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.
 
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A Long Day.....

Yesterday was a very long day for me. I had my Data Review with the Attending Doc to get the official yes or no on the transplant. Well, the transplant is a go, but my tests were not all normal. My lungs are doing very well, which I am so happy about because I have had so many problems. It turns out that taking 20mg of Prednisone a day is really working for me. Finally something that works! My labs all looked good too, the problem is that they found a problem with my heart. We all know that the Novantrone has a side effect of doing damage to the heart and although it is not something that would be very obvious to me because I have not really had symptoms, there is a problem. The doctor called it a "Baggy Heart".

I have to admit that after hearing this I kind of freaked out. I mean I always knew that was the risk for taking the chemo but I don't regret that decision because it gave me my life back....or the best it could. I was doing probably the worst I have ever been with my MS before and was even classified as SPMS that was worsening and it reversed my MS enough that I am not considered a RRMS that is worsening. The doctor said that it does not change my eligibility for the transplant and the mortality rate does not change. What it boils down to is that they are just going to have to watch it closer than they probably would have and they are starting me on Lisinopril to help protect my heart and prevent the possibility of a spike in Blood Pressure.

After my appointment we attended two of the required classes....Food Safety and Managing Care at Home. I would not recommend having these classes on the day you get your results. I think for me it was just too overwhelming. After finding out about my heart, my first thought was "Am I making the right decision? Should I really be doing this?" but the reality is that I have felt good about this from the beginning and they do legally have to tell you every possible risk that may happen. It is not meant to scare me but to inform me of the worse case senario. And, she did say that the risk of death is not increased by the heart problem and she even said that if I take the Lisinopril for a year many patients' hearts heal themself. That would be wonderful!

The classes were very informative. Who would have thought to wash a banana peel or the outside of a Watermelon. Well those are the things I had to learn about. The thing is that when you put the knife through the melon any bacteria that is on the outside of the melon would get onto the knife and transferred to the actual fruit. Most peoples immune system is strong enough to fight even the smallest amount of bacteria that would enter their system because of this, however after the transplant and having no immune system that will not be the case for me. On average it takes 6-9 months for someones immune system to start building itself back up. Another things I found interesting is no Blue Cheese. If you think about it, it's probably not the most healthy thing to eat (after all it's made of mold) however it's so good! They actually had a patient who ate Blue Cheese against their advice and the mold grew in their mouth. Once again this is because the new immune system isn't strong enough to fight yet.

The Managing Care at Home class was more of an eye opening experience. This is going to be much more difficult than I realized. I think because I have done chemo (twice) I had this perception that I would be okay, not get too sick....after all I didn't with the other two. The reality is I'm gonna be sicker than I have ever been in my life. They tell you about some of the typical symptoms of Mucositis, Dehydration, Diarrhea, Hair Loss, and more. They went into such detail that honestly is scare the crap out of me. I was quite emotional about everything last night and at one point really questioned if I am doing the right thing. This morning I am feeling better. I just have to remember why I am doing this and how we will benefit when I make it through. And, if the worse case senario does happen to happen...well at least I did everything in my power to fight this damn MS!

Today I get my Hickman placed and tomorrow I start my Leukapheresis. I'm not sure how I am going to feel so I will probably not update again for a couple of days, but I promise as soon as I am up to it I will be back for an update. I hope you are all doing well. Happy Wednesday! :)

5 comments:

Jaime said...

I just want to say thanks for doing this study! For everyone that has ms we all appreciate your sacrifice and your courage! I only hope and pray for the best for you and your family!!!!

dgewhitney said...

I so appreciate your writing this blog. I recently heard about the study as well as reading alot about stem cells. Thanks for giving us an upfront view of the study

I hope we someday get to meet. as I also live in Seattle.

You are in my thoughts and prayers!!

Gretchen

kmilyun said...

I too send my thanks for doing the study. Wow you are way, way more brave than I!

I will be thinking about you and watching for the next update.

Jan

Courtney said...

Wow! Your fight and commitment to reverse MS are both amazing. Keep it up. You are going to do great!! Saying prayers for you!

Jaime said...

Thanks all. I appreciate all the thoughts and prayers. I have a good feeling about this study and am very excited, sometimes emotional but always positive that this will not only be something that will give me my life back and benefit me and my family but that hopefully this will lead to better treatments and (keeping my fingers crossed) maybe one day a cure! I hope you are all doing well. :)

Jaime


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I was diagnosed with MS in 2004, have been through all of the FDA approved treatments I qualify for and now am participating in the HALT MS Study. This is my story...my life with MS (among other things).

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