  I couldn’t walk for long distances because my legs would just give out.  Horrible for a person like me who is super outdoorsy and loves to hike. I could not run at all, literally if I tried, I would fall on my face, my legs couldn’t handle the force of hitting the ground when it came to running. During HSCT in Russia this really came out in full force with the chemo, I really struggled to push open the door to escape the hallway to get outside, it also continued after I was out of isolation.  After I got home this gradually got better.  I also did push myself and exercised to try to improve this aspect.  My goal pre-HSCT was to be able to get across a set of monkey bars again without falling down.  I managed to accomplish that about a month or two ago and could even jump down from them and land on my feet and walk away without my legs giving out and crashing to the ground, I posted a video on my facebook page of that.  I also am able to run again.  I am not comfortable running fast, but I can run.  So at 6 months out I’m doing pretty good in regards to this.  There are still good days and bad days when it comes to this, I’m still on the recovery rollercoaster, so some days running would probably not be a good idea.

Dizziness: Pre-HSCT this was an issue that I battled with off and on.  Some days it was really bad, other days it wasn’t there at all.  Temperature changes really made this issue flare up for me.  Post-HSCT this issue has pretty much gone away for the most part.  It does pop up from time to time, usually when I’m overly tired or am not eating very healthy.  Following a diet of not eating much in the way of processed food really seems to help with this issue.

Balance Issues/Vertigo: Pre-HSCT balance issues were a big problem for me, especially during relapses.  But even on good days my balance really sucked, I couldn’t walk a straight line and I couldn’t balance on one foot at all, attempting yoga and doing many types of exercises were out of the question because I would constantly fall over when trying to do certain poses. This was depressing for me because in the past I had amazing balance, so not being able to do much without falling over really limited my past activities.  Vertigo prior to HSCT was really bad during relapses and was off and on otherwise.  It didn’t really affect daily life too much for me, but a lot of times in the evening when I was tired, it would really come out and I’d have to just lay down because everything was spinning.  Post-HSCT my balance has greatly improved, I doubt I’ll ever have the amazing balance I once did, but I can now balance on one leg and at least do yoga poses and exercise without falling down.  I’m not as concerned about getting off-balance when walking and falling over like I was pre-HSCT.  Vertigo isn’t really an issue for me anymore, sometimes when I am massively over-tired or sick it will come back, but considering it isn’t really an issue anymore.

Heat Intolerance/Cold Intolerance: Issues almost everyone with MS faces. I didn’t have MS all that long before undergoing HSCT, so I really only had 1 pregnancy free summer and 2 winters with MS to base my experiences on, but this wasn’t as big an issue for me as it is for some people.  I live in an area with temperature extremes, 100+F temps in the summer and way below freezing temps in the winter. The heat bothered me most when the temp was 90+degrees outside and when it would get 100+ it often would immobilize me.  Days like that would make me not be able to really do anything at all, other than the bare minimum needed to survive. In the winter months, the cold would make me have bad spasticity and muscle tightness in my legs where it would make them feel super heavy and hard to move.  So it was a lose-lose when it came to seasons, spring and fall were the best.  Post-HSCT this has seemed to improve.  We had another hot summer here and there were only a few super hot days where I found it hard to function, but had no problems being outside in the sun and enjoying life, things I could not do the year before.  As for cold weather, we are just approaching that season now, but so far the leg muscle tightness and heaviness has not been as bad as in the past.  It is still there at times, but not as problematic as before, we’ll see how things go as winter progresses.

Fatigue: Everyone always asks about fatigue, which I think is the biggest issues with MS.  Pre-HSCT fatigue wasn’t a huge issue for me, usually when it would occur it would be in the middle of the day when I just couldn’t function for a while, then suddenly I’d be back to normal again for the rest of the day.  But I could never get enough sleep.  It was a struggle to stay up till 10pm and I’d often go to bed earlier than that, and then in the morning I would have slept in super late if I could have. Post-HSCT this issue hasn’t been too much of a problem.  I’m still in the rollercoaster stage with ups and downs, but I don’t have all too many days where I feel fatigued during the afternoon, seems like on days that it happens I’m overly tired or we have some crazy temp changes going on outside. And as for sleep at night, I no longer have issues staying up late at night, I often stay up till 11pm or midnight and get up around 7am. In fact during the presidential election I stayed up till 2:30am watching it play out and had no problems with that.  Given I was a person that pre-MS would only require 4-6 hours of sleep a night, it appears I’m getting back to that routine, although I do try to get 6-8 hours a night.  So I am no longer worthless every evening and I can actually enjoy some free time after the kids are in bed.

Numbness/Tingling/Pins & Needles Sensation:  Hands down this was one of my worst issues pre-HSCT.  For those who have followed my blog you know that my MS was aggressive in my c-spine, I have a large lesion load there and I have one huge lesion that almost covers my entire spinal cord, when diagnosed initially my neurologist stated that I was lucky that this lesion didn’t paralyze me and he said he doubted I’d be able to walk normal again after I recovered from that relapse, just because it is in the worst spot possible to have a lesion in the c-spine. After several months I was able to walk fairly normal again, but the one issue that constantly remained was numbness, tingling, and pins and needles feelings in my hands and feet.  Up until I had HSCT my feet were 100% numb, I had pretty much zero feeling in them unless I was on steroids, I constantly would crash my feet into things and horribly bruise them and not even feel it.  My hands also were mostly numb to the point where I would wear cutting gloves when using knives so I wouldn’t cut myself and I also had to be careful around hot and cold things because I couldn’t feel temperature at all. I also would often have the pins and needles sensation all around my stomach/abdomen region which was really irritating when touched by clothing.  Post-HSCT these thing have improved somewhat.  Dr. F in Russia even told me the chance of ever regaining full feeling back in my feet probably would not happen just given how bad my lesion is and it’s placement. I do have almost full feeling back in my hands, I do not know if it will ever come back completely, but I have enough feeling to at least be able to cut things safely, feel heat/cold and feel textures.  As for my feet, I have regained some feeling back in them.  I can feel pain if I crash them into things and can feel things if I touch my foot on them, although tickling them gets no response out of me at all.  I really don’t know if that issue will ever improve, but I’m content with how it is. Then with the pins and needles feeling around my stomach/abdomen it isn’t as bad, but it does come and go periodically.  With all the symptoms they do periodically worsen at times and then get back to what I’d consider their new normal.  It’s much like before you have HSCT, you have the damage there and any little thing can make the issue flare a bit, lack of sleep, sickness, stress, etc.

Lhermitte’s Sign: For those unfamiliar, it’s common with MS.  You bend your head forward or a certain way and you have an electric shock feeling shoot down your body and through your limbs, it can be painful for some, but usally it’s just more uncomfortable.  This was an issue pre-HSCT that I had most of the time.  Post-HSCT this hasn’t really been an issue.  When I am overly tired or stressed it pops back up, but for the most part it is gone.  For me I don’t consider this a bad MS symptom as it really didn’t interfere with my life, but thought I’d mention it anyways.

MS Hug: Inappropriately named, as it should be called the MS Grip of Death or something similar. Pre-HSCT this issue would pop up for me once in a while, it was common during relapses, times of stress, and then sometimes it would just show up for no reason at all.  It’s an annoying symptom to say the least.  Post-HSCT I haven’t dealt with that issue at all and I’m thankful for that.

Spasticity/Muscle Tightness:  Pre-HSCT I had this issue in my lower legs a lot of the time.  I really think legs are the most common place for this to occur for those with MS. For me this was more seasonal, it happened more in the colder winter months and then also would pop up with huge temperature swings year round. I also occasionally would have it pop up in my neck. It wasn’t a life changing issue for me, it didn’t really affect my walking or life, but it did make it impossible to run and made exercising difficult and I couldn’t walk for long distances without my legs really causing me issues. Post-HSCT this issue has still popped up once in a while and stills plagues me a bit now that the weather has cooled down for the year, from seeing veteran’s discuss this issue, it seems common for these seasonal issues to continue to stick around, pre-existing damage may not repair itself so you are stuck with it. But for me it isn’t as bad as it was before, it doesn’t affect how long I can walk and it doesn’t affect exercising at all.  Only thing it really affects me with is running, while i can still run when it is acting up, I am more concerned I’d fall and hurt myself. Since HSCT this issue has come and gone when it comes to my neck, it’s an issue I’ve battled since being home, although I don’t necessarily think this is related to the MS anymore, but more related to have the neck line in, many people have these neck issues after returning home, and for most it subsides after a year or two.  And it isn’t caused by the neck line itself, more just because of how you position your neck when the line is in, and for women especially and those with less neck muscles, the issue can be worse.  So hopefully that will eventually go away, until then I occasionally use muscle relaxers and do a lot of stretching and that does solve the issue.

Bladder Issues: An issue not talked about much publicly by those with MS, because who wants to discuss such a personal issue with others, well apparently except me at this moment, haha.  I did not have much in the way of bladder issues before being treated for HSCT, but it was there. I kind of had it on both ends of the spectrum, I’d had times when it was a struggle to actually get myself to pee, then there would be other times when it would be a rush to the bathroom because I knew I had to pee and some would come out regardless. I’d also have bladder spasms at times which makes you feel like you have an UTI when you really don’t. The joys of MS affecting your bladder. Post-HSCT I haven’t really had any issues in this regard, sometimes I still do have bladder urgency, but never to the point of thinking I was going to piss myself.  I do still have some bladder spasms at times, but they are far and few between. This issue is one that does seem to improve for many after HSCT.

Endometriosis: This is not caused by MS, but since there is a strong correlation of those having MS also having endometriosis, I thought I would mention it. Pre-HSCT my endometriosis pain was horrible, especially when ovulating, during my period and a few days pre and post period, then also it would randomly pop up throughout the month. My pain was severe at times and really annoying. Post-HSCT I have had my monthly cycle return after about 3 months and since my hormone levels returned to a more normal level I have not really had much in the way of endometriosis pain.  I still can tell when I ovulate as there is slight pain, and periods are probably a bit more uncomfortable than they are for a regular person, but the pain has subsided for the most part.  I assume it’s mainly because of muscle tightness occurring in the abdomen because of MS and afterwards if that issue is resolved there is less pain happening.  I really have no idea, but for me the pain has improved, so I’ll take it!

Anxiety/Mood Swings/Headaches: I think this really comes down to where your lesions are in your brain if you have these issues or not. For me after being diagnosed with MS I’d often get bad headaches that turned into migraines.  Not super common but would usually have one a month.  I also would have killer mood swings for no apparent reason.  Then after a relapse in September 2015 I started having some anxiety attacks where my heart would go crazy and it was quite unpleasant. Post-HSCT I do still have some of these issues.  I do occasionally get headaches but most are related to being dehydrated so I don’t think they are MS related. Mood swings do still happen at times, but they aren’t as common or severe as before.  And then anxiety issues do still pop up for me, not to the extent as pre-HSCT but they do happen and I don’t know if that is related to MS lesions or the chemo.  As I’ve stated in previous blog posts anxiety and depression are very common side effects of the HSCT treatment itself.

