Baby Steps…

Yeah, I’m back! I’m sure you are all wondering how it’s going. The fact that I am too busy to type this up should say a lot! It has been almost 7 months since my transplant and I am writing about my 6 month check up…

So, here we go…on May 23rd-25th, I had my 6 month check up with Dr. B (the neurologist) and Dr. Burt.
My husband and I decided to go on a Monday to be there for my MRI and blood work appointments on Tuesday and my meetings with the doctors on Wednesday. We left in the afternoon and got there around 5:30pm. We checked into our hotel…the Omni which is very nice and just a short walk to the hospital. This hotel is one that gives a discount to transplant patients…so this was even better!

Before our trip, we planned to meet with two of the other girls that I met while in the hospital. They both had the transplant for MS too. One of them was in a wheelchair before the transplant and I have to say…That girl is walking!!!! And, she is walking very well! The other girl had a lot of sensory problems and she says that it is so much better now. She didn’t really have too much problem with walking which is why, when we first met, I wondered why she was wearing heels. It goes to show that MS is so different for everyone and sometimes when you look at a person, you may not be able to tell that they are having such a battle going on within their own body. Here is a picture of them with me:

Me and my Stem Cell Girls!

So, I say this with the kindest of words to those people who want to dent someone’s car door because that person has the nerve to park in a handicap spot…just because you don’t see it does not mean it is not there!!!!

Sorry, I had to get that out of my system!

Anyway, we all met along with another girl who is in the study and will be crossing over to the transplant arm. We all had a great dinner full of some unique and somewhat great memories. I am so happy to have found such wonderful and understanding friends through all of this. I love you girls…

Tuesday was my MRI day along with some blood work…fun, fun… ;) This time, my MRI went so well! They put the IV port in my arm before the MRI without any problems. In fact, the guy putting the line in was so fast, I was in shock! It was done in seconds. They gave me the choice to have headphones for music or just earplugs…of-course I chose the music and told them not to put any sad music on or I may cry. They put on some nice hard rock for me. I mean, there is nothing like some Kid Rock, Nickelback, or Eminem to put me in an awesome mood. Of course, this music also makes me want to work out at the gym, so sitting still in an MRI machine was a bit tough, but nothing I could not handle!

After my MRI and blood work was done, we walked over to see another patient (Marc) who was having the transplant and was actually in the hospital on the same floor I was on just 6 months ago. He is a hilarious guy with a great sense of humor and just had us cracking up. We spent some time with him and his wife and also met another patient and his mother who stayed next door to Marc. They were itching to go home and I can understand that because on day 7, post stem cell reinfusion, you are just ready to go home. I went home day 10 post reinfusion and found that Marc also went home on day 10. It seems like 10 is the magic number nowadays…

On Wednesday, we went to visit Dr. B (the neurologist). He did an evaluation and determined that I was definitely stronger. He also concluded that my work in physical therapy needed to continue to help my right leg which took a huge beating from the MS monster. Dr. Burt also thought the same about my right leg. But, the best news was the MRI finding which showed no new or enhancing lesions. You see, the lesions are the things eating at my myelin which covers my brain and spine. When it is not enhancing, that means that the disease is not active and is not causing any relapses. The fact that they found nothing new or enhanced means a great deal to me and reinforces the success of this transplant.

So, to sum this up, I do NOT have active disease. I was told that this will continue to be a rollercoaster ride and that I will have good and bad days. I was also told that a year from now, I will be doing a lot better. The doctor even feels that in a year from now, I will be back to normal. This news is so reassuring and when I came home and told my mother-in-law (who watched our kids during this time); she said that it’s too bad I can’t just call Dr. Burt to hear those words whenever I am having a tough day.

I have days when I feel like the disease is just stopped where it was which means I feel like I did before the transplant. That is what this transplant said it would do at 100%. I think it is also very important to note here that this means the disease is not getting worse at all. I do not take meds for my illness and the fact that I have not needed steroid IV since July of 2010 says a lot. On that same note, I also have days when things are going so great and I can’t believe how much I can accomplish in just one day. Remember, I used to wake up and choose the ONE thing I would do that day. Now, I don’t really worry about it. I can do several things in one day now and am so thankful for that. People ask if I would do this over and yes I would definitely do this over again. Why? Because I know that I could have been in a wheelchair right now. I also know that it took me 8 years to get as bad as I was and it will take time to get better. I believe very strongly that the key to reversing this disease post-transplant is to be diligent in physical therapy. Don’t just think that once the transplant is done it is smooth sailing from that point on…there is a lot of work that goes into getting better.

Baby steps, just baby steps…

4 Responses to “Baby Steps…”

  1. Marc Coppins says:

    That is just awesome to hear! It’s giving me something to look forward to!

  2. Charlotte says:

    Dr Burt’s office sent me the link to your site. I obviously have a family member that is recenly diagnosed 1/11 and this is something that I believe in completely. Thank you for posting and for the website and updates. It really does give peace of mind.

  3. Natalie Stevens says:

    Lisa I am crying like a waterfall right now! Tears of joy. i just read your post and I am sooooo happy for you. I am at a loss for words. I love you and your strength.

  4. Ariel says:

    Lisa, you are strong in so many ways. Stay positive as you continue to get stronger. I wish we lived closer to give each other support and friendship.
    Your Special Stem Cell Sister

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