6 month post HSCT

Well another month has flown by and I’ve now had my 6 month follow up Neurologist appointment and MRIs, so thought I’d update you.

First, I met with the Neuro at UAMS a couple of weeks ago, this was the first time to see him since I moved to this area just before leaving for Russia. With that being said, he doesn’t really know what my condition was before other than notes form my former Neuro and my before and after videos. Well…I first met with the intern, and he did all the strength test and walking test, and made the comment that my strength was that of someone without MS. 🙂 I still have hyper active reflexes, very obvious, since I almost kicked him in the face. Then he went and spoke to the head Neuro and he came to check me out. He was very interested in my story and wanted information on Dr. Fedorenko and Dr. Burt, which I gladly provided. I then showed him my walking videos and he was amazed. He said to come back in 6 months so we can celebrate more of my improvements. I told him I hope to be walking 2 miles by that time, and he said, he had no doubts that I would. So, that went very well.

Second, I had my MRIs on Friday, so for 2.5 hours in the tube with my head locked down I thought I would die. I’m claustrophobic, so this really is not fun, at all. I had to have him get me out of there twice. Anyway, I did finish and don’t want to do that for a very long time. It appears that nothing has changed since Russia, I still have the 3 very small non-enhancing lesions on my spinal cord, and that’s it. So, nothing new, is good news to me.

Lastly, we’ve been getting the word out about HSCT. I was interviewed on Good Morning Arkansas yesterday morning for MS Awareness Month. Brooke and Diana were interviewed up in PA yesterday, and the segment Kristy Cruise did for 60 Minutes Australia aired a few weeks ago. They were filming that while she was in Russia with me. If you want more, email the stations and lets shake things up.

Here is my Good Morning Arkansas interview, aired March 31, 2014.

Here is the interview of Brooke Slick and Diana Rees on We Are Central PA.com
http://www.wearecentralpa.com/story/d/story/hello-russia-bye-bye-ms/10386/T_T7nhMgW0OxWIOle5nwhw

This is Kristy Cruise on 60 Minutes Australia
http://sixtyminutes.ninemsn.com.au/8810871/Russian-Roulette-medical-treatment

Remember no one wants you to be better as much as you do!!
VW

Walking Videos

I’ve been asked by several people if I could post some additional videos of me walking. Dr. Fedorenko had me as EDDS of 6 when I left the hospital. I typically used a trekking pole for balance and to stop me from falling. I have been still using the trekking pole, but now that the chemo pain is leaving I see it sitting in the closet more and more.

So you asked for them, here we go.

1. Sorry you have to turn you screen for this one. This was taken late afternoon, Aug. 18, 2013, the day before I entered the hospital for HSCT. I actually fell just after she stopped filming.

2. This was taken in Moscow on afternoon, Aug. 17, 2013.

3. Morning – Aug. 19, 2013, at the Vega Hotel, waiting on cab to take me to the hospital.

4. Morning – Feb. 28, 2014, this was the first morning without chemo joint/bone pain. NOTE: I’d not been able to jog in place before, this is a new trick.

5. Evening – Feb. 28, 2014, after going all day, cleaning the house, and had just taken a shower. (Not everyone would count taking a shower, but in MS world that’s time on your feet…it counts)

5 months post – Everything Is Awesome!

I’ve been home 5 months, and 3 days.

First I’d like to report that my chemo joint/muscle pain seems to be almost gone. I’d starting having little windows of relief, usually during the night and I only noticed because I’d gotten up and gone to the bathroom. One morning Thomas asked if I’d been walking around the house during the night, I said yes, no pain and wanted to enjoy it for a while. Then I had windows of relief in the evening watching TV, just stood up. JUST STOOD UP! Usually I look like a 90 year old woman trying to stand up. Ok, maybe 100 year old woman, I saw my 93 year old Granddad stand up faster than me this week. Amazing how pain can really zap the energy right out of you. This morning I was up by 5:00 am and raring to go. Had to show my husband my new trick, running in place, couldn’t do that yesterday. I’d say I’m 85% joint/muscle pain free, I do still have spasticity, so that’s why I’m specific about which pain is leaving. Spasticity is still here, but compared to the chemo pain, it’s a walk in the park. Totally manageable, even without any muscle relaxers. I keep wanting to stand up and see if the pain is still gone…yep, still gone.

Me dancing without pain this morning.

Me dancing without pain this morning.

Next note worthy topic, my hair. Hair is salt and pepper and very crazy curly. Tight curls, that no matter what you do to straighten it, just makes it curlier.

2.28.14

2.28.14

2.28.14 Hair update

2.28.14 Hair update

I’m up to walking 1.25 miles a couple of times a week, lifting weights 5-6 times a week and short walks daily. I still need a nap daily, and sometimes that’s for an hour and some days 2 hours, but I’m letting my body rule how long it needs that day. Thankfully my cold sensitivity has greatly improved, because this has been a pretty cold winter here in Arkansas, nothing like what I’m used to in Florida. A little cold this morning, but here is a post of me walking. Note my dog always loves to photo bomb my pictures, so true to form here’s Dottie at it again. Love how the freeze frame captures in mid stride.
So, healing is moving right along and I’m so happy with the progress. Slow and steady.
Everything Is Awesome!!

