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.
Where to begin? Maybe the first of October would be a good place to start. As you are all aware I went to Seattle for my one year post-transplant visit, got my immunizations and did quite well. That was until the first Sunday in October. Almost exactly two weeks after my immunizations and a week after coming off of the post-transplant meds I GOT SICK! Urgh!
That Sunday was the 3rd of October, the day I got paid and we needed groceries. We were in the store for no more than a 1/2 hour when I started to not feel well. I told Justin I had to go sit down and to please go pay for me. The store is not that far from my house but in the short 20 minutes or so that it took for him to pay, us to get in the car and drive home, I had chills and a fever. Not good! I was told by the docs that when you come off all the post-transplant meds it is not all that uncommon to get a cold. Knowing this I thought that I has just come in contact with something, everyone's got colds right now and since my last labs looked good, this would be the test to see how I do. I didn't do too bad either. I was able to see my PCP, just to be safe, the first of that week, to be safe he put me on a Tamiflu and a Zpack because he thought I had the flu and it sounded like bronchitis to him. I almost immediately got better....except the cough that is.
By October 15th I was back in Seattle, had my second MRI (without any problems), was even able to manage the trip (almost 4 hours each way) without much difficulty. The following week I felt fine. I went back to the gym, figured my pesky little cough (because it really was getting better, or should I say it wasn't as frequent) was the last of my symptoms and I was good to go. Then I saw my Oncologist and although she was quite pleased with my labs and how I was doing, she didn't like the sound of my cough and sent me back to Seattle to see my Pulmonary doc. All this time my cough was getting better.
On the 28th we went back to Seattle and I saw my Pulmonary doc. Considering they have done pulmonary function tests on me but not actually seen me since right after my transplant he was quite amazed at my progress. In fact, he wanted me to watch how much of my asthma medication I had been taking because I have been on it my whole life (pretty much) and he thought I was using more than I needed. He explained it to me as when you have such a major recovery from something (I went from 36% lung function to 89%, which basically means my asthma is pretty much gone, amazing) that our brains are so used to having it (almost like a subconscious prescribed addiction if you will) that we still have symptoms and our bodies still think we need it. Anyway, to be safe, he sent me to the Allergy doc there in his office for a consult and testing and what was even more amazing is that I am basically not allergic to anything anymore. Okay, so I have lots of medication allergies and we are not really willing to try those out to see if I react but when it comes to animals, food and environmental factors....I'm NOT allergic. This is even more amazing since I was so allergic to pretty much everything environmental and when it came to animals, cats sent me straight into an asthma attack and horses caused me to go into anaphylaxis.
Amazing, in fact I think my docs were all amazed too! There have been reports of people who have transplants getting better when it comes to their asthma and allergies but mine went away! Or so we though. And, don't get me wrong, both are SO much better than they were before and that is a side effect I am so incredibly happy about. I NEVER would have thought when I went in for this how many aspects of my health could improve. I mean, we all hoped for the MS to go into remission, and thanks to my Bactrim/Menigitis/Stroke situation last February it's now kind of hard to know if the symptoms I do have are MS related or because of that reaction. Either way I am still better than I was before and that's something wonderful in itself.
So fast forward to this past Thursday, November 4th, pretty much one month from when I got sick the first time and this stupid cough started. I woke up with a sore throat and goop in my right eye. Otherwise I felt fine. I called my PCP, he got me right in and informed me that I have developed a Sinus infection and pink eye. PINK EYE!? I didn't think adults got that. And, unless they are around small kids, typically they don't but I was reminded by my doc that I just got my immunizations a little over a month ago and well, babies get them right after birth, so my immune system is like a babies. Also, he reminded me that now that I've had some immunizations and come off the post-transplant meds it will take a while for all the antibodies to do their job. Okay, so that makes sense. I thought the first year was the worst when it comes to being careful but in all reality, although my immune system is stronger than before, it's still like a babies and so I still have to be careful. He put me on Cipro eye drops, which cleared up the pink eye with no problem but he also put me on a Zpack for the sinus infection.
