This is MY journey with MS! I give you my thoughts, feelings, hopes, and prayers. My wish that one day this disease will come to an end. That one day there will be a cure. For now, I hold on to possibility. I HOPE this will help and inspire not only myself but others.
So I want to start by saying that A LOT has happened this past year and I know I have not been the BEST about updating. I'm sorry about that. I would love to have had the energy to be able to update every day, or every week like I used to. The thing is, this past year I have really been doing my best to focus on my health, following the transplant protocol to a T and getting healthier. Now I know I have had my fair share of complications....I actually think I'm the only one in the study to have such complications BUT in MY personal opinion I have to say "THE TRANSPLANT WAS A SUCCESS".
Okay, so I am not a doctor, and I don't have the ACTUAL data to be able to determine that but here is what I, as the person to have gone through all this, knows.
Before my transplant I had a variety of medical issues. Each of which were quite severe cases. I will start with my MS, for that is why I am here, created this blog, and ultimately did the transplant. I was diagnosed 6 years ago, went through all the FDA medications I could take and despite that I continued to progress. I have spent time where you would never realize something was wrong as well as time having to use a cane, walker and even time in a wheelchair. I had to quit working because my health needed to be my priority. And I have had so many hospitalizations over the last 5 years that you'd think that was my second home (a quite expensive one if I do say so myself).
Then there is the Asthma. My asthma was SO bad that it really didn't take much for me to have problems breathing. I went through 3 albuterol inhalers a month as well as had to take a variety of other inhalers and oral medications each day just to make it through the day. In fact every 4 hours or so I had to do a nebulizer treatment and if I were to travel, I had to take a portable nebulizer with me so that I could do treatments in the car. I can't even begin to explain how many times I have had to be rushed to the hospital because my breathing became so bad that even 2-3 doses of nebulizer solution as well as all of my rescue inhalers did NOTHING to help my breathing, usually I would require a heart neb (which is a much higher dosed nebulizer ran consistently over several hours) with steroids and sometimes even epis, just to get my lungs to relax at all. It really was insane and I was convinced that my Asthma was as big of an issue for me as my MS was.
As if those two were not enough, I have cardiomyopathy as a result of the Novantrone, liver and esophogeal damage done as a result of mediation I took for my Ovarian problems in 2001, arthritis and osteopenia as a result of all the years of steroids used to treat the MS and Asthma. I had B Cell Lymphoma in 2005 and Nevoid-Basal Cell Epitheleoma (now known as Basal Cell Carcinoma) when I was 11. I tend to have high blood pressure and a high heart rate, when on some medications I get high blood sugars and I am allergic to most everything I have ever been tested for. In fact, I have had more than one rare allergic reactions to medications, not just seasonal allergies. Last February I was the 28th person EVER to have a severe reaction to Bactrim, which is otherwise a very commonly used anti-biotic, in which I developed Meningitis not once but twice.
So where am I going with all this? Here is it. I am FINE!!! I know I have A LOT of work to do but it is no small miracle that despite all odds (including a stroke during my time of Meningitis) I have done better this past year since the transplant than I have done in YEARS! The HALT MS study's purpose was to stop the progression of MS. It is not meant to be a cure. However, for me, in some ways it has been. No my health problems have not gone away, BUT there are some remarkable evidence to suggest that this was VERY MUCH A SUCCESS.
For any of you reading this who have MS, or know someone with MS, heat intolerance is a HUGE issue. Before my transplant I was unable to function AT ALL in the heat. In fact in April of 2009, I fell and dislocated my shoulder, fractured my elbow and my wrist....all because when my body would get over heated (I didn't even have to feel like it was hot out) my legs would give out and I would suddenly fall. No warning what so ever. In fact, I have been known to break a sweat in 20` weather, when there has been ice and snow on the ground, all because my body temperature would react that way. In the last 5 years (since I learned about cooling vests) I have gone through 3 cooling vests, a number of cooling headbands, bra inserts, pillow cases and neck bands. This year I have NOT, once again I am going to repeat, I have NOT needed to use any cooling supplies. In fact, I was able to spend a day at the river in 105` weather with nothing more than bottles of water to drink. AMAZING! Anyway, I could go on and on about how it's helped my MS but that is one of the most notable things I could describe to you.
And that's not all. See, unlike many of the others, I have dealt with many health problems for years. It is MY personal opinion that ALL of them have benefited one way or another from this transplant. My asthma has improved so much that I no longer need the nebulizer, I'm down to one albuterol inhaler a month and for the first time in I can't remember how long I am able to exercise. I can go to the gym, do two cycles on the circuit weights, use the treadmill and bikes all without needing a cooling vest or inhaler. My last round of testing shows that my ejection fraction rate is better, my BP has gotten better, my heart rate (even though still high) has even gotten better. I really don't see any area that has not improved.
Now, having said all that, one of the most amazing things to me (which may or may not be transplant related) is the fact that with virtually no immune system (since this did happen post-transplant) I was able to develop severe Meningitis, have a stroke, a mild case of Meningitis....all of which caused it's own problems....and although it was quite a recovery, I have done just that, RECOVERED. I am not sure if I would have been so lucky before the transplant, honestly. I mean, I went for a week without being able to talk at all, it took me about 5 months to be able to walk without a walker but here I am and although I can tell that there is still a lot that needs to be done, I am in absolute amazement that I have done so well. It has not been easy and is not for the faint of heart by any means, but I really think these doctor's are on to something!
I still get tired and my illnesses are not completely gone, but I am better than I have been in YEARS and with each day I only get better. This transplant may not have CURED me, BUT it DID give me my life back! For that I have a LOT to celebrate as I approach my 1 year mark.
So, here's to the best and brightest future for all of us and a VERY BIG THANK YOU to all of the doctors, researchers and legislators out there who continually fight to find us a cure!
I promise it won't be so long the next time I update. My 1 year mark is September 21st and I go to Seattle for my 1 year appointment, which include immunizations, on September 16th & 17th. After my appointments I will update again.
Take care. I hope you are all well!
- Accelerated Cure Project for MS
- Allison Shaddy: MS & Your Feelings!
- Consortium of MS Centers
- Cure MS Now Research Fund
- Face of MS
- Heuga Center
- International MS Support Foundation
- Maureen Manley: Spirit in Motion
- Montel Williams MS Foundation
- MS Active Source
- MS Association of America
- MS Complementary & Alternative Medicine
- MS Foundation
- MS International Federation
- MSplus Foundation
- MS Watch
- National MS Society
- Race to Erase MS
- Rocky Mountain MS Center
- Top 10 Sources (I'm #3)