Back Pain: This is an issue that many doctors and neurologists claim is not related to MS in any way, shape or form.  I disagree.  And back pain seems to be a symptom many with MS have. Throughout my life I did occasionally have a bit of back pain after working certain jobs, etc. but it was only after I was diagnosed with MS that my lower back pain got so much worse.  At times it was excruciating by the end of the day.  My back muscles were so tight that no amount of massage would help them at all. I assumed it was just something I was stuck with.  While I was in Russia in isolation I noticed one day that my back pain was gone.  I assumed maybe it was because of the beds there or how I was sleeping, but the pain continued to stay away after I got home. Now 6 months later I rarely have any lower back pain at all and my muscles there are not nearly as tight.  For me I think that the MS was causing my back muscles to get super tense and caused me horrible pain.

Swallowing Issues: Back to my pesky large c-spine lesion causing me issues. After being diagnosed with MS I started developing some swallowing issues.  Basically where it felt like there was always a large lump in my throat that wouldn’t go away.  It would make swallowing difficult at times especially with certain foods. This wasn’t always an issue with me, it would show up for a few weeks, then disappear for a month or two, then pop back up again. Post-HSCT that issue has pretty much disappeared.  I do have times where I feel I do have a lump in my throat, but those occasions are far and few between and I almost think that when that happens now it may be related to my acid reflux issues that I’ve been dealing with as it usually occurs when they flare up.

Nerve Pain: Pre-HSCT this was an issue that would come and go for me.  Luckily I was fortunate enough to not deal with this on a regular basis and I truly feel sorry for anyone who deals with it every day, it is brutal. But once in a while it would flare up, typically for me it would start in my spine and shoot pains down one of my arms, usually my left arm and usually would stick around for 1-2 weeks and then just disappear for a few months. Post-HSCT I haven’t dealt with this at all, so fingers crossed it is gone for good.

I’m sure I’m missing some things here, but those were the main issues I dealt with that I wanted to touch on.  Again I want to reiterate that my EDSS score was only 1.5 when I was treated and I also had only been having MS symptoms for about 2 years prior to treatment. My EDSS score is currently zero and I have had many amazing improvements.  With the exception of a few things I feel like I did pre-MS. Are results like mine common?  No they really are not and I feel people are being misled if they are told otherwise.  Many people do have many improvements after HSCT but it isn’t common to get back to feeling like you did pre-MS.  I believe a lot depends on how long you have been diagnosed, your EDSS score and the type of MS you have.  And also I think when it comes to improvements a lot depends on if your symptoms are being caused by inflammation or by permanent damage caused by the MS itself.  Damage caused by inflammation will go away after HSCT, which is why you often hear of people have amazing improvement while in isolation or right after getting home.  Even people with high EDSS scores can see major improvements after returning home, again I personally think it depends on what is causing the damage.  And in some situations some of the damage that is done is permanent and there is no reversing it.  With time and effort sometimes your body can rebuild nerve connections and you can regain some things, but the real hope here is that in the future they develop something that can regrow or repair the myelin that is damaged.

If you’ve followed my blog you also know that I had an MRI done at the 5 month mark.  I needed to have it done prior to my 6 month neuro visit and that was the date that worked for my hospital to fit me in for an appointment.  They are really booked up here, it is crazy trying to get appointments for anything. But to reiterate what I covered in that blog post.  I had an MRI done of my brain and c-spine with and without contrast.  The MRI showed no new or enhancing lesions.  Some of my brain lesions disappeared and the rest all decreased in size.  And in my C-spine my large problem lesion actually really decreased in size, some smaller ones disappeared and the rest got a bit smaller.  Which that actually shocked my neuro because while brain lesions can disappear or get smaller, it isn’t really common to hear of that happening with spinal lesions because typically they are more permanent.  So as of the 6 month mark it appears that the HSCT was a success and my disease progression has been halted.  My neurologist was very happy with my MRI results and how I was doing in general and as of now he feels the treatment was a success.  And yes my neuro is supportive of my treatment and does feel that it is the only real way that you can halt MS and other autoimmune diseases, he also fully supports the US clinical trials for this and does hope that it will get approved in the US. I would post some before and after MRI scans, but my hospital’s new computer system they recently upgraded to is still a complete mess and they have yet to actually upload any of my MRI scans into my file yet, so I have to actually request a CD of them which can take 4-6 weeks to get, ugh.  But when I eventually do get them I will do a blog post comparing some of those scans and will probably add them on here as well.

Now let’s discuss my side effects from the HSCT procedure thus far.  I guess you can say I’ve been lucky in regards to side effects.  Many people suffer from bone/joint pain after HSCT, I have yet to really suffer from that.  I did have some minor bone pain in my left arm for a while after returning home, but it didn’t really even bother me at all.  Now some I was treated with suffered much worse with this, really seems to just depend on your body. My biggest issue after returning home has been acid reflux.  It’s common after HSCT and many people take acid reflux medication for 6-12 months afterwards.  I also dealt with the hormonal issues afterwards that consist of hot flashes, night sweats and chills.  At the moment those issues aren’t really a big deal and only pop up once in a while, although I did also get my period back at around the 3 month mark, so that does seem to curb those issues a bit. Obviously I did deal with a partial DVT in my jugular vein from the neck line, which should eventually be reabsorbed by my body, that doesn’t really cause me any issues. Then I am also dealing with occasional muscle tightness and spasticity on the left side of my neck most likely caused by how my neck was positioned when I had the line stuck in it. For a while after getting home I did have a bit of what people refer to as chemo brain, but for me it wasn’t a long-lasting issue.  Other than that I really have been just on the recovery rollercoaster where your old MS symptoms occasionally flare up and then go away.  There are good days and there are bad days, you never really know what to expect from day to day. But as the weeks go by the good days far outnumber the bad days, and everyone says the first 6 months are the worst.  But many people also have a crash between the 5-8 month mark, so that could still happen.  But really I just take it one day at a time and go with the flow.

My thoughts on the whole HSCT procedure and recovery process so far….  Do I have any regrets about having the HSCT procedure?  No, I do not.  I was content with my decision going into the whole procedure, I had done a ton of research on it ahead of time and did know what to expect during the procedure and afterwards. For me and my entire treatment group the procedure was a breeze.  None of us had any super bad days throughout the whole process, we lucked out I guess.  Nothing was super painful, I never got horribly sick, isolation wasn’t that bad and time really flew by.  Recovery is far worse than the treatment.  The first 4-6 weeks home really sucks, you have no energy and you are trying to get used to living your life again that you were away from for a month.  Old symptoms can really flare up and it is not a fun time.  You really do question if it was all worth it at this point in time.  As recovery goes on things get better and you realize that it was indeed all worth it in the end, but there are days where you really do question your judgement on the whole treatment thing. Like Dr. Fedorenko says, positive attitude is key in recovery.  You always have to stay positive and as soon as you are ready to get back into working out/therapy/rehab, you do need to push yourself, especially if you have a higher EDSS score and you want to regain functions you have lost. It is not fun, but it will be worth it in the end.

I honestly cannot believe it has been 6 months since I got my stem cells back.  Time really has flown by.  I think you can ask anyone I was treated with about how fast time has gone by and they will all agree that it really flew by.  When you are given a second chance at life you really do learn to appreciate the small things in life.  You want to go live life to the fullest every single day. You want to spend time with your family and friends and you want to just get outside and enjoy life. For those with chronic conditions you do realize how quickly life can change in an instant and dammit after you have a chance to start living life knowing that you have halted your disease, you want to seize every moment you can.

Now onto some 6 month pics, including some hair pics.  My hair is a crazy mess, seriously, no idea what to do with it at this stage.  Chemo curls are ridiculous.

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And just for fun if I don’t already have enough pictures in this post, let’s do a slideshow of how my hair growth has progressed, hahaha!

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Onwards and upwards to the next 6 months!  Up until this point I’ve posted weekly blogs, now I will most likely switch to blogging more once a month for my updates, unless something comes up that I feel I need to discuss.

 

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Side Effects of HSCT for Autoimmune (AI) Diseases

Time for me to write the post I promised to write and I’m sure this will be another post of mine that gets me a lot of hate mail, such is life. Everyone on HSCT groups sees the same list of side effects being posted, and it is a great list, but it does not include all the possible side effects and never lists the bad side effects.  Now there are the armchair HSCT experts on the groups that swear a lot of these issues are not related to the HSCT procedure at all, but in most cases there is absolutely nothing else that could lead to these issues, so I would assume HSCT is the culprit, everyone can make their own decisions on that. Many people in the past have posted scientific articles that pertain to some of these side effects of HSCT on the main groups and those people have been booted from the groups and their posts deleted.  Also these side effects are massively downplayed like they are super rare, when in some cases they are not.  I personally feel everyone should be able to see what all side effects could happen, so they can take that into consideration before undergoing HSCT and also so they can be watchful of these issues when they return home.  I compiled this list of possible side effects off of 2 HSCT veterans groups, one of which I have been deleted from because one of the moderators seen that I was going to be doing a list like this and apparently I’m the devil.  I’ve been called worse. I may be deleted off the other one after this post….hard to say.  God forbid you want people to have knowledge before undergoing a major and possibly life-changing medical procedure.

So to start out I will do a list of the most common side-effects from the HSCT procedure that people may experience afterwards.  This includes everything from the list that is often posted on HSCT groups and then quite a few more.  I’d say that in reading the veteran’s groups these issues occur in a minimum of at least 25% of all patients, with some symptoms occurring in almost everyone.   The next group of side effects is less common and I’d say occurs in about 1-10% of all patients after HSCT, the percentage really depends on the exact issue.  These side effects are the controversial ones that some people say are not related to the procedure, but the patients’ doctors themselves all say they are related to the procedure, but they are important to consider because they could happen and it’s best to at least research this prior to having the procedure done just so you know what to watch for when you get home. Then the last category is rare side effects, they happen less than 1% of the time, but can and do happen, so it is something to be aware of.

Common Side Effects of HSCT (25-100% of Patients)

  • Loss of Hair (Almost Everyone)
  • Patchy Hair Loss After Initial Hair Regrowth
  • Worsening of Old Symptoms (May Stay Permanently Worse Than Pre-HSCT)
  • Dry, Flaky Skin
  • Dry, Cracked and Bleeding Fingertips/Toes
  • Joint Pain
  • Bone Pain
  • Hot Flashes
  • Night Sweats/Sweating
  • Chills
  • Problems Regulating Body Temperature (Always Hot/Always Cold)
  • Chemo Brain/Cognitive Issues
  • Overall Body Weakness
  • Muscle Weakness
  • Muscle Pain
  • Spasticity
  • Depression
  • Anxiety
  • Insomnia/Sleeplessness
  • Fatigue
  • Chemo Lines on Nails/Easily Breaking Nails
  • Diarrhea
  • Constipation
  • Abdominal Bloating
  • Nausea
  • Stomach Issues
  • Acid Reflux/GERD
  • Sore Throat
  • Mouth Sores/Throat Sores
  • Headaches
  • Urinary Tract Infections/Cystitis
  • Swelling of Feet
  • Overall Fluid Retention
  • Mild Fever (Most Common in First Month Home)
  • Rash from Bactrim
  • Reactions to Antivirals and Antibiotics
  • Upper Respiratory Infections
  • Easy Bruising
  • Dry Eyes
  • Ear Infections
  • Sinus Infections
  • Weight Gain (Often Thyroid Related)
  • Weight Loss (From Chemo)
  • Difficulty Stomaching Food (Usually in First Month Home)
  • Menopause
  • Infertility
  • Neck Pain From CVC, Nerve or Muscle Related
  • All Types of Body Pain

Less Common Side Effects of HSCT (1-10% of Patients)

  • Thyroid Issues
  • Secondary Autoimmune Disease
  • Gluten/Dairy/Lactose/Food Intolerances
  • Shingles
  • AVN/Avascular Necrosis (5-10% will develop this because of IV steroids in general)
  • C-Diff Infections
  • Teeth/Dental Issues (Breakage/Tooth Loss)
  • Osteoporosis
  • Skin Cancer (Chemo Raises Risk)
  • Blood Clots/DVTs (In Legs or from CVC)
  • Sepsis
  • Stomach Ulcers
  • GAVE/Watermelon Stomach
  • Mucositis
  • Diabetes-Type 2 (From Steroids Given During Treatment)
  • Other Cancers

Rare Side Effects of HSCT (Less Than 1%)

  • EBV Activation
  • CMV Activation
  • Death
  • ITP (Low Platelets)
  • Engraftment Syndrome
  • Adrenal Failure
  • Kidney Failure
  • Liver Failure
  • Gallbladder Issues
  • Heart Issues
  • Lung Issues
  • Other Medical Related Issues

I’m sure I am missing a fair number of side effects, but these are the most common that I have seen mentioned on the veteran’s groups.  The list is not meant to scare anyone, but it is good for people to really be able to see what could happen afterwards so they can be prepared.  These however can be hit and miss with people, some people have almost the whole list happen to them, others only have a few.  It really depends on the person.  Much like treatment itself, some people get through it with no issues at all, others get sick and really struggle with it.