What a year!

I’ve been home three months tomorrow and looking back it’s been quite a year. We crammed a lot in over the summer, with selling a house, packing up and moving halfway across the country, fundraising, and then going to Russia for HSCT. For the last 3 months I’ve been in recovery mode. It’s amazing how weak I was when I first returned and how far I’ve come in my recovery. I remember needing to hold on to Tom just to walk up the two steps to our front door, now I’m walking a mile every other day. I’m still not up to my pre-HSCT strength, so watch out when that happens. I finished up PT last week and now it’s all on me to keep working out. I’m going to start going to the gym again January 1st. Lifting weights again should really help, I just have to remember slow and steady.

My hair is really coming in now, and I don’t wear a hat in public any longer. Kinda proud of my new hair. I’ve been taking a photo every week for the past 8 weeks to see the progress. You can almost see it growing.
hair 11.1.13

hair 11.8.13

hair 11.15.13

hair 11.22.13

hair 11.29.13

hair 12.6.13

hair 12.14.13

hair 12.20.13

Look at that side sweep!!
I’ve been improving right a long, but am experiencing extreme joint pain still. It’s fine if I’m moving or sitting still, but once I need to move from sitting, laying down or standing still it hurts. It should go away in 3-6 months, and that can’t happen soon enough for me.

I’ve been truly blessed this year to be able to have this treatment, and I will always be thankful for all of those that helped me get there. I’m still sending monthly updates to Dr. Fedorenko, and he is very pleased with my progress and believes the treatment was successful in stopping my progression. What a way to end the year and start fresh in 2014!!

Merry Christmas and Happy New Year!!   VW
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2.5 month post transplant

November 19, 2013

How time flies.  I can’t believe it’s been 2.5 months since I received my stem cell transplant in Moscow.  I was just looking back on the post, and remember how nervous I was at the time.  I knew this could be one of the parts of the treatment that could be a bit painful, and it was.  It lasted such a short time, it’s a distant memory now.  Looking back I know it all was worth it.

At this point everyone wants to know if the treatment was successful.  For HSCT to be considered successful it must stop the progression of the disease.  No one promises you that any symptoms will go away, or any damage reversed.  We all hope for that, but it’s not what is considered a “successful” outcome, it’s a BONUS!  For me, with PPMS, it might be a year before I can say the disease has not progressed, so it’s a waiting game.  When you first come home from the treatment I call that the “Honeymoon” period, you are still pumped up on steroids and your symptoms are masked.  So, you think your symptoms have disappeared, but they are just hiding, they sneak back up, maybe not a strong as before, but they come back.  I am now on the recovery roller coaster.  My systems may come and go over the next 12-24 months.  So, the final outcome remains to be seen.

What can I tell you 2.5 months post transplant?  (I’m going to use the format that Kristy used, she went through the treatment with me, so we have some uniformity.  And I thought she did a great job explaining her progress).

MS SIDE EFFECTS THAT HAVE DISAPPEARED SINCE TRANPLANT:

None – NOTE: I have PPMS, not RRMS, so how MS effects me is different than Kristy

OLD SYMPTOMS AND HOW THEY ARE NOW:

Fatigue – Much better.  I need a nap during the middle of the day to recharge, but I really think this is from the chemo.

Leg weakness – I am weak from being in the hospital for 5.5 weeks, and am getting stronger every day.  I do exercises from PT and walk daily.

Heavy Legs – This really does seem so much better.  I would almost say it’s gone, but let’s wait and see.

Bladder urgency – Much better, almost normal. 🙂

Leg Spasticity – I still suffer from this, mostly at night.  It’s not as bad as before, but I have had a few nights it was very painful.  Usually if I take a Magnesium supplement in the early evening, and then again before bed, it’s under control.  This had completely disappeared while I was in the hospital thanks to the steroids, but re-appeared as those wore off.

Toe drop – It’s still there in my right foot, but it does seem to be improving as I gain strength.

NEW TEMPORARY SYMPTOMS THAT CAN BE ATTRIBUTED TO CHEMO AND STEM CELL MOBILISATION:

  • Hair loss
  • Bone and joint pain
  • Fatigue
  • Hot flashes (hormonal imbalance from the chemo)
  • Muscle weakness (from long hospital stay)

The symptoms that bother the most are the bone/joint pain.  I have it all over, but I notice it mostly in my legs, (knees, hips and ankles).  It really is painful when I’ve been sitting or laying down for any period of time.  It aches to get up and get moving again.  So, just turning over in bed, or getting up from a chair is very painful right now.  I’ve heard this can last from 3-6 months, hopefully the lessor of those. 🙂

My gait seems to be improving, this is because the toe drop is not as bad.  I still walk funny and use my trekking pole, but I can see not needing it in the near future.  Most of my unsteadiness now, I feel, is from my muscles still being weak from the hospital stay.  So, with continued strength training this should improve as well.

