This past week marked my 2 month stem cell birthday, July 11th was the date for that. I didn’t take a picture for the occasion this time around, but my baldness is still going strong. Although I am starting to grow some light blond fuzz on my head now. I’m guessing the hair growth will start to take off more at the 3 month mark, that seems to be the magic time frame for most HSCT veterans.
Now as I mentioned in my last blog I had 2 medical appointments this week. The first was a neck ultrasound/doppler to evaluate my DVT and the other was my neurologist appointment. But before I get to those topics lets discuss how my week went otherwise. Well in all honesty a couple of the days this past week downright sucked. My neck/upper back spasticity on my left side was acting up and caused me headaches, neck pain, back pain, and left arm pain to the point that I couldn’t really do a whole lot on those days, not fun. And also on those nights I also had horrible insomnia and didn’t sleep much at all, which I think made those issues so much worse. But today was a new day and I felt much more normal today, still had some neck pain/soreness but all in all, can’t complain. The rest of the time I felt pretty good. Had good energy and felt like I did pre-HSCT.
Last Friday I had an ultrasound/doppler done on my neck to see how my DVT was doing in my left internal jugular vein. It had been a little over a month since I was diagnosed with that and my Xarelto was causing me horrible acid reflux so I wanted to know if the clot had gotten smaller in hopes that I could perhaps get off of this god-awful medication. Well I didn’t get the official results back until late Monday afternoon, but the results were that the clot was a tiny bit smaller, but still very much there, but now it is classified as being in the sub-acute stage which means there is very little chance that any parts of it will actually break off and cause a PE in my heart or lungs, so that’s a good thing. Sub-acute basically means it’s been there over a month and is a bit firmer in texture so not as easy for chunks to break off of it. Now I had stopped my Xarelto for 2 days to give my poor throat and digestive tract a break from the horrible acid reflux, and immediately after stopping it, the acid reflux went completely away, but I did opt to start taking it again even before I got the final results of the ultrasound back. I will say after restarting it again the acid reflux has not been as bad as it was before, so that is a plus. But I think I will opt to stay on blood thinners for the 3 months they suggest and then at that time even if the clot is still present will stop taking them in hopes that the body will continue to break down the clot on its own. I believe I will be doing another neck ultrasound/doppler at the 3 month mark just to see how it is doing. I did chat with a fellow HSCT veteran who also had a DVT in that same vein, hers was much larger than mine, and her doctors followed that same protocol and are hoping the body eventually takes care of the clot. She had her HSCT done about 1 1/2 years ago. So like I said before it isn’t a super common occurrence, but it does happen. So my plan is blood thinners for a total of about 3 months or so and then letting the body attempt to take care of it itself, unless the doctor at that time feels blood thinners are needed for a longer period of time. The neck ultrasound itself only took around 10 minutes, was super fast and not all too exciting. Got my neck covered in warm goo and then had the ultrasound wand rubbed all over the place and pushed down in spots to check the compressibility of the veins. But here are a couple of pics from my ultrasound, they are a bit blurry as I snapped them with my phone and the lighting was horrible in that room.
Now my second appointment of the week took place earlier today and it was my neurology appointment. This appointment was actually scheduled back in February before I actually had a date for my HSCT treatment, so it just happened to work out that I would be seeing him a little less than 2 months after being home. Now I honestly wasn’t sure how this appointment would go as my neurologist didn’t actually know I went to Russia for HSCT treatment…. Now he is the original person who put this whole idea in my mind shortly after I was diagnosed by telling me there was a potential cure but it was expensive and available in Europe, which made me do my research. I had discussed the possibility of doing this with him late last year and actually at my appointment in early February and he of course couldn’t support the decision and had told me to avoid Mexico, we had also discussed the US clinical trials at an earlier visit. I actually got my cancellation date in late February and never got the chance to actually discuss this with him prior to me going, just because appointments are booked out months in advance and you can never actually call and talk to a doctor. But I know the neurologist looks at his patients’ files earlier in the day before he has any appointments and I knew he would see my updated medical history that stated I had this procedure so I knew when he walked in the room he would already know.
Now to be quite honest my neurologist is a very blunt man, he is straight to the point and holds nothing back, he has gotten bad reviews from patients for his straight-forward bedside manner, which I for one actually like because he doesn’t try to make things sugar-coated, he gets right to the point. He also never pushes any meds and lets the patients themselves figure out what meds they want to do, etc. Apparently that is an oddity when it comes to neurologists. So the first thing he did when he came in the room was ask me why I had no hair, so I explained to him what I did and said I knew he wasn’t a huge fan of the idea, and he actually was very supportive of the whole thing now that it was something I did. He asked me all about the treatment and told me he knew it was a legit treatment because it did involve chemo and we discussed it a fair bit. Of course he had to ask me how the food was there, seems to be the common question I get asked by doctors, ha! But then we got down to the usual things that happen during the appointments. I got smacked in my knees and ankles with the little hammer thing, he made me use my eyes and follow his finger around, then did my finger to his finger to my nose thing. I’m sure most MS patients know what I am talking about with those things. Then I had to walk down the hall and back. I had improvements in everything!!!! So that was promising. And before I could even bring up when Dr. F wanted me to do an MRI he mentioned that he’d like to see me again in November for a follow-up appointment and an MRI if I was willing, and I told him that Dr. F wanted me to do a 6 month and 12 month MRI so that would work out well. He is excited to see how things turn out with me. He currently has a patient that has had this done in Chicago for a condition similar to MS about 2 years ago so he does know how to do the follow-up care for this. Like always he ended the appointment by walking me out to the desk and giving me a handshake and telling me to take care of myself. While not like Dr. F, my neurologist does at least do a handshake when leaving. I do like my neurologist even though many patients do not.
Like always lets discuss side-effects of the HSCT. Nothing too exciting to report, just hot flashes. I supposed the insomnia could be a side-effect of the HSCT, but I often had that pre-HSCT so I’m not sure if it is related to the procedure or just the MS damage. As for prior MS symptoms that decide to pop up, well I have the spasticity still that comes and goes, but I’ve been dealing with some stress in my life so that may be triggering that. A bit of fatigue in the middle of the day, but that is about it. Nothing all too bad this week.
As for improvements, well as I noticed during the neurologist visit today my reflexes are much better in my legs and ankles, so I guess that is an improvement I never noticed before and my walking has improved. Again things I never really noticed with myself, but others can. Now the neurologist did not do the toe test today, but my hubby tried that with me a while back and I can tell which direction my toes are being moved, whether it is up or down, so that is a lot of progress there. In the past when the neurologist did that I would randomly guess and have no clue. Perhaps he will test that at my next appointment. Everything else appears to be about the same for me. My heat intolerance has greatly improved and the high temperatures do not seem to bother me much at all anymore which is a good thing given where I live.
Now as for exciting things that I have done this past week, that has been a whole lot of nothing…. It’s been a boring week, very sad. Some shopping trips into town, my doctors appointments, walking around outside the house, that was about it. But sometimes just chilling at home is nice. But I did manage to get the first harvest of the year from my garden, a whopping 3 jalapeno peppers.
So that was my week, a couple doctor’s appointments, some pain, some sleepless nights, and picking peppers. Can’t complain, could be a lot worse. Onwards and upwards to the next week!