I think the biggest side effect issues that really affect recovery are depression and anxiety.  Both of these issues are fairly common and can be brutal for those that have them.  If you have battled these issues pre-HSCT they probably will get way worse afterwards.  If you struggle with this at all, please seek medical help and take meds if needed.

The one side effect that is often downplayed on the groups that does occur in 5-10% of all patients after HSCT is AVN.  It almost always leads to people needing joints replaced, most frequently hips and shoulders.  AVN in general can occur in anyone who ever had a dose of IV steroids, but the higher dosages used in HSCT certainly don’t help.  I know that it can be claimed that HSCT won’t cause this issue, but given so many people need joints replaced 1-2 years after having HSCT done, it does appear that the HSCT procedure could be behind it all, especially given it has also occurred in those with PPMS who never had IV steroids prior to HSCT.  It does typically seem to happen more in older patients, although it is hard to say if younger patients may have that issue develop as they get older as well.  Pretty much everyone still is happy they have had HSCT even though they have needed joints replaced.

Also one side effect that I do have listed that is rarely discussed is blood clots/DVTs.  Now if you actually read papers on this topic you will see that about 40-65% of everyone who had a CVC for 10+ days will develop a partial DVT around their line.  For most people this doesn’t cause any issues at all and the DVT will eventually be reabsorbed by the body and it’s not a big deal.  But I had a partial DVT in my jugular caused by the CVC and it was causing me some pain so I did blood thinners for a while and that at least made the pain go away and my body should eventually reabsorb what is left of the clot. Others have had this happen as well and also did blood thinners to help with the issue.  There have been a couple of people who had more severe DVTs in their jugular veins that got infected and took longer to resolve, so if you ever have any pain/swelling in the area where your line was, get a vein doppler/ultrasound done to ensure there isn’t a major problem.  DVTs/blood clots are more common in the legs after HSCT.  Not necessarily from the procedure itself, but perhaps from the plane ride home or from sitting/lying around more after you get home from the procedure.  So if you are prone to blood clots that may be something to be proactive about when you get home.

Thyroid issues also seem to be an issue for some after HSCT.  It’s hard to say exact percentages on this because a lot of people 2+ years out now are finding out they have thyroid issues.  Basically if something seems out of whack with your body, like MS symptoms are bad and not going away, get a full thyroid panel done. These issues are easily fixed with a pill.

The rare side effects are ones that people don’t like to discuss, but they can and do happen.  One of my stemmie sisters suffered from Engraftment Syndrome shortly after returning home.  The symptoms of that mimic sepsis, but often involve rashes.  Her doctors initially treated her for sepsis and she almost died and spent a lot of time in the hospital before they figured out it was Engraftment Syndrome and treated her appropriately for that.  Treatment for that involves doses of steroids over a period of time. Her case was severe, but there have been others that had a minor case of this happen that was treated at the start and had to be on steroids for a while.  So it’s things like this that people need to research ahead of time, because your doctors at home may not understand some of these conditions and you may have to advocate for yourself.  Another patient has suffered adrenal failure from the large doses of steroids they received over the course of their MS along with HSCT.  Sometimes that goes away with treatment for others it means a lifetime of taking medication.

Like I said at the start, this list isn’t meant to scare anyone away from HSCT, it’s more to educate people on what they could have happen to them afterwards.  The rare side effects are exactly that, rare, but as people have found out they can and do happen.  None of them expected those things to happen to them, but they did. And with the common side effects it’s just good to be prepared for what you may encounter when you get home, since some of them can hit you out of the blue and you always see people posting on the veteran’s groups asking if something happening to them is normal after HSCT.  So it’s good to be prepared ahead of time for whatever may come along.

 

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23 Weeks Home (Day +175)- 6 Month Follow-Up Neuro Appointment

So this blog post is a day late, but I had a neuro appointment today (Thursday), so I held off writing the weekly blog so I could discuss that, because really the rest of my week was boring and not really blog worthy.

As I mentioned about 4-5 months ago in a blog post when I had my last neuro appointment after getting home from Russia, my neuro is 100% supportive of my undergoing HSCT.  Of course prior to me going overseas for the procedure he could not openly support it just because of rules and regulations and all that good stuff.  So while he personally feels HSCT is the only real treatment for MS, he cannot encourage people to undergo the treatment, the most he can do is discuss the US clinical trials.  Although in my last 2 visits he has joked that with all the ridiculous things some of his patients have done to try to treat their MS, he feels that if they would spend the money on a legit HSCT treatment in a place like Russia it would be money much better spent.  He seriously has had a patient pay a lot of money to get injected with something she claimed was shark stem cells, as in actual stem cells from a shark, in hopes of curing her MS.  And then he finds the bee sting therapy just downright entertaining.  He said over the years he’s seen everything under the sun being done in hopes of curing MS. He actually has done a lot of research on the HSCT procedure and Dr. Fedorenko and Russia since my last visit with him and he is rather impressed with their track record and procedure. He feels it is 100% legit and should have the same results as the US clinical trials.

My neuro is somewhat of a crude man and is known for his bad bedside manner, but I like that about him.  And in his typical style he started out the conversation when walking in the room with the comment, “so how’s your hair coming in?” There is no friendly greeting with him, haha.  So like the typical neurology appointment I got smacked with the little hammer in numerous places, did the push the leg one way and then pull it back, touched my finger to my nose with my eyes shut, tracked his finger with my eyes, etc.  He was impressed with all that and for once I didn’t have to do the walking test because he said he seen me walk down the hall to the room prior and that my walking was normal. My EDSS score is now at zero, which is what he felt it was the last time I seen him as well after I got home.  Then we got interrupted by his phone going off, and when his phone goes off it means it’s something important from the ER, so he took the call and dealt with that.  It wasn’t really a true emergency and I think he was rather annoyed that they  interupted him when it was an issue his nurse could have dealt with, but such is life.

But then we got down to business, the MRI reports and images…  My hospital recently switched computer systems and the whole system is really a screwed up mess now, it took him several tries and he had to open a completely different program in order to actually compare my new MRI results to my older ones. I have yet to find a single nurse or doctor that likes the new system, new technology apparently really sucks in this case…  But anyways he popped up the different images and found the ones to compare to each other.  We looked at all my lesions on my c-spine and brain.  As the MRI reports had noted some lesions were gone, the rest decreased in size.  While reading the reports a couple of weeks ago was exciting, it really is even more exciting to see the actual images themselves and see that some of the lesions are completely gone and that others are much smaller. That is something that many doctors and neuros claim is not possible, especially when it comes to spinal lesions, those are the ones that rarely get smaller or disappear. Needless to say he was super impressed with those results, in fact he was downright astounded as that is not supposed to happen. He would like me to do another MRI in 1 year, which would be the 18 month mark just to see how things are looking then.  As of now he feels the treatment was a success and he looks forward to seeing my progress.  I am supposed to see him again in around 6 months which will put me close to my 1 year stemmie birthday.  Unless of course something changes in the meantime, then I can drop him a message and get in sooner.

One interesting thing he did discuss in this appointment was the current DMDs on the market.  Unlike most neuros, he does not take any kickbacks from the pharmaceutical companies.  He does not push any particular medication for MS, he lets the patients choose, although he does firmly believe that the ABC drugs are the best for people to take if they do work, just because of side-effects, even though those are old-school injectables and aren’t as effective at preventing relapses as the newer oral meds. We got on this topic when he was looking at my blood work.  We were chatting about my lymphocyte counts and he felt they’d be back to normal at around the 1 year mark, it’s when his US clinical trial patients numbers got back to normal.  He brought up the medication Tecfidera, the oral MS medication that is really pushed on TV.  If you watch TV in the US you have probably seen the commercials, with an amazingly healthy women pushing the medication making it look super safe, even when they comment on the commercial that it can cause PML that typically leads to death. He was saying that many of his patients on the medication have had to stop it because their WBC and lymphocyte numbers have gotten so low it was causing all sorts of other medical issues or their risk of PML became too high.  He feels that medication is quite dangerous and was pushed through trials too quickly.  He however also isn’t a fan of Tysabri because of the rebound effect that occurs when people have to stop that medication, which many people end up having to stop it because their PML risk becomes too high. Which just goes to show that many of the freaking MS medications on the market are more dangerous for you then the actual HSCT procedure itself.

And in his typical fashion when leaving, he shook my hand and said “I don’t want to see you again for 6 months, it’s not that I don’t like you, but not seeing you is a good thing when it comes to MS, continue to beat MS.”   So that was my appointment, can’t complain.  He’s impressed!  I was hoping to post some pre-HSCT and post-HSCT MRI pics in my blog for the 6 month mark, but my hospital has yet to figure out their MyChart system online and they have yet to post the MRI images, they still haven’t even posted the freaking MRI report yet…. So it is looking like that won’t happen for a while…  I do plan to request my latest MRI reports on a CD soon, but that can take 4-6 weeks before it shows up in the mail, so not looking promising for my actual 6 month mark, such is life.  When I eventually get the new images I will try to do some before and after comparisons just because when you have MS you are told that lesions cannot just disappear or get smaller, especially when on the C-spine. I like to prove people wrong!!!

So onto the rest of my week.  As I said at the start, my week was pretty boring.  It started off just like the last week ended, not a lot of energy and still dealing with acid reflux issues. I’m taking my generic Prilosec twice a day and that has solved the acid reflux issue for now. I’m taking a 2 week course of that and hoping to keep that away for a few more months, hopefully permanently. And I’m now starting to take more probiotics as well.  A reader suggested taking a very high dose probiotic, but super high dose probiotics are not really recommended right at the start, especially if your lymphocyte counts are still a little lower.  I’m starting on a lower strain of probiotics as well as eating some yogurt and getting into eating more probiotic rich foods.  In another month or two I plan to take a much higher dose probiotic.  Many HSCT veterans do suggest taking a very high dose probiotic around the 9 month mark to get your gut health back to normal, as well as eating/drinking particular foods to try and heal the gut.

