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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The Good, the Bad, the Ugly.....a look back at transplant! (sorry, this is a LONG one)

Today is day 28 post-transplant and things are going pretty well. They are even talking about sending me home soon. That will be nice. I'm a little nervous of course, but they think I'm pretty much ready.

I think it's important for anyone who is looking into this clinical trial (which I believe is closed now, but of course FDA usually mandates a Phase III, so there are bound to be more at a future date) to really know what this is like. Unfortunately I can only account for some of it as there is about a week in there that I have no recollection of. The brain is an amazing thing when you come to think of it. I was SO incredibly sick and yet, I don't remember that part. My family, unfortunately, does. I'm sure that it will stay with my mom for a very long time.

As you are all aware, I was admitted on September 15th to the UW Hospital 8NE transplant floor. My chemo started that day. That first day was really a day of getting situated and then I just had the one chemo. The next 4 days had 2 different types of chemo twice a day and then on day 5 of being in the hospital I had 3 types of chemo (the original 2 I had the previous days as well as ATG, which is a type of Rabbit serum). I then had the last type of chemo and another ATG on the 6th day and the transplant on the 7th day of being in the hospital.

The transplant itself was actually the quickest and easiest part of the whole process. I had two bags of stem cells. They are CD34 stem cells, which are T-cell specific (if I am understanding this correctly). The whole thing really only took about a 1/2 hour. Quite amazing when you think about it. My dad took pictures of the stem cells, the transplant process, me and my bald head, LOL. When I get home and get a chance I will have him upload the pictures for me and I will post them!

The whole next week is what I don't remember. This is when things got really rough. Apparently at one point I quit breathing. Whether this was because of the transplant, the fact I have asthma that could have been exasperated or something else, we just don't know. I also had neutropenic fevers in the 105` range, shakes....my mom said my teeth would chatter. Of course there was also lots of vomiting and diarrhea. Basically she described it as being as sick as a person can get to death without really dying.

Now I don't mean to scare anyone by stating this but I think it is very important that anyone considering this be aware of just what you may go through. Of course with all things, just because this was my experience doesn't mean it would be yours. There are things that help however. Movement is VERY important. So is eating and drinking. I know at one point they had me on IV fluids both for hydration and nutrition. There are side effects that affect your taste buds and so eating is difficult, plus you can get sores in your mouth and throat. I remember having a sore throat but don't remember having a lot of problems with my mouth. From what I was told though, I did.

The best advice I could give anyone is to be strong. This is not to be taken lightly but what a miracle it is when you make it through. I do believe that there is a lot to mind over matter and having a positive attitude. From almost the beginning of this process this has felt like the right thing for me. Of course I did a lot of research into it, asked lots of questions, got as prepared as possible, put my papers in order (like wills and advanced directives), did a lot of soul searching and talked it over in detail with my family. For me it was 100% the right decision and although I know I still have awhile to go, I know in my heart it was what I needed to do for me. Risks and all.

The last week or so that I was there I remember sleeping A LOT. I remember being weak and tired more than anything but I was fortunate enough to have my mom there to keep me motivated to get up and eat, even when I did not want to. They really stressed getting up and walking because that helps to keep up your strength. So does the food. If you don't eat, you can loose muscle mass and you need that to remain healthy. As difficult as it could be to eat at times it is better to just have a few bites then have nothing at all. Also, once I was discharged and got home I really did not feeling like eating much because everything tasted like "cardboard". Or at least that is what we equate it to, I mean, who has ever tasted cardboard to really know? What I found though is that the more I forced myself to eat the faster my taste buds came back in and the more energy I had....the faster I seemed to recover from some of those side effects that were lingering from the chemo. It really is worth forcing your way through it.

Once I was home it took about a week for me to really start to feel better and now look at me. Okay, I know you can't really look at me, but I am doing great! I at at day 28 and amazed at how well I am doing. I have my moments of course, I mean, my immune system is kind of like a babies. It's brand new! But, I have more energy then I have had in YEARS. Now, from what I have been told, part of this has to do with the steroids and once I have tapered off there is a chance that the fatigue will kick in once again. Often times the first month people do really well because they have that false energy from the steroids. The second month is where things get a little shaky. For one you go home, which can bring forth all kinds of emotions. Here in Seattle it is safe. You have clinic visits twice a week, blood draws on a regular basis....basically you have a security blanket of sorts in the SCCA staff. When you get home you don't have that. What you do have however is an Oncologist, and before you go home they do make sure that you are set up. There are still weekly blood draws and regular appointments, it's just with your local doc, not the transplant team. Plus as you come off the steroids there are side effects that can happen. Gotta love the steroids.

As mentioned in the beginning of this post they are prepping me to go home soon. We are shooting for the end of next week but that will depend on if we can get everything done by then. Otherwise it will most likely be the first week of November. There are just a few things that need to be done to prepare for going home. For one I have to have an Oncologist at home. Unfortunately during this process my previous Oncologist left his practice and so I have to get a new one. Fortunately it sounds as if they can make a referral to the Oncologist who took over for my previous one. You see, when you get home you still have weekly blood draws as well as regular appointments. At least until day 100, then it's bi-weekly blood draws till 6 months out. There also is an exit appointment, called a summary review. This is where I will be given all my information as far as what meds to take till when, protocol information about future appointments, and so much more....I'm assuming. Basically the discharge so that I can go home with all the tools and information needed to be healthy! In my case however there are a couple other things that need to happen. I need to have my Hickman line removed as well as my port, and I need to have a new port put in. You see I did chemo for 2 years for my MS (the Novantrone) and so I have had my port in for almost 3 years. About a week ago my port gave out. Unfortunately I have so much scar tissue in my veins that they will need to put in a new port for all of my future blood draws. This is something I would much prefer to have done here, so they are going to make that happen.