What can I do now that I was not able to do before HSCT???  I walked 1 mile over the weekend!! And the last part was up a big ass hill.  I’ve not been able to do that in a couple of years, so a really big deal.  It did take me a day to recover, but so worth it. I was at PT yesterday and told him of my progress, I’m rocking PT BTW, he said that was great, but to hold steady at 1 mile for now.  So, slow and steady…   Oh, well, I’m still hoping for more progress in the future, and I won’t give up.

First time Thomas and I went out to eat.

First time Thomas and I went out to eat.

Yep, still bald.

Yep, still bald.

Hair is sprouting!

Hair is sprouting!

I want to thank everyone who has been there supporting me through this journey. Your prayers, positive thoughts, phone calls, messages and financial support has made this possible for me. THANK YOU ALL!!
VW

One month update – Fighter

Oct. 25, 2013

Trying on some new hair ideas.  It looks real, don't you think?

Trying on some new hair ideas. It looks real, don’t you think?


Tuesday marked one month since I was discharged from the hospital in Moscow. I had my one month blood work on Wednesday and it was all still within normal ranges!! YEA!! I’ve stayed pretty close to the house during this month, and limited visitors as well, I really didn’t want to take any chances of catching something from anyone. With my still new immune system a cold could really be hard on me and set me back. The local doctor has told me if I get a fever to go straight to the ER, she takes this very seriously. So, as stir crazy as I’ve gotten, I haven’t gotten sick either. I’m starting to get out more, this week I’ve gone shopping with my sister and out to lunch the girls another day. So, I’m slowly getting out there but still be cautious.
Enjoying football season.

Enjoying football season.


My sisters arrive to help me escape.  No, they didn't need to wear mask, but they are crazy.

My sisters arrive to help me escape. No, they didn’t need to wear mask, but they are crazy.


I didn’t drive until last week, my legs were so weak I was afraid I wouldn’t have the strength to quickly change from the gas to the break in a timely manner. Trust me, you wouldn’t have wanted to be on the street with me driving. So after a test drive around the neighborhood, I felt ready to hit the streets, and that I did. So watch out Little Rock, I’m driving again.

I walk several times a day, walking my dog a few times and than every other day I add a solo walk for distance. I’ve done this since I returned and slowly walk a little further as it becomes easy. I’m now up to 0.6 of a mile, and last night it was getting easy, so it’s time to go a little further. This is the same distance that the walk was around the block in our neighborhood in Florida, and I had not been able to do that in a long time. (In Florida it was flat, here it is very hilly). If feels great, my legs feel weak, but not like I’m walking with cement blocks on my feet. And I haven’t felt that way in several years. Then on Sunday and Monday, it changed, the cement blocks were back. I was freaking out, was the transplant already failing? It’s only been a month. But then Tuesday I woke up and they were fine, so I’m on the healing rollercoaster of HSCT. I’ve been told by others that this is normal, especially the first few months. In the hospital the spasticity in my legs went away, this was a nice surprise. Usually in the late afternoon, it would start and by the evening it would become painful and you could see my legs actually jump from the spasm. When they went away in the hospital I was pleasantly surprised and every morning Dr. Fedorenko would ask how my spasticity was, I would reply, “What spasticity?” Well, that was nice while it lasted, it’s back. Not as intense as before, but still back. I take a magnesium supplement and it takes care of it, but hope it will go away again for good. So, my ticket has been stamped and I’m going to ride it through, all the bumps and loops that come my way.

Next week I start Physical Therapy, and can’t wait to see how that goes. I know just may walking has strengthened my legs, but they are still very weak. If I am on the floor, I have to crawl to something sturdy enough for me to pull up on, not a pretty sight. I don’t know what I’d do if I fell on one of my walks, there would be no way for me to pull myself up. OK, I need to put that thought out of my mind and just not fall. I’ve also started a Plank Challenge. If you don’t know what the plank is, check out this link, awesome exercise and easy to do. http://www.youtube.com/watch?v=kiA9j-dR0oM So, I can’t keep up with the challenge schedule, but I’m still doing it and able to add more time everyday. Never Give Up!!

My energy level is better too. When I first returned I had to take a couple of naps a day, now I start to crash mid day and take an hour nap and then good for the rest of the day. So, improvements are happening, slow and steady.

Thanks for everyone’s support and prayers. I’ll post again in a month and hopefully will have some good improvements to report.
VW
Fighter

These boots were made for walking…

Sept. 5, 2013

Just had to share this.

I was walking last night and noticed, my legs weren’t “heavy” when I walked. This is huge, because this is how my legs have felt for the past 4 years. Like I couldn’t take one more step because my feet felt like they had been put in concrete blocks. My legs are weak, don’t get me wrong, but it’s different. I was walking up the street to check out some work they are doing clearing for a new road, and walking up an incline and then walking around looking at the site and it hit me, I’m just walking, I’m not dragging my legs. I still am using my stick for balance, I have only been home a week and a half, but this felt so good. I know I must of had the biggest smile on my face walking back home. I know as my legs get stronger this is only going to get better. I have such hope!

These little things mean so much as I continue to heal and get stronger. The thought of being able to go walking with my husband or even explore all of the great hiking trails we have in our neighborhood. All of the possibilities.
VW
These Boots were made for walking…

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