My week has ended on a really high note.  For the past 3 days I have felt amazing, like really amazing.  If I didn’t have a couple lingering MS symptoms I’d feel like a normal healthy human that never had MS to begin with, well minus my ridiculous “chemo curls” hairstyle that I have going on. Needless to say the bandanas and stocking hats are not going anywhere anytime soon… I’m not sure what happened, but I woke up one morning and just felt amazing.  Full of energy, no fatigue at all, it’s something that now seems so odd and foreign to me. According to many HSCT veterans, the 5-8 month mark is when you often feel worse for a while, they say it’s the chemo finally getting out of your system and your body figuring out it’s new normal.  Many people have 1-2 months of bad symptoms and then that is when many improvements start happening and they start feeling normal again.  Others say at around the 6 month mark is when they started feeling more like themselves again and then were good to go.  Regardless, at the moment I feel great, so I am loving it.  I do fully acknowledge that tomorrow could be a bad day and I could feel like shit for a week or two straight, so I really do appreciate the good days.

So at the moment what lingering MS symptoms do I have that are sticking around or come and go?  Lets start with my feet.  My feet are mostly numb and I don’t have much feeling in them.  Since HSCT I did regain some feeling in them, so I can feel hot and cold and I certainly can feel when I crash my foot into something now, which can be a pro or con depending on how you want to look at it, haha…  Another pro about numb feet, tickling my feet doesn’t phase me at all, can’t feel that. This is something that most likely will not go away for me, I’ve had this symptom the longest and it’s caused by a spinal lesion.  I may have improvement in the future, I may not.  But I can live with that.  Then my hands.  Prior my hands were numb most of the time, I couldn’t feel textures, hot or cold, or any of that. Now I can most of the time.  There are days when my hands have some numbness and tingling, but most days it isn’t very apparent, it is still there to an extent, but since it’s barely noticeable, it’s not a big deal.  Will this go away completely in the future?  Not sure as this is tied into the same spinal lesion that causes my foot numbness.  Then we have the numbness and tingling in my abdomen/stomach region that comes and goes.  This is a symptom that is quite annoying at times because when clothes rub on the skin, it’s more apparent than it is otherwise.  This for me is more temperature/humidity related, it’s worse in the colder months of the year.  Will it ever go away, probably not, this again is caused by that same spinal lesion. Then at times I do still have occasional cog fog and tightness in my lower legs.  That may completely go away over time or it may not.  But overall I can’t complain.  My lesion load was very high in my c-spine and those lesions aren’t supposed to ever go away, even Dr. F said damage caused by those will probably not go away.  But progression is halted and I can live with the symptoms I have.

Then this week was Halloween, my favorite holiday!  We planned to take the kiddos to a trunk or treat event in town, but we got there when it started and there were several thousand kids there is a huge snaking line, so we said fuck that and went to a couple of relatives houses instead.  And then my oldest ate a peanut butter cup on the way home, then throughout the night she vomited all over the bed, floor, herself.  Good times.  Thinking she has developed an intolerance to peanuts since the last few times this has happened she ate something peanut related. Going to have to get her checked for food allergies at her next checkup. But now that Halloween is over everything in town is Christmas related, very depressing.

So that was my week.  Sometime in the next week or two I do plan to do a blog post on all the possible side effects of the HSCT procedure, including all the ones that people don’t want to discuss publicly. Then at the actual 6 month mark, I will do a more in-depth update that actually goes into more details about how I am doing now and comparing this pre-HSCT to now.   But to finish this up for the week, here’s a couple of pics of myself from this week.  One taken with a praying mantis just for fun, the other on Halloween with one of my several Halloween related bandanas.

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22 Weeks Home (Day +168)- Acid Reflux Returns & HSCT Failure Rates

I’ve decided that once I hit the 6 month mark, +180 days that I’ll stop blogging weekly and switch to blogging each month, unless I feel the need to blog more often if something comes up.  The reasoning is that I really don’t have much new to discuss each week and as with most HSCT blogs, not many people care to read the after posts, it’s just the way it is.  I can see how many people read each post and while many of my actual HSCT posts done in Russia still get numerous views each day, the post-HSCT ones aren’t super popular, I think most people reading them are those that are also in the recovery stage and are just curious at what all to expect.  That being said, I’ll discuss my week as well as discuss HSCT failure rates, always a hot topic on the groups.

So this post is being posted a few days later that I normally do and that is because the last few days haven’t been the best for me.  Acid reflux returned with a vengeance on Wednesday.  It started Tuesday afternoon and then got crazy on Wednesday.  It was so bad that it made me horribly nauseous to the point I could hardly function and spent a fair bit of time in the bathroom dry heaving, a wonderful sight I’m sure. After popping several generic prilosec pills throughout the day it finally subsided more that evening, and then hasn’t been quite as bad the next couple days. Acid reflux is one of those things that many HSCT veterans experience in the first year or so of recovery.  For some people it is constant throughout, for others it is off and on, and then for some it can come on crazy insane and last a couple of days.  Most veterans end up taking some sort of acid reflux medication once or twice a day for the first 3-6 months, many for up to a year, and some have to continue on it afterwards.  Mainly it’s because the chemo damages your stomach lining and then goes crazy on producing acid and it takes a while for your body to get back to normal. Many people claim to have good luck with solving that issue after adding high dose probiotics back into their system on a daily basis after they hit the 6 month mark.  This also seems to be a bigger problem for those that stay on antibiotics for several months after treatment.

So my diet really went to hell this past week because of that.  Because when you are nauseous, nothing foodwise seems appealing, and trying to actually stomach super healthy food is impossible. I’m gradually starting to eat healthier food again and it appears the acid problem is decreasing again for a while.  I’m going to start taking more potent probiotics soon to try to boost my gut health.

And then with that anxiety levels have increased as well.  Which anxiety issues seem to be quite prevalent after HSCT.  I think that is caused by a number of things.  Chemo, expectations, side-effects, stress, pondering did it work, was it worth it, the list can go on forever.  Mine isn’t too bad and I’m dealing with it via meditation and trying to reduce stress.  Many people however do turn to medication for that.  Depression is not something that I am dealing with, but that is another issue that is super prevalent after HSCT.  I think these are the two most overlooked side-effects that nobody ever talks about. But there are numerous side-effects that are really downplayed in regular groups because veteran’s don’t want to scare people away from doing the procedure or those posts are deleted by moderators.  I do eventually plan to do a blog post listing all the side-effects that I’ve seen people discuss in the veteran’s group, because unlike others, I feel people have a right to know what they can expect afterwards.  Recovery is downright brutal for many people and probably half of everyone who undergoes HSCT ends up questioning whether or not they should have done it the first year afterwards because side-effects and the roller-coaster really can be just that horrible for them.  But that’ll be another post at a later date.

Now onto the topic of HSCT failure rates.  I decided to discuss this in this blog post given I seen that a member of the Russia HSCT group started a new group for people to join that HSCT failed for.  This is another taboo topic on the groups, and I know that in several groups people are deleted from the group if they say treatment failed for them and in other groups if anyone dares bring up the topic of treatment failure the post gets deleted.  But failure can happen and it does and everyone should acknowledge that before undergoing treatment because you can be the person it fails for.  It could happen to me, it could happen to anyone treated with me, it could happen to anyone, or it could not.  MS itself is a fucking mystery and for some people the treatment just doesn’t work.  Why? It’s hard to say, but most failures do seem to occur in older patients that have had MS a long time and then of course that also happens more in patients that are SPMS or PPMS.

I cannot talk for other locations, only for Russia, but in Russia Dr. F tells everyone when he accepts them for treatment how effective he feels the treatment will be for them. Numerous things are taken into account during this time, how long you’ve had MS, what type of MS you have, how old you are, EDSS score, how aggressive the MS is, etc. For RRMS the typical success rates are 80-90% depending on how long a person has had the disease.  For those recently diagnosed Dr. F feels the success rate is around 95%, it’s just what he has seen from his own experience. That is why so many people say that you should receive HSCT as early as you can in your diagnosis, the earlier you get HSCT, the better chance you have at stopping it.  Now  everyone knows that in all the clinical trials for HSCT around the world, they will not treat SPMS or PPMS because they feel it isn’t effective, although other doctors believe that it can work for those types, just your chances for success are not as high.  And that is why I assume they don’t treat those types in the clinical trials because if you don’t have a certain percent of success, you will not gain approval to have this as an actual MS treatment.

As for actual failure rates however, the data out of the clinical trials does put that between 10-20% for RRMS, so a 80-90% success rate.  Clinical trial data is probably the most accurate because they follow strict criteria.  Dr. F and the Russia facility have published papers on their past results as well that you can look up for more information and then of course Dr. Burt out of Northwestern has published papers as well. What are the success rates for other facilities around the world?  That is really hard to say when it comes to facilities around the world because none of them can actually track the results of their international patients.  Most facilities have only been treating international patients for the past 3-4 years, Mexico only about 18 months, so not really enough time to track success/failure rate.  I know Russia does send out emails to veterans every so often to track their progress for their own records, but it is up to the patients to actually respond.  And then when it comes to SPMS the success rate falls, it’s hard to say exactly what it is, but I’ve heard the success rate being between 60-80% for SPMS depending on a lot of factors.  Then when it comes to PPMS I’ve heard rates as low as 40-50% success rates, to up to 70%. Most patients treated for SPMS and PPMS have been treated in the past several years, so I don’t think there will be exact answers for that for another couple of years, given the 5 year mark is normally considered the point where HSCT succeeded or failed.

In the end what it comes down to, is that HSCT is not a cure and it does not work for everyone.  HSCT halts disease progression and it basically is like a cancer treatment where your MS is in remission, and you hope that it stays in remission for life, but you never know if something can make it come back.  Many people who have new lesions or progression after HSCT do opt to have chemo top-offs to try to put the MS back into remission.  This works for some people, it doesn’t work for many others. Some people feel the follow-up Rituximab infusions recommended by Mexico guarantee that the procedure will work for them, but that type of chemo only works on B cells and MS also affects T cells, so usually when top-off chemo is recommended when new lesions are found, it is usually a type that kills off the T cells. I do however find it sad and sickening that people are deleted from certain HSCT groups when they discuss that the procedure failed for them and it’s ridiculous that the topic cannot even be discussed on many groups without the posts being deleted, or at least heavily moderated to the point where it makes it look like HSCT is a miracle cure and the procedure rarely fails. But then again, god forbid anyone mention certain bad side-effects on groups, that can also get you banned from the group and posts deleted.

Okay enough of that, now back to me, how am I doing otherwise?  At this stage in recovery I think I’m doing pretty good. My oldest kiddo has a viral stomach bug and has puked numerous times today, so I’m hoping that I don’t catch that.  I’ve been avoiding stores during busy times to try to avoid catching anything since I’ve determined that most people are disgusting and really don’t cover their mouths when they cough and then wipe their face with their hands and then wipe their nasty hands all over everything. Hand sanitizer is my friend.

I’ve been staying pretty steady with the improvements I have had, nothing new.  Keep having setbacks with being sick or acid reflux, but such is life.  Recovery is a roller-coaster so you just gotta take it one day at a time. Then had my period yet again this past week, a bit earlier than its new normal schedule, so that brings back the hot flashes, chills, night sweats, all those fun things.  Hoping to feel better this upcoming week and get back to my healthier eating and exercise.  I guess all the ups and downs keep life interesting.  Then a couple of pics from this past week just for fun.  A sunset pic and then a pic of 3 BASE jumpers about to land after jumping off the Perrine Bridge.