Now, I'm not a doctor but I've been around medicine long enough to know that if you are taking your meds and getting worse, they aren't working. That's exactly what happened to me. Thursday I was great, just a bit of a sore throat, Friday I was okay...until about 4pm that is. I then developed a fever of 101.8 or so. I called my doc but really was trying not to worry too much because I really didn't feel that bad. I just knew it was Friday and I had a fever. I know it can take a couple days to start to see a difference after starting antibiotics. Well, I've determined the Zpack is not my friend. Saturday morning wasn't too bad but I was only keeping the fever in the 100-101.5 range by taking Tylenol every 4 hours. Saturday afternoon I started having higher and higher temps and so I told Justin this is nuts, after 3 days of antibiotics (especially since you only get 5 days worth with a Zpack) I should be getting better, not worse. I finally told Justin I thought something was wrong because I was freezing (or so I felt) but I could feel the heat coming off my skin. We took my temp and Justin called the ambulance. My fever (even with taking Tylenol every 4 hours) was 103.5. NOT GOOD!
Turns out I have pneumonia. Um, wasn't that one of the immunizations I got a month ago? Yeah, it was. Anyway..... I was in the ER no more than 20 minutes, I don't think they even had my chest x-rays back yet when they told me I would be admitted. I've been here since. I had a raging infection and the Zpack obviously was not strong enough to kill it. I was put on IV antibiotics and then put on isolation until they could figure out what the underlying infection was. Since I have had my cough for over a month and my immune system is still so fragile the doctor wanted to rule out things that were infectious like Pertussis (another immunization I just had) and MRSA. Fortunately the IV antibiotics have helped and my WBC's are back in normal range. The cough however is just as bad as it ever was, and they have not gotten all the results back so they still don't know what type of bacteria caused all this. What we do know is that I am improving, I am responding to the stronger antibiotics and as of this morning I am not contagious. Still, until they know the source of my pneumonia (which better, still has not gone away) and what is making my cough so bad I'm stuck in the hospital. Fortunately, the nurses and doctor's have all been wonderful.
I am so ready to go home at this point (there's no where better when you're sick) but my body is still not quite there. So, for now I will be at the hospital doing my best not to go crazy from illness and boredom. :) As soon as I learn more, I will update again. It has occurred to me that even if things are going well and I don't feel like I really have much to say, I should still update more often. I hope you can all understand that. So that's my New Years goal....I'm saying it now. LOL I want to get back to sharing all the happenings of my journey with MS and everything else medical that comes my way. I know it has been quite the first year, unlike anyone else's experience and that's not probably saying much since there are not too many of us. I do think it's important for you all to know that there are not just these hiccups, but good days too and they are becoming more and more thanks to this transplant. There is a reason they follow us for 5 years and as optimistic as we all are, there are bound to be some issues along the way. I just have come to realize that getting important marks (like 6 months and 1 year) are great but I almost feel like my blogs been a little bipolar this past year. I have not really been steady with it and so you have gotten the really good, grateful stuff and then the hiccups...not so much of the in-between, even if those in-between posts are small...which would be preferable (my posts over the last year are like reading a novel, they're so long) I now realize that a short post at least once a week that says what's going on would be good. I will warn you now, I hope for them to be quite boring, filled with days at the gym, having the ability to do just a little more each week and then the good stuff in another year when I'm fully in remission. Okay, okay....I'm getting ahead of myself but that's where I want to be. Most other HALT patients have gotten their lives back to the pre-MS days (or that feeling) in about a year or so, due to my complications it will take a little longer but in the end we are all going for the same thing. A better quality of life. And, hopefully for those of you out there just waiting for something better to come along, it's nice to know there are people hard at work to make that happen for us all!
Sorry about the long post! I have had a busy month. Take care and I hope this finds you 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)