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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About Cat

I'm an outdoorsy gal, wife, mom of 2 and MS Warrior. I underwent HSCT in Russia in April/May 2016 to halt my MS and documented my entire journey while I was there in my blog and am now continuing to blog through my recovery.
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