 

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21 Weeks Home (Day +161): MRI Results Are In & NO ENHANCING LESIONS

So for those of you who follow my facebook page for my HSCT journey, Cat’s HSCT Journey, you already knew this as I posted about this the day after I got my results back.  But as I mentioned in last week’s post I did have an MRI done last Wednesday of my brain and c-spine with and without contrast.  My insurance will only pay for those MRI scans and not the full spine, but that’s fine with me as I didn’t really have any lesions lower in my spine, and I’d have to pay even more out-of-pocket for that, and insurance options for my county in the US suck, so everything is expensive, and it also is appearing like insurance rates in general are going up massively next year, so not even sure how I will be able to afford insurance then…But whatever, will deal with that when the time comes.

But back to the MRI results, so I ended up hearing back about them from my GPs nurse on Friday afternoon.  I was a very demanding patient and asked her to read entire paragraphs of the results, which she did to humor me, and I really think she probably had no idea what exactly she was reading with all the terms used, but I knew what to listen for, so all was good.  I really wanted the results to look at myself and they were supposed to post right away on the hospital’s new MyChart system, that didn’t happen. In fact to this day they still are not posted, but I was told that they will eventually show up there along with the images themselves, I’ll believe it when I see it.  But I called the records office at the hospital to find out how late they were open on a Friday and if they would please humor me and print me my MRI reports.  Typically you have to go there, fill out a paper, and then wait several days to 2 weeks to get the print-outs mailed to you. But the gal there ensured me that since it was just a couple of pages they would print them out for me on the spot.  So I got there around 4:45pm on Friday, they close at 5:00pm and filled out the paper and within 5 minutes I had my MRI reports.  I was quite happy the lady working there humored me and actually didn’t make me wait several days, obviously she could see how anxious I was to get these damn results.

But without further waiting, here is the longer version of the results.  This MRI was done at 5 months 1 day after getting my stem cells back and it showed NO ENHANCING LESIONS!!!! Talk about a stressful time waiting for the results. Please note that these MRI images are being compared to my last MRIs done here at the hospital which was February 2015/March 2015, so over 1 1/2 years ago and the machine is lower quality than what they use in Russia, damn USA and their not wanting to upgrade to the newest technology, ugh. The MRI machine here was 1.5T, Russia uses 3T for magnet strength.  And remember my MRIs in Russia showed at least 10 more lesions in my brain compared to my old scan here, 1-2 larger ones and the rest little tiny ones.

C-Spine (my bad area): No new lesions were detected compared to my last MRI done at the hospital. NO ENHANCING LESIONS!!! And probably the most awesome news of all, my huge lesion on my C-spine that caused me most of my issues is almost completely gone!!!!!!! The rest have all shown signs of decreasing in size or disappearing as well. Lesions in this area can paralyze you so seeing them get smaller or disappear completely is the best news you can hope for.

Brain: One new larger lesion was detected compared to my old MRI done here, but this lesion was pre-HSCT and was picked up on the Russian MRI, so no biggie, and I can pretty much tie that to my September 2015 relapse. NO ENHANCING LESIONS!!! All brain lesions are showing signs of decreasing in size and some have disappeared.

So what does all that mean???  Well it basically means that as of now my MS progression has been halted and a lot of the damage is repairing itself. It really is the best news you can hope to hear.  Obviously it takes 1-2 years for your new immune system to really take off, but typically if you do not have any progression at this point in time, that’s a good sign that the procedure will be successful.  I did email my MRI report to Dr. F and he was quite pleased with it and feels that the MS is halted.  I also will be discussing this with my neuro in early November at my next appointment with him.  The suggested protocol is to do another follow-up MRI either at the 12 or 18 month mark and then yearly after that, but honestly unless I am having new symptoms that make me question if something is wrong, I do not think I will be getting more MRIs.  It’s not that I don’t want to get them done, but with how insurance works in this country and with rates constantly going up, it is really not something that I can afford to do. Every insurance plan for my county in Idaho requires you to pay your full deductible and then 20% co-pay on all MRIs and with most low deductible plans not being offered next year, it makes it very unaffordable for anyone with a regular income, especially when you fall in the gap and get zero subsidies to help pay for your insurance.  But no need to do a long rant about how shitty insurance is here in the US, many people are in the same boat as me and already know how much the whole system sucks.

So how am I doing otherwise.  Well most of my leg muscle tightness that I was experiencing the past few weeks has gone away.  I think some was related to the car accident, other was related to the seasonal weather change and damage from the MS. Same with my pins and needles feeling around my stomach/back area.  It’s something that seems to pop up with me during the fall weather change, I think the extreme temp changes mess with my damaged nerves.  In reading the veteran’s group, seems super common.  I am having more hormonal/menopause symptoms this week as well, the standard hot flashes, chills and night sweats.  But I know that I ovulated this week, endometriosis pain told me that, and for the last few months it appears that around ovulation my hormones seem to go crazy and make the menopausal symptoms flare up.  It’s the worst of all worlds I guess, stuck with still getting periods and menopausal symptoms…  Then I’m still having some neck muscle tightness related to the car accident, and I’m taking muscle relaxers for that.

So not a whole lot in the way of improvements this week.  I have been doing much better at eating healthy.  Trying to eat a good-sized portion of fresh greens twice a day, which I really hate the taste of greens, so I do have to choke them down, salads are just not my thing….Green smoothies are a bit more appealing, but still not delicious in my opinion. I don’t really follow any particular diet, although I do still try to avoid gluten and dairy just because they tend to cause more inflammation in the body in general and I honestly do feel much better when I do avoid eating those things. I do tend to stick to a more paleo diet just because my body does better at processing those types of food, as grains and legumes have never really worked for me.  I think everyone’s body is different however and what works for one person may not work for others.  And when I see people claim diet will cure MS, it is always people who are selling books and profiting off their diet, or other people who hype a certain diet and then make a ton of money off their own side businesses, which makes me wonder if any of these people actually have MS or if it’s just a ploy to sell their stuff. And then the fact that many people who opt to undergo HSCT have stuck to a very strict vegan diet or paleo diet for years and continued to get worse, just shows that diet will not work for everyone.  I know that diet will help with symptoms and perhaps it halts progression in some people, but it certainly hasn’t cured a ton of people out there.  I do however feel that a healthy diet, high in real foods and low in processed foods is beneficial to everyone.

I’ve been trying to exercise more as well, although it rained most of last week so that made it harder to do things outside, but I’m getting more active all the time. The fresh air outside always makes me feel more energized in general, I really am an outdoorsy person, being stuck indoors is just not my thing.  Still failing at the yoga, but it really is hard to find time for it when you are dealing with the daily challenges of real life as well as children, then after they go to bed I really don’t have the energy to try and do yoga. I understand everyone says you have to make time for yourself, but really with young kids, that is just plain impossible at times, unless I wake up super early or stay up late, which just isn’t going to happen, sleep is more important for a recovering body.

So that was my week!  The MRI results were the highlight of the week!  Hoping to get even more active this next week.  And just because this post needs some type of picture, here’s a picture of my goat, Brownie up in a tree, because well goats are awesome.

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Brownie in the Tree

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20 Weeks Home (Day +154)-5 Months Old & I Conquered the Monkey Bars!!!

October 11th was my 5 month stemmie birthday!  Most exciting part of it really is the fact that my hair is starting to really grow now.  It’s about an inch long in most places and really is a mess.  I mean there is no other way to describe it. The post-chemo hair is something that just cannot be explained unless you are dealing with it yourself or know someone who has dealt with it in the past. Your hair can come in patchy, grows at different lengths, can be an odd color, and often is somewhat curly, and just cannot be tamed.  Many people opt to buzz cut their hair several times before they let it come back in.  I however am just going to let mine go, I just wear a bandana in public because I can’t tame the hair. While I do still have a few places where the hair is still a bit thin, it’s starting to really come back in and it’s fairly even over most of my head, but it is a mess.  It’s growing back the same color it was prior to HSCT, so no new hair color for me.  But here’s the 5 month picture.

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This week was really rather boring and uneventful for me.  Most exciting part was that I had my follow-up MRI for my HSCT procedure on Wednesday the 12th.  While I was going to do an MRI at the 6 month mark, I knew I’d be doing it a bit early because I needed to have it done prior to my neuro appointment in early November, and this was the time-frame that worked out for scheduling.  Seriously booking a MRI appointment here is crazy, it often is booked up for 2-4 weeks, so being able to take a cancellation slot worked for me, even though it was at the 5 month mark rather than the 6 month mark. I know everyone recommends getting an MRI done on the exact same machine, but it worked out that I was getting mine done on the Mobile MRI this time around as opposed to the one in the building. Same brand of machine though.  My last MRI done here was Feb/March 2015, so it’s been quite a while since I’ve had one done here.  My MRI in Russia at the end of April showed about 10 more lesions than my one here last year, so I’m sure the results of this one will show new lesions from a year ago, but the goal is to not have any enhancing lesions.

My MRI was done of my brain and c-spine with and without contrast, my insurance will not cover more of the spine for MS patients, but I’m fine with that as I really did not have any lesions lower on my spine, most of mine are all on the c-spine. So from start to finish it was about 1 hour and 20 minutes.  The machines they use here are not as fancy and high-tech as the one in Russia, so I doubt this MRI will show as many lesions as the one in Russia did anyways. But I got in almost on time for my MRI, really quite amazing for this hospital.  I got to walk outside the hospital and go into the semi trailer where they have the Mobile MRI unit.  Good thing I’m not claustrophobic, because there is not a lot of space in there.  Ended up with one of the same MRI techs that I had last year and he is a happy and entertaining guy so I don’t mind him. I did get a bit nauseous when they inserted the contrast dye, but some focused breathing managed to get that feeling to pass.  After it was all said and done the tech complimented me on my ability to stay super still the entire time.  I guess most people really thrash around and cause problems for them. I do not have the results of the MRI yet, supposed to get the radiologist report later this week, but could be next week before I get that.  Hard to say really.  The hospital just switched to a whole new records system on Oct. 1st called the MyChart system, so everyone is trying to figure out how to use it and it’s a mess. But hopefully they eventually post the results or that my GP gets back to me with the report.  The report is going to both my GP and neuro.