I had my discharge appointments with OB/GYN and Nutrition today and am all set there, but I requested an appointment with Physical Therapy because I really want to achieve my ultimate health and in order to do that I need to remain active. I want to make sure that I am doing this in a safe way and so I'm hoping that a Physical Therapist will be able to give me some tips and ideas as to what I can do at home to stay active without over fatiguing myself. At least until my immune system is a bit stronger and I can really get out there! What I have decided is that I don't ever want to take light of my health again and that this is such a miracle and opportunity to regain my life that I am going to do all I can to live life to it's fullest and be as healthy as possible. Lots of changes are coming and as scary as that can be it is also VERY exciting! :)

Anyway, what I can tell you is that the staff at both the SCCA and the UW are amazing. They really know what they are doing and I could not be more pleased. Anyway, I will continue to do updates as things move along. I hope that this finds all of you doing well and that it gives you a look into what life has been like for us for the last few months. Take care!

8 comments:

Anonymous said...

Thanks for the straight-up details, Jaime. My parents will be reading your blog from start to finish, which will be critical if I get through all the qualifcation hoops. I just got back from Houston and a meeting with the stem cell doc and team. It went well. My first internet site upon returning home: yours!

-Dave

Webster said...

Yeah Jaime, with every ending comes a beginning. Isn't it odd/funny that they each can be both so exciting and scary all at the same time. You've been a real trooper through this and I hope the benefits continue.

The Pitter Patter Boutique said...

Wow, what a journey you've been on. Now I need to go back and educate myself as to why you decided to go this route. As you know, I'm new to this MS thing and I didn't even know that a stem cell transplant was even an option.

All the best to you. :)

Enjoying the Ride said...

Thanks for sharing some of the details of your adventure with us. I have PPMS, and am in a wheelchair full time, so I'm not a candidate for these trials. I'm considering going to Israel to get stem cells, but they don't do the chemo over there, so I doubt it works as well.

Again, thanks for participating in this trial and keeping us all up to speed on your experience.

Mitch

Jaime said...

Dave,

Good luck! I am glad to hear your first meeting went well. Please keep me updated as you go through the process. I have had my blog for quite some time but especially felt this was something that I should document because when I was looking into more information about this process, I couldn't find any personal experiences.

I hope I come across clear that we all respond different and just because this is my experience doesn't mean it will be the same for the person reading. There are many risks involved with the transplant process and I felt people who are considering it needed to know just how sick you get. There is even a risk of death and so I wanted to really stress the importance of looking at your whole situation and where you in life when making such a decision.

What I am finding and the stats are good is that once you survive the chemo and transplant the outlook is very good. My PA told me about two other MS patients who are doing great. One is 2 years and the other is 18 months post-transplant. Both have gone back to work full-time, they have NO signs of MS and one even had a baby. Their lives are great. That is what I am looking forward to and I pray that if this is the right decision for you, you will have the same outcome.

Take care of yourself. I look forward to hearing more as you go through this process.

Jaime

Jaime said...

Thanks Webster! I think you got that one right. I am SO looking forward to this new beginning, hoping it will be MS free. Each day I get stronger and although I know it really is a long process of recovery, I am so excited for the future. One of the things I'm now having to learn is how to think healthy.....this whole thing is somewhat of a miracle and I just pray that this study will lead to many more people getting their lives back!

I hope you are well. Take care!
Jaime

Jaime said...

Mitch,

I'm sorry to hear that you are not a candidate for these trials. I'm don't know anything about stem-cells in Israel so I really can't comment much on that. What I would say is that before traveling or doing something like that I would do a lot of research. From my experience the chemo is a big part of why this transplant works. You have to basically kill off your old immune system so that the stem-cells can go in an rebuild you a new one.

I am hoping that this trial will lead to many more treatments and maybe even a cure for all of us. Please keep me posted as to how you are doing. I wish you the best and hope you are feeling well. Take care!

Jaime

Jaime said...

Sarah,
My decision to do the stem cell transplant came with a lot of thought, prayers, and research. I was diagnosed 5 years ago and did okay my first year but once I started to progress, I progressed quickly. I did Copaxone, Avonex and Novantrone before the transplant. For me, the Copaxone worked for a while. I did it my first year I was diagnosed. However after my first major relapse it just did not do the trick anymore. I was taken off of it and eventually put on Avonex. I had a lot of side effects with Avonex including problems with my liver which in turn made me ineligible for the other interferons. During the 9 months I was on Avonex I progressed rapidly, having 4 major relapses and what the doctors at one point thought was a stroke. From there I went on the Novantrone and did really well with it. My MS slowed down for the first time. I did almost the full amount of doses allowed, however it is cardio-toxic and eventually did some damage to my heart. I don't qualify for Tysabri because of my history of cancer and so when I heard about this it seemed like my last chance to take control over my MS. I'm just over a month post-transplant and so far I am very happy I made that decision. It's not for everyone though as I had to do high-dose chemo, lots of side effects and well I was sicker than I have ever been. There are risks involved and so it is important to really look at the history and if the benefits would outweigh the risks. For me it did. For you or others it may not. Anyway, so there you have it....how I ended up doing the stem-cell transplant for my MS in a nutshell. LOL I hope that you are doing well. Please keep in touch!

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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