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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Day 90 - 3 Months Post-Transplant!

Day 90! WHOO HOO! I almost can't believe my 3 month mark is already here. What a crazy 3 months it has been too. So many changes.....some good, some bad, most difficult. Today is the milestone where they say I can now eat some of the yummy things I have had to avoid, I'm able to eat out if I want (although I have to admit over the last week I have already eaten out....however I have been VERY careful about what I have had). Had I not had a positive CMV result this would also be the point where they would quit checking me for CMV.

So let's take a look back.....

Day 1 was on September 21st. I remember bits and pieces of that day. Here's what I remember. I remember the nurses coming in and getting the stem cells ready for my transplant. I remember thinking how crazy it was that these two very small bags contained 2 million CD34 selective stem cells and how amazing it was that something so small could potentially change the rest of my life, resetting my immune system and hopefully allowing my body to heal, or at least go into remission. My parents were there but unfortunately I don't remember Justin or Nathan being there, however I know they were. I don't know why I don't remember them there, and I feel bad about that, but there is not much I can do about that. I have a feeling one of the reasons I remember my parents being there so clearly is because of the fact that my transplant started at 12:52 p.m which was the exact same time I was born and they made a comment about how that must be a sign this was meant to be and my dad took a picture of the clock. I don't remember much after that....not for like another week or so. I have no memory of that time, none at all.

October 4th brought me my discharge from the UW Hospital back into the Pete Gross House. I remember being so happy to get out of the hospital after spending 20 days there. Being basically stuck in bed (although they are great to make sure you get up several times a day and walk)....stuck in that room, on that floor. I just wanted to go outside and I know my mom felt the same way. I have never been claustrophobic but after 20 days I was ready to get out and about again. Plus, by this point I was starting to feel better....wanted real food (there is a lot of good I can say about the UW Hospital, their food is NOT one of them. They have the WORST hospital food I have EVER had and that is actually saying a lot seeing how I have not only been in the hospital a lot but before I got sick worked in hospitals). Anyway, I don't think anyone was more happy to get out of there than my mom. They told us we could go home that Sunday and she was up bright and early and out the door to go get her car so we could pack up and go home (or to our Seattle home).

The next week I was quite sick and weak. I didn't want to eat much of anything as everything tasted like cardboard. I was dehydrated and was put on a liter of IV fluids each day. Something that I think really helped, in some ways saved me! I think that drinking as much as I did and having the IV fluids helped to push out some of those toxins and allowed me to feel better quicker, get my taste buds back, get my strength back. Then came the energy. I all of a sudden felt better than I had in years. I was out and about, walking around the block....I just needed to get out and walk. I couldn't hardly sit still. I had this new found energy and outlook as to what my life could be. It was quite exciting! For the first time I could see the light at the end of the tunnel and the possibilities that I had ahead of me. For once I could look into the future without the feeling of MS being up front and center (and I think I have done a good job of trying to live my life around the MS but that is just the thing, I have had to live around it, I'm now hopeful to just live my life!) Unfortunately this energy did not last. It turned out to be a false energy that is common after transplant due to the amount of steroids we are on. Once I came down on the steroids that wonderful burst of energy went away.

November 6th I got to check out of the Pete Gross House and come home. This was the best day ever I think. I had mixed emotions about going home but I was so ready to just get here and resume my life. Not to mention see my son and dog. It had been WAY too long. I was nervous about things like getting sick, the Swine Flu, having a new doctor that was not involved in this process...there were many things going through my head but it was time and so far things have been just fine. Sure I have had some ups and downs. I have not really been sick (nothing serious, really). I still get some of the symptoms....some nausea and diarrhea from time to time. I get tired really easy but I have had some complications as well (positive CMV, which is now believed to have been a false positive seeing how it was rechecked and negative, and has been negative since....bad reaction to IV meds, problems with my PICC line and blood clots). It seems like there is always something.

Over all I feel very blessed. I made it through this process. I have had very little MS symptoms (some of which I am not even sure is MS now that I know about the blood clot) and although I get tired easy I really am doing great. I have had to learn to let things go that really aren't that important when looking at the big picture, try to manage stressful things that come up better, focus more on the positive things in life and be grateful for this miracle that has happened to me. I have to remember every day that I can't push myself too hard (although that is a hard thing for me as I tend to over do things) and I must remember that this is a process that I must go through....taking the good with the bad and allowing my body to heal the way it needs to (all in time).

The best way to sum it up: Stem-Cell Transplants is not something you just do, it's a lifetime commitment. A commitment to change your life for the better. This is my hope for this transplant that just that will happen. My life will be changed forever for the better....MS free (and so far asthma improved). Here's to the next milestone, 6 months here I come!

I hope that you are all doing well, staying warm and having a wonderful Holiday Season!


Madame Hallie said...

Jaime, I loved reading your blog today. I hope you have a Merry Christmas and I will continue to look forward to your updates.

Herrad said...

Happy Christmas.

Blinders Off said...


I hope YOU enjoy the Holiday Season, Merry Christmas and Happy New Year.

Herrad said...

Please visit my blog and pick up your award.
Best wishes for this New Year.

Anonymous said...

Rather interesting site you've got here. Thanks for it. I like such themes and anything connected to them. I would like to read more on that blog soon.

Best wishes
Jeph Normic

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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 life with MS (among other things).

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