Kickin' MS with HSCT

September 4, 2014  –  HSCT 1st Birthday!

What a year!

I am so blessed to have been able to have HSCT in Moscow last year, and happy to report, all indications are it’s been successful in stopping my PPMS progression. For HSCT to be considered successful, it only has to stop the progression of the disease, no improvements have to be achieved. But… I have had some improvements.

Here is a very short YouTube clip of my hair growing back. Only 17 seconds, so don’t blink. It has sound too.

For me, recovery has been much harder than the procedure itself. I say this because, you knew how long the procedure was going to take, and pretty much what to expect, you don’t know what to expect day to day with recovery.  It truly is a roller coaster ride, and not all that fun at times.  It has also been very emotional, not knowing what to expect and wishing recovery would happen faster. Slow and steady is the thing everyone must remember during this time, and expect to be taught patience, whether you want to learn it or not. But, I’m now one year out and looking to the future.

In March I was interviewed by our local morning show, Good Morning Arkansas – KATV, for MS Awareness Month.

Several have asked that I talk about my improvements as well as things that didn’t improve. Being PPMS, my main symptoms were walking, gait, spasticity, balance, bladder urgency, cold sensitivity, fatigue and cognitive issues. I still have spasticity, and manage it with magnesium tablets, usually a couple at night do the trick. Some nights that doesn’t help enough and I’ll have a couple of glasses of wine too. I’ve discussed this with my doctor and he agrees this is less harmful, in my case, than taking Baclofen or other muscle relaxers. More enjoyable too. 🙂 Baclofen gives me horrible nightmares and makes me feel drugged half of the next day. Cold sensitivity greatly improved while in the hospital.. Despite the challenge of living in a colder climate last winter, I was out walking in 30F without problems. Balance, bladder urgency, cognitive issues have all improved, but not perfect.

My walking is better some times more others, but I’d say it’s improved. I even had a neighbor comment that she didn’t think that was me walking the other night because my gait was so normal. I know I’ll never be back to 100% normal, but I can live with the way I am now. I was able to pretty much retire my trekking pole at 6 months. I still pull it out if I have a lot of walking to do, like when we went to San Francisco recently. I would have fallen several times without out it. When my legs get tired they get sloppy and don’t want to work properly. So, I put my pride aside and bring it out for safety sake.

Fatigue has been another symptom that is hanging on. It is better, but not gone. I still need a nap mid-day, every day, to function. I really hoped this would be gone by now. It really does disrupt my day, but I have to make time for it. Maybe I’ll see improvement over the next year.

I’d reported terrible joint pain in some of my previous blogs. I’ve spoken to several others that have had it, and it is listed as a possible side effect of the chemo I had. Apparently I’m now holding the record for the longest, continuous joint pain. Thankfully it’s now only in my ankles, feet and toes, and is mostly gone from my knees, but it still is very painful. I’ve tried every home remedy that I could find and nothing touches the pain. It does work it’s way out after I get moving, but sitting, sleeping, getting started walking, all very painful.

Now some good news, I’d set a goal to walk 2 miles by August. CHECK! Did that by mid June.  It does take it all out of me, and I’m pretty much wiped the rest of the day with Jello Legs, but I can do it.  My normal walk is 1.5 miles a couple of times a week and then 2 miles on Sunday.  So, much better than the .25 miles I was barely able to do before I left.  I’ve also worked very hard at the gym, I lift weights on the days I don’t walk.  I’m very happy with the progress and hopefully I’ll be able to continue to add more distance slowly. I will tell you the key is working out every day. Don’t be a couch potato and expect to improve like this, it’s hard work.

I’ve also been able to ride my bike again. Unfortunately, right after I started on the bike, I fell and broke my arm. (I didn’t fall riding my bike, just walking and tripped over something on the pavement) So riding has been put on the back burner for a little while longer. I was pleased that the 2nd time I  got on my bike I was able to ride 6.5 miles, which is what I was doing before I left. The difference this time around is my legs were not “sloppy” the last mile like before. They were still pretty strong.  I could have gone further, but didn’t want to push it on my first long ride.  So, hopefully in the next few weeks I’ll be back on my bike and adding distance.

Also in June I had the opportunity to meet a few other HSCT warriors in Dallas, Texas. Kristy, Brooke, Sheli and Lisa all met for a few days. Amy joined us for one night. Kristy and I went through our treatment together, so I knew her, the other ladies this was our first opportunity to meet face to face. We had a blast! We were also interviewed by ABC and CBS Dallas. (clip below)

It’s almost surreal to think that this time last year I was in Russia having HSCT. I have to read my previous blogs just to remember all that happened. I’m so thankful for Dr. Fedorenko and his team for saving my life. He believed this would work, when almost no one else did. I am also grateful for the warriors that have gone before me and paved the way for me, and now so many others.  And thank you, to all of those that helped me raise money, prayed for me, sent me cards, and have been there all the way through this journey. Can’t wait to see what the next 12 months has in store!!
VW

1st day at the hospital with my parents.

Dr. Fedorenko

Kristy and I looking like lunch ladies.

Dr. F and Dr. Julia

Saying good bye to Kristy.