The other highlight of my week is the fact that I managed to conquer the monkey bars.  As I mentioned in an earlier post, one of my goals after HSCT was to be able to get across a set of monkey bars.  Pre-HSCT I had no arm strength at all and no grip strength.  I literally could not hang onto the bars, I would crash to the ground, and then my legs couldn’t really support me so I’d end up on my knees, not a pretty sight.  But when we were at a playground early in the week with the kiddos I decided to try to get across them, and I succeeded, so I continued to do it more and made it across 5 times.  Most awesome feeling ever.  Obviously not super exciting for a healthy person, but it was quite an accomplishment. I’m still working on arm strength and leg strength, but making progress all the time.  I also have managed to be able to run again as well, I probably appear quite uncoordinated while doing it, but I can do it, so am working on longer distances all the time.  Now I did post a crappy cell phone video of me going across the monkey bars on my HSCT facebook page, but I cannot post it here, because I have a free blog and you can only post videos if you pay.  Here is the link to my page, Cat’s HSCT Journey, you can find the video on there if you are so inclined to watch it:  https://www.facebook.com/catshsctjourney/

As for the rest of my week, I think I’m recovering well from the car accident.  Still have some neck stiffness, but stretching and massaging seems to be helping that.  I have managed to meditate almost every day, try to do some exercising every day, and the diet is improving.  Hoping this next week to really improve on that.  This is the time of the year that I am planning to stay at home a lot more and only venture into town when I need to do some grocery shopping and then it will be in the early morning hours or later at night when crowds are smaller.  I really try to avoid most people in the fall and winter months because it seems like everyone is sick this time of year, and people really are disgusting.  Nobody seems to cover their mouths when they cough and then they touch everything with their germy hands and I would prefer to not get sick.  Every year about this time we also have a huge whooping cough epidemic go through the area, so just waiting for that to happen this year as well.  Even though almost everyone in the region is vaccinated for that, the strain that occurs here isn’t prevented by the vaccine, so when it hits schools, it gets bad, and then parents drag their sick children with them when they are in town, and it’s just disgusting. I worked retail for a few years, I’ve seen my fair share of sick people and it always disgusts me at their lack of respect for others, it’s like their goal is to infect everyone else. So I try to avoid crowds in general this time of year, but really plan to avoid them this year just because my immune system is lower.

Side effects and improvements.  Well my arm strength and leg strength has really improved over the past few months.  I do have some older MS symptoms that have popped up recently, which is most likely due to the stress of the accident or because of the weather fluctuations.  But they are old symptoms from existing damage and nothing to be concerned about.  Like I said before, old symptoms will still pop up when you are sick, after traumatic events, weather changes, etc. Mainly just a bit more numbness in my fingers and feet, some leg stiffness, and then some tingling/pins and needles around my stomach and back area.  All things I’ve had before and things that seem to happen in the fall/winter when the weather changes, common amongst HSCT veterans as well, damn weather really messes with your body when it comes to old MS symptoms, for some people it’s the heat, others it’s the cold.  Unfortunately until they find a way to rebuild myelin you are stuck with existing damage unless your body decides to heal itself. But I can’t complain, the improvements are amazing.

So that was my week, nothing super exciting to discuss.  Hopefully next week I’ll have the results of my MRI to discuss.  Until then, I’ll be trying to live a healthy lifestyle.

 

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19 Weeks Home (Day +147)-5 Month Blood Work

Well I’m not quite at my 5 month stem cell birthday yet, but I did have blood work done this past week due to the car accident 2 weeks ago, but it’s close enough to call it the 5 month blood work, technically the 11th is the 5 month mark if you must know exact times. As I mentioned before I did my last blood work at the 3 month mark and wasn’t planning to do it again until I hit the 6 month mark, but because of the car accident and some doctors’ appointments after that to get things checked out, at one point in time they opted to draw blood to ensure that I didn’t have any infections. I’ll discuss all that later, but will start off with the blood work numbers since that seems to be what people care about the most.  They opted to do a complete CBC and metabolic panel. So without further ado, here they are:

WBC/Leukocytes: 4.88 (3.8-11.0 is normal range)
RBC: 4.32 (3.50-5.50 is normal range)
Hemoglobin: 13.4 (11.2-15.7 is normal range)
Platelets: 184 (150-420 is normal range)
Neutrophils: 4.07 (1.9-8.0 is normal range)
Lymphocytes: 0.43 (1.4-4.8 is normal)

Terribly exciting I know, especially if you don’t really know what you are looking for.  Really the most important numbers are the neutrophils, since you want them to be above 1.9, otherwise you go neutropenic and have to undergo more stimulation injection shots to try to get more stem cells to be produced.  Some people really struggle with that number for up to a year or longer and it can cause a lot of issues if that number drops.  But for me, that number seems to be hanging constant around the 4.0-5.0 level, which is just slightly lower than what I was pre-HSCT, so I’m happy with that. My lymphocyte numbers dropped from the 3 month mark, they actually aren’t much higher now then they were when I returned home.  Which may look bad, but it’s completely normal during recovery, that is the number that can take 1-2 years to get back to normal range.  Some people have that number rebound within the first 3-6 months, others take 2 years, just depends on your body. But the number can fluctuate a lot because you have older cells dying off and new ones being produced, so that number really can vary a lot each day, each week, etc.   They also ran a metabolic panel on me and all my numbers there looked good as well.  Glucose is still on the high-end of the range, which is normal because of all the IV steroids, but I think that number may also have been skewed a bit because I did eat food that was higher in sugar about 2 hours prior to the blood draw, back to my completely failed diet, sigh…  And then of course my platelets are on the lower end of the scale, but I am supplementing fish oil and vitamin E every day to help keep my blood thinner because that does help break up blood clots and I am still in the process of getting rid of the partial DVT in my jugular vein.

Oh and for those ladies that are curious, had my period again right on schedule.  My body likes to stick with the 28 day schedule.  So it appears that even though I was one of the few that was hoping for menopause, my body just says nope you aren’t getting that yet. So it does appear that menopause is a no-go for me. Such is life.  This was like one of my regular cycles, no super crazy bleeding or any of that.  I’ve seen a few women post about having crazy long super heavy bleeding cycles after HSCT, but for me so far, it’s been about normal.

So overall how was my week?  Shitty…. Why lie. Not so much on the HSCT or MS front, but more because of the accident.  I started getting whiplash symptoms about a week after the wreck and they got worse before they started to improve. When I initially went to the local Quick/Urgent Care last Wednesday they said I had really stiff neck muscles caused by the whiplash, but they didn’t want to give me muscle relaxers because of the side effects, which I did have bad side effects from Baclofen a few months back, so I agreed with their decisions, because you assume doctors know best.  Well come Sunday morning I was miserable, had a horrible night with a killer headache that nothing would help make it go away, severe neck pain, racing heart, and neck veins bulging out of my neck along with feeling very nauseous.  So I ended up back in the ER to get checked out because things did not seem normal at all and I knew that is the only place that actually could do the imaging to rule things out.  So that is where they did the blood draw via an IV to rule out any infections, then they also opted to do a CT scan on my head as well as C-spine x-rays to see if anything was going on there.  Both came back clear, so no bleeding in the brain or anything else bad going on, but the doctor did say that my neck muscles were so incredibly tight and occasionally spasming that it actually showed up on the imaging.  So at that time I was diagnosed with severe cervical strain and post concussive syndrome.  He gave me a prescription for a different muscle relaxer, Flexeril, to take 3 times a day.  Which I started taking immediately and it really has helped.  Only downside is that the main side effect is drowsiness and fatigue, which happened to me.  Which sucks big time, especially during the day.  But after a couple of days my body has gotten used to it, and it isn’t as bad.  But it does seem to be helping with the neck muscle tightness and spasticity that is going on there.  I also am dealing with that by using heat on that and doing a lot of stretches.  Not the most fun to deal with, but such is life.  But here’s some pics from that excitement in my life and a pic of what my wrist scars are looking like.

Because of all the drama of dealing with the consequences of the car accident, I really don’t have much to report in the way of side effects or improvements again this week. My bruised sternum is finally starting to feel a bit better and so I am hoping that I can back into exercising again this upcoming week.  Then I also am hoping that I feel good enough to get back into actually cooking healthy food again.  Now I have done quite well on the meditation front however, I’ve managed to meditate for a bit each night before bed and I managed to get a couple of morning meditations in as well before my kids wake up. I do tend to sleep much better after I meditate in the evening.

So this week consisted of not doing a whole lot.  The weather was shitty all weekend long, lots of rain, lots of high wind and then the cold temps to go along with that.  The week ended with no rain and not as much wind, but still cold temps that are way below normal.   We have a freeze warning in place for tonight so we will see if that happens this next week, it’s about the right time of year to have the first hard freeze of the season.   But on the plus side we found out that we have a thriving squash patch in our goat pasture.  Apparently when we threw out some of our old squash from last winter, the magpies ate a bunch of the seeds, sat in the trees in our pasture, shit out the seeds, neighbor’s sprinklers watered in the seeds nicely, and now we have a bunch of squash growing in the pasture, quite nice ones as well.  So while the squash we actually planted in the garden failed, apparently my goats can grow one hell of a nice squash patch.  And contrary to popular belief, goats are actually very picky eaters and so they don’t touch much in the way of actual fruit and veggies, like squash, so that’s why the goats had no interest in them.  Goats really prefer to eat weeds like kochia and then leaves off the elm and Russian olive trees. Some pics:

Next week I may discuss the emotional effects of HSCT on the patient themselves and on their families.  A facebook friend of mine did a post on her page focusing a bit on this and that later got posted on the Russia HSCT facebook page as well.  It’s something that people interested in HSCT often ask about on the groups, but usually don’t get a lot of feedback from HSCT veterans because most veterans aren’t active on that particular group anymore and the reasoning for that I mentioned in a previous blog posted that focused solely on that topic. Basically that will touch on things like anxiety, depression, stress, basically the whole nine yards. Like many people say, the HSCT procedure itself is a piece of cake for most people, it’s the recovery that is the hard part.  I also plan at some point in time to do a post focusing on the side effects from the HSCT procedure.  While there is a side-effects list that is often posted on the groups, there are many other side effects that are very common that people opt not to post about because they do not want to scare prospective patients away from the treatment, but I however feel that people have a right to know what they might be dealing with after the treatment.

So that’s it for this week, hopefully next week will be less eventful for me and hopefully I can get back to my normal routines. Later this week I also will be scheduling my 6 month MRI to be done in the next couple weeks.  It’ll be a little early, but at least then I’ll have the results when I go to my neuro appointment in early November.  Not looking forward to it because the machines here are not as high tech as the ones in Russia, so it will be a lot longer time stuck in the machine, I’ll be doing a brain and c-spine MRI.

Here’s a parting shot for this past week of some clouds that produced a large quantity of rain in my local area.

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Thunderstorm

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18 Weeks Home (Day +140)-Recovery & Thoughts on Meditation

So my post this week will be a shorter one because I really don’t have much to discuss for the week. This week has been rather uneventful compared to the week prior, which is a good thing.  The weather was shitty for the first part of this week, tons of rain and high winds, which made doing anything outside pretty much impossible.  The week ended with some warmer temps, which was nice, but I didn’t get to do much outside.  I’ll discuss my week, the usual stuff, then at the end discuss meditation.

This past week was more a laid back week for me with just recovering from the car accident and all the fun that goes along with that. I did do a trip to urgent care at one point in time to ensure that certain aches and pains were just related to whiplash and nothing more serious, but that was my excitement for the week. Mainly my week was spent inside just resting up.  I started having more whiplash symptoms towards the end of the week, which I guess that is common to have those issues pop up close to a week after the accident.  So that resulted in super tight neck muscles which then caused some migraine type headaches and all the fun dizziness and vertigo that go along with those.  I despise migraines… My wrist laceration actually healed up quite nicely, I really was impressed at how quickly that healed, will have some fun scars with that however.  Then my sternum still hurts like hell, not quite as bad as it was right after the accident, but still quite painful when I move certain ways or get it bumped.  Then of course the standard stiff sore neck, which switches back and forth to super tight neck muscles and the spasms that go along with that.   Really all I can do for that is neck/upper back massages, heat, and stretches.  I could do muscle relaxers, but I find the side effects from those to be worse than the actual muscle tightness and spasms so it’s not worth it to me. That got somewhat better yesterday, so I am hoping that it subsides soon.  Although I know that can go on for quite some time.  My sternum should heal within 4-8 weeks……  Which really does put a damper on exercising, but such is life.

So since I normally talk about side effects and improvements, I’ll briefly touch on that.  Really I don’t have much to report on that, given I’ve been recovering from an accident, so it’s really hard to say if there were any side effects from HSCT.  I did have more hot flashes and chills this week, which could be related to hormones hard to say.  Nothing really in the way of improvements.

My goal for the next week will be to try to get back to eating healthy, exercising a bit, yoga, and meditation.  Obviously the exercising has to be somewhat slow because of my sternum.  My legs did get rather stiff for a while from the accident and they are finally starting to loosen up now and get back to normal, so I at least hope to be able to get back to walking a bit each day, although the weather is supposed to turn cold and rainy again this week, so we will see how that goes. I really wasn’t motivated to do a whole lot of cooking this past week, so I hope to be able to have more energy to do that this next week.  I haven’t been eating healthy and I do feel much better when I do stick to healthier foods with much more veggies being consumed. Then I’d like to get back into doing yoga again, although a lot of poses do involve twisting in odd positions so I’m really not sure how that will work with my bruised sternum, but will give it a shot.

Then comes meditation…  I do need to start doing this more often, I used to do it once or twice a day before HSCT, but since then have not really been able to get into it. There is always a lot of discussion on MS groups in general about meditation.  Many people feel it’s a complete load of shit, others really believe it helps, the MS Society tends to flip-flop on the issue as well.  So this topic typically causes a lot of debate when discussed.  Only thing more hotly debated really is diet and honestly I don’t think there is a one fit for everyone on diet, some people thrive on a vegan diet, others thrive on a paleo diet, others thrive on something completely different. There is no one fit for everyone on that, contrary to what some people say, although when it comes to diet, everyone who pushes their diet also has written a book that they sell for profit, so really it’s about money and not helping people, so you really can’t believe much of what they say when it’s all about the money.  But back to the topic at hand which is meditation.  I personally think meditation is beneficial to everyone, not just those with MS and it is one of those things that really can’t hurt you, so it’s worth a shot.  For me I think the best thing about meditation is that it helps with stress relief.  Some people will say it’s a load of shit, and that may be the case for some people, but for me personally it really helps with stress relief.

I will say that I really do suck at meditation.  It has always been a struggle for me.  I just cannot keep my mind focused on my breathing or focusing on nothing at all.  Guided meditation is an even bigger failure for me.  My mind constantly goes to thinking about others things no matter how much I try to focus on breathing, saying a phrase, or whatever. But from what I’ve gathered over time, many people really do suck at meditation, but the goal is to keep trying and when your mind wanders, just forgive yourself and go back to what you were doing. But I do find that attempting meditation for even 10-15 minutes once a day really helps with stress.  For me however I do find being outside quite relaxing and that for me is its own type of meditation. Being outside in nature and just focusing on the sounds of nature can be meditation in its own way.  I spent a lot of time in the past working jobs in the woods, often times being in the woods by myself, so you really have a lot of time to ponder things when alone in the woods, and you really learn to listen to nature and it is quite relaxing.  Although really unless you are super in tune with nature, I don’t recommend roaming the woods alone, because well things could be hunting you and if that thought bothers you, you will spend more time being freaked out as opposed to any type of meditation.  Remember I’m a wildlife biologist who specializes in carnivore species, big cats being one of my interests, so I have no fear of predators in the woods.  I’m unique in that however, most people are terrified of things that could eat them.  But even sitting outside in a park or in your yard can be quite meditative as well.  Just listening to the birds, crickets, water running, etc. Taking in all the sights and sounds and focusing solely on that can really help clear your head and help deal with stress.  And we all know stress in bad, especially for those with an autoimmune condition, so anything that can help relieve stress is a good thing.  While in Russia I also learned that coloring is quite stress relieving and also can be a form of meditation.  I think finding something that works for you is the only way to do it when it comes to meditation.  It’s like diet, what works for one person, may not work best for you.  Trial and error.

So really that is all I really have to discuss for this week.  It’s been a boring week.  We do typically heat our house solely via a wood stove and we did have the first fire of the year in it this past week, so that was exciting.  I know if you listen to certain self-appointed HSCT experts they say you absolutely cannot be around a wood stove or fireplace within the first 6-12 months after HSCT because it is far too dangerous.  Dr. F and my doctor here both are fine with it, guess everyone has to make their own decisions about things like that.  At this time of year we really just start a fire in the mornings on super cold days to warm up the house and then let it burn itself out. No need to waste wood keeping the house super hot, especially this early in the fall/winter seasons.  And then my super exciting discovery for the week was that the local WinCo store started selling actual turmeric root.  I have been trying to find actual turmeric root in stores around here for over a year with no luck, no stores sell it, or if any others do it is so sporadic that they never had it when I would look.  So I’m hoping they keep selling it, because I much prefer fresh over dried.  I first experienced fresh turmeric root when a friend back east sent me some earlier in this year and it was amazing. Turmeric is super anti-inflammatory so it’s a beneficial food to eat if you have autoimmune conditions, or even for healthy people it helps with inflammation.  So here’s a couple of pics from my week.  We’ll see how I’m doing next week!

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17 Weeks Home (Day +133)-Surviving the Week: Car Accident, Stomach Bug and Walk MS

As the title says, it’s been quite the week…..Seriously….I was doing so well at having an uneventful recovery for the past couple months I was hoping it would stay that way, but no, this week had to ruin all that.  First off, my family and I are fine for the most part from the accident, so no worries there.  So I’ll start out at the start of the week and work my way to the end of the week, which was actually yesterday, so this blog post is technically a day late but yesterday was the crazy car accident day, so really blogging was not a priority for me at that time.

So the week started off fairly uneventful for me.  Thursday and Friday were laid back days, not much going on.  My oldest ended up picking up a stomach bug of the viral variety at some point in time, pretty sure it was from her grandma, as grandma ended up being sick the same day…Which in turn led to her projectile vomiting all over the backseat of the car, literally I was amazed at how much vomit came out of her, thank god we were almost home at the time.  She seemed fine after that, until the middle of the night when she again projectile vomited all over herself, the entire bed, floor, etc. and then came crying to me and getting vomit all over me. So regardless of how careful I was around her, I was bound to eventually be affected by it, luckily it didn’t affect me till Sunday.  She was good for a couple of days until Saturday night when the vomiting all over the bed and room occurred again.  I did a lot of laundry last week….. So that was exciting.  Since Saturday she has been fine, but then I picked up the bug and while I was not projectile vomiting everywhere, it did make me nauseous and I spent a lot of time in the bathroom, so I survived on unhealthy canned soup and water all of Sunday and Monday.  After Monday though I was good to go.  Never spiked a fever higher than 99F so wasn’t concerned as I knew it was viral and there is nothing they can do for viral issues other than give you fluids if you are super dehydrated. So my plan of healthy eating this week completely went out the window. Then my youngest got it as well, but luckily hers only resulted in one episode of vomiting and some very impressive diapers.  Damn hubby never catches anything, lucky bastard.  But we are all over that now, luckily those sorts of things only last a few days.  So lots of hand washing and copious quantities of hand sanitizer were used this past week, and I did numerous loads of laundry, which results in me having to fold it, and I really despise folding laundry…I think no matter how much you try to avoid it, you will get sick with something within the first 6 months, whether it’s a viral bug, a cold, the flu, etc.

So that brings us back to Saturday the day of the Walk MS Twin Falls event.  So I wasn’t going to do the event because well the MS Society really doesn’t care about HSCT or funding it, they are all about promoting expensive meds. But I asked on facebook if I should do it and wear a shirt promoting HSCT and I received an overwhelming amount of support for it, so I opted to do it.  So we showed up the day of the event and now if you have MS they require you to wear a bright green shirt saying you are living with MS if you want to walk…. I shit you not, that is the rule at this event.  Here I was expecting the normal green tag to attach to yourself, but no you have to wear a bright green shirt to attract lots of attention to you, because apparently if you have MS you want everyone to know it…. But now I have a free bright green shirt that says I’m living with MS that I guess I can use for painting or something around the house since I will not be wearing it in public. So at these events you get white tags with numbers on it that you are supposed to write who you are walking for.  Why the tags have numbers on them I don’t know since it’s not a race, but whatever.  So I modified mine the best I could to try and get my point across and one of the MS gals told me that was not appropriate to put on my tag and that I should only put a name down, but I’m a rebel and didn’t obey her, ha.  Most people read my tag, looked at me like I was a complete freak, and then started pointing and whispering to each other about me, then most people avoided me like the plague.  Apparently they thought I was promoting witchcraft or something.  I did have 2 people ask about HSCT and they then looked at me like I was a complete nut for undergoing something so crazy and wished me the best of luck.  Of course everyone was running over to the medication related booths to get all the freebies, you know the usual free backpacks, chapstick, pens, markers, T-shirts, everything promoting Tecfidera, Tysabri, and Aubagio.

The turnout this year for the walk was much better than last year, there was around 75 people there, they claimed there was 160 people there at a minimum, certainly not true, perhaps the MS has affected their counting ability, certainly didn’t affect mine, but I guess saying more people showed up looks good for numbers. It is really quite sad that the turnout is so low because in this part of Idaho, 1 in every 300 people have MS, the highest rate in the entire US, but yet nobody cares.  Although in people’s defense we also have some of the highest rates of cancer in the US as well, so there are a whole lot of causes that have fundraising walks.  I blame the high numbers on agriculture and the chemicals used in it, people can deny it, but there has to be a connection. The highest rates of MS occur in high agriculture areas in the US. There were 6 people with MS at the walk sporting the bright green shirts.  Most had zero interest in HSCT at all, they were all content on their meds and loving the attention they were getting from everyone.  It’s one thing I never have understood about some people with chronic conditions, they love to advertise that they have them, almost everyone with MS that was there had numerous tattoos stating they had MS, along with the orange ribbon.  That is the last thing I want on my body is something reminding me I have the fucking disease. Even those with crutches or wheelchairs were saying it’s god’s will and whatever happens happens. To each their own, I didn’t push HSCT, I was just hoping people may research it more to educate themselves, but most seemed content on their meds and their current disease progression. Maybe I’m odd but the first thing I did after being diagnosed was all the research I could on MS and everything out there that may stop progression.  I was not going to let MS ruin my life. So really the walk was not a huge success, but the weather was perfect and my family and I did the 2 mile walk along the canyon rim and enjoyed the view and watched some BASE jumpers.  Really the highlight of the day was not the walk itself, but the fact that there was a guy there finishing up breaking a world record for the number of BASE jumps completed off the bridge in a 24 hour period of time.  We had gone the day before and watched him complete 3 jumps, crazy, as the rule was he physically had to climb up a trail up the side of the canyon between jumps, he was averaging a jump about every 15 minutes when we were there.  He ended up with 61 jumps and broke the record.  Most of my pics didn’t turn out, but here are a few from that.  I don’t have any of myself that turned out and the good ones I do have involve my kids and I opt to not post pics of them on the blog.

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As I mentioned above Sunday and Monday I wasn’t feeling the greatest, I still could do things, but when your stomach and guts are acting up, not much you can do.  Tuesday wasn’t too bad of day, it was the last warm day we will have here for the year, so the kids and I opted to spend most of it outside.  We picked plums from our trees and considering how screwed up the weather was this year, I’m rather impressed with the amount we actually got from the trees.  The golden plums were gigantic this year, not sure why that is.

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Plum Harvest

So that brings us to Wednesday…..  The day started out rather uneventful and was a day that was actually well planned out.  Goes to show that you should never plan out a day, you should be spontaneous…In the early afternoon I was supposed to drop my hubby off at the hospital for some stuff he needed to get done and then I was going to do some fun shopping with the kiddos before needing to pick him up. Well we made it about half way to town before the plans changed.  So I live in a rural area and people often run stop signs, so you have to be a super paranoid driver when it comes to approaching intersections.  We were on one of the main roads heading to town, speed limit 50mph, which I was going 50mph exactly as I was using cruise control because you do not dare to speed here because you will get ticketed for speeding. First I will say that I was on a road that has no stop signs, all the side roads have stop signs. Seen a truck with a flatbed slow down for the stop sign and stop, so I wasn’t concerned at all and then he pulled out right in front of us to continue on across the road, I slammed on the brakes and knew we were going to hit him, and that is exactly what happened, we skidded into the side of the flatbed.  Sheriff estimated we hit going around 40-45mph and it was like hitting a brick wall, his truck moved about a foot and had pretty much no damage.  Completely totaled my car…. Airbags went off, literally felt like my chest was going to explode.  Hubby and I, both in pain, leapt out of the car to check out kids in the backseat and to get them out of the car as we were still on the road, and nobody pays attention and we didn’t want someone slamming into the back of us. Kids amazingly were 100% okay.  Youngest was still rear facing in the carseat and had just fallen asleep so it didn’t faze her at all, she was all smiley and happy when we got her out.  Oldest was in a seatbelt with a highback booster seat and also was fine, no pain or bruising at all.  Not really sure how they lucked out with no injuries, but that was our big concern. Oldest was more fascinated with my loud screaming at the other driver about how he could have killed my kids as well as a bunch of profanity and then she was concerned about the poor car, which she still is upset that we aren’t getting it back.

I had horrible chest pain, badly bruised fingers on my left hand, and a lacerated, swollen and bruised right wrist so I got carted off by ambulance to the hospital, which I will say was my first ambulance ride.  Hubby was alright for the most part other than some pain, so he stuck around with the kids until his dad came and retrieved all them.  Sheriff and fire department guys were awesome, my girls ended up with stickers.  Awesome guy who was behind us on the road stopped and helped as well and let the girls sit in his truck until my FIL showed up to retrieve everyone.  Goes to show there are still some nice people out there in the world. Hubby ended up going in today for a bunch of X-rays and they think he has 3 cracked ribs, but otherwise he’s okay, minus the standard accident pain.  So I ended up in the ER and the doctor wanted to do X-rays on my chest and wrist to see if anything was broken, they could tell that my left hand fingers were not broken just bruised down to the bone.  So I had to wait around for around 1 1/2 hours to get the X-rays done, then about another 1 1/2 hours to get the results.  Final results were that nothing is broken, although my sternum and upper ribs are badly bruised and are going to hurt like hell for quite a while.  All caused by the seatbelt and the airbag, as when the airbag deployed it smacked me right in the chest, the benefits of having long legs and having the seat back all the way, it didn’t hit me in the face.  Wrist is fine, although the bone is bruised, and they bandaged up the laceration and I was finally able to leave. So a couple pics from that excitement.

So today is technically a new week, but an update on how I am doing today.  Ironically I actually feel a bit better than I did yesterday.  Chest still hurts like hell when I move certain ways, laugh, or cough.  And even worse when my youngest climbs on me and bumps a certain spot. Wrist and fingers don’t really hurt that bad, unless I bump the bandage by the cuts. My neck is a bit stiff and sore.  My neck muscles and nerves on the left side of my neck are acting up a bit more than they were before, but that is to be expected.  I didn’t really suffer much in the way of whiplash.  The doctor said my blood numbers look good, minus the lymphocytes so there is very low risk of infection in the cut, but I just have to watch it carefully. The laceration itself was actually caused by the airbag deploying as was the bruising on my other fingers.  So really the accident could have been much much worse than it was, so I can’t complain.  I mean I’m pissed as hell at the other driver for not paying attention, which he admitted it was 100% his fault and claimed he never seen us coming until we hit the side of his truck and he did receive citations.  I really think it’s because his giant dog was in the passenger seat, most likely blocking his view….So now I have no car and we are borrowing a relative’s car until we get the insurance money to get a new one.  But of course his insurance company doesn’t want to pay out, so now it’s a battle between car insurance companies, so that could take a while to get everything sorted out, hopefully soon I can get a new car, well it will be a used car, but at least new to me.  We got the kids new car/booster seats today.

So I guess now that you know all the shit that has happened this week I can do my usual blogging about side effects and improvements. So side effects from treatment were non-existent this week.  Improvements were also non-existent.  As everyone knows when you get any sort of sickness it can make old symptoms pop up for a bit just because of the existing damage and that happened a bit for me.  Some of my numbness is back and my energy level is a bit lower, but is improving.  Accident itself really didn’t faze me, so I think once the pain subsides in my chest area I’ll be back to where I was prior to this past week. No need to stress about anything as nothing can be changed, just gotta go with the flow and move on with life.

So all in all I am really hoping that this next week is very uneventful.  The weather is supposed to be cold and rainy all week long, so I’m planning to stay inside and try to get things ready for winter and just hang out with my kiddos.  But as a parting shot, here’s a rainbow pic taken from my deck this past week.

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Rainbow

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Food Served at the Hospital

So way back when I was in Russia, a friend asked me if I could do a blog post that focused solely on the food that we were served at the hospital.  When I did my daily blog posts I always discussed what was served that day, but to make it easier for people I was asked to do a separate blog post so here goes.

First the meals may change a bit from year to year or season to season, but for the most part they have tended to be fairly similar for the past few years. And the same food was served each week, basically every Monday was the same stuff, Tuesday had the same stuff, and Wednesday was the notorious tongue day. A few times stuff was mixed up a bit, but usually it was the same. Many people say the food is horrible and bland, but really it is what you should expect from hospital food.  It’s bland, but it is nutritious and good for your body especially in isolation.  Now they don’t typically cater to those with specialty diets, but if you are 100% vegetarian, you can request the vegetarian meal plan and they will feed you that, but most vegetarians are not impressed by it because it mainly consists of boiled veggies. However many people opt to cook their own food in their rooms, either in the microwave or using a hot plate that they have purchased.

But here are some slide shows of the meals each day, I included all the pictures I had in my other blogs.  I didn’t take pictures every single day, some days I missed the meals when I was exploring Moscow, some days I just forgot to take pictures. Beneath the slide shows is a sample menu from when I was there.  For the most part the meals were identical every single week, although there were occasional variations, most often during Breakfast #1 when the porridge would get changed from time to time.  Also occasionally random veggies were added to the plate as well for certain meals. The meal times may change a bit, but you are served 4 meals a day, when I was there, this was the schedule:

Breakfast #1 : 8:00-9:00am

Breakfast #2: 12:00pm

Lunch:  2:00pm

Dinner: 6:00pm

The time your meal is served may depend on what floor you are on and what room you are in.  Also some days they do run out of certain foods and others are substituted, this happened occasionally on tongue day, when regular beef was substituted, which many people preferred.

Breakfast #1 (8:00-9:00am)

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Typical weekly menu:

Monday: Cream of Wheat Porridge, Egg Casserole Square, Bread, Butter, Tea Bag, Sugar Packets

Tuesday: Oatmeal, Bread, Cheese, Butter, Tea Bag, Sugar Packets

Wednesday: Buckwheat Porridge, Hard-Boiled Egg, Bread, Butter, Tea Bag, Sugar Packets

Thursday: Tapioca Porridge, Egg Casserole Square, Bread, Butter, Tea Bag, Sugar Packets

Friday: Semolina Porridge, Baby Yogurt, Bread, Butter, Tea Bag, Sugar Packets

Saturday: Cream of Wheat Porridge, Hard-Boiled Egg, Bread, Butter, Tea Bag, Sugar Packets

Sunday: Oatmeal, Baby Yogurt, Bread, Butter, Tea Bag, Sugar Packets

 

Breakfast #2 (12:00pm)

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Typical Weekly Menu:

Monday: 2 Boiled Apples, Chicken Leg/Wing/or Thigh, Baby Yogurt,  Cup of Tea/Broth

Tuesday: 2 Boiled Apples, Hard-Boiled Egg, Piece of Beef, Cup of Tea/Broth

Wednesday: 2 Boiled Apples, Baby Yogurt, Piece of Beef, Cup of Tea/Broth

Thursday: 2 Boiled Apples, Piece of Beef, Baby Yogurt, Cup of Tea/Broth

Friday: 2 Boiled Apples, Piece of Beef, Hard-Boiled Egg, Cup of Tea/Broth

Saturday: 2 Boiled Apples, Piece of Beef, Baby Yogurt, Cup of Tea/Broth

Sunday: 2 Boiled Apples, Hard-Boiled Egg, Piece of Beef, Cup of Tea/Broth

 

Lunch (2:00pm)

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Typical Weekly Menu:

Monday: Chicken Leg/Wing/or Thigh, Boiled Cauliflower, Bread, Blended Veggie Soup

Tuesday: Blended Broccoli Soup, Beef Stew Mixture, Boiled Buckwheat, Bread

Wednesday: Beef Tongue, Mashed Potatoes, Fish Soup, Bread (Occasionally Shredded Beets)

Thursday: Liver Stew Mixture, Boiled Buckwheat, Spicy Veggie Soup, Bread

Friday: Rice, Chicken/Various Meat Biscuit/Loaf, Veggie Soup, Bread

Saturday: Corn or Veggie Soup, Chicken/Various Meat Biscuit/Loaf, Mashed Potatoes, Bread

Sunday: Pasta, Beef Stew Mixture, Fish or Veggie Soup, Bread (Occasionally Beet/Pea Salad)

Dinner (6:00pm)

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Typical Weekly Menu:

Monday: Beef Stew, Beef Baby Food, Bread, Cookies, Tea Bag

Tuesday: Whitefish Steak, Mashed Potatoes, Bread, Cookies, Tea Bag

Wednesday: Oatmeal or Various Porridge, Raisin Cream Bar, Bread, Cookies, Tea Bag

Thursday: Whitefish Fillet, Mashed Potatoes, Boiled Peas, Bread, Cookies, Tea Bag

Friday: Boiled Buckwheat, Chicken/Various Meat Biscuit/Loaf, Beef Baby Food, Bread, Cookies, Tea Bag

Saturday: Corn Soup, Raisin Cream Bar, Bread, Cookies, Tea Bag

Sunday: Poached Whitefish, Mashed Potatoes, Bread, Cookies, Tea Bag

 

So there you have it, a blog post on the food that was served in the hospital when I was there.  It is nothing like hospital food in most other countries where you get to order off a menu and can get whatever you want.  But it serves its purpose and I ate pretty much everything I was served, except for some of the porridge which I often found inedible and then the fish steaks, they were nasty.  I didn’t really eat the apples at the start, but during isolation I was desperate and they really weren’t too bad.  And when it comes to the fish I really have no idea what type of fish it was, it was white in color, so it’s anyones guess.

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