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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This is the week....

So last time I wrote I mentioned that everything seemed to be moving along. That is very true! In fact this week I will travel to Seattle for my first actual pre-transplant visit. Thursday it all begins with a MRI. Next week I will then travel back for an appointment with the study Neurologist and the (dreaded) lumbar puncture. The week after that (I check in August 4th) is when I will have daily appointments to test practically every part of me to make sure that this is still a good idea. Basically, it is necessary to make sure there is not some underlying issue that would prove problematic with the transplant.

So....for those of you who are reading this and thinking, wait?! What? I understand. I know I have not been on my blog for a while and I have not been the best about keeping it updated. I have no excuses really, only that after making the decision to go through with this study I decided that I would take advantage of the time I have and make the most out of it. It's silly really, since I should have been living my life to its fullest before this came up, and I think when it comes to family I have been pretty good about that. BUT, I decided there were a lot of things I wanted to do (fun things) that I have just been putting off. And, of course it's not like I could just go out and do everything on my bucket list in a couple of months, but I figured I sure could go do a couple of them! So for the last couple of months I have been out having as much fun as I can with my son, my family, my friends....and yes, even pushing myself to cross off a couple bucket list items....and it's been wonderful!
Okay...back to the real reason I am posting. Transplant news. About 3 weeks ago I got a call that they were ready to schedule me to come over for all of my pre-transplant testing. They wanted to do it in July but I just was not ready. They felt based on my situation there was not going to be any problems with the insurance approval and instead of waiting for the approval and then scheduling they would get things set up in advance. So after looking at schedules and learning more of what would be done, my date was set. August 4th I check in to the Seattle Cancer Care Alliance at 9 am. I will then have blood work done (they test for pretty much everything I think....make sure all systems are a go) and then I will meet with the transplant nurse to get my schedule of appointments which are to take place over about 2 weeks. From what I have been told I will not only have blood work but a bone marrow biopsy, pulmonary function tests, echo cardiogram, EKG, MRI's (2 over a 3 week period) and a spinal tap (MRI & LP are to be done before 8/4). Once all of this is done, I will have an appointment with the transplant docs (somewhere around the 19th of August is our best guess at this point) where they will then go over all of my results and determine if the transplant is a yay or a nay.

Assuming all this goes well (which at this point, with all the tests I have been through, we would all be shocked if there were something to come up we did not know about) then they will schedule me to have a Hickman cath placed and from there they harvest the stem cells. I will then have a week or so of just hanging with the family and waiting. From what I have been told, the stem cells have to sit for about 15 days to make sure they are viable and disease free. Once that time has passed I will then be admitted to the UW Hospital where I will undergo 6 days of high dose chemotherapy to basically kill off my current immune system. From what I have been told, my blood cells will basically be undetectable. Once that happens they will then hang a bag of my own stem cells and transfuse them back into me. From here it can take anywhere from 10-21 days to have normal blood counts. On average it is 10-14 days but there have some whose body needed 21 days. Once my blood counts are in normal range I will be discharged. After discharge I will stay in the area for a time. I will have daily blood draws, doctors appointments, and be on an IV. The whole process can take a few months and I have already gotten permission to take my laptop to the hospital, so I plan to make updates and document this as thoroughly as possible.For now, I am going to have as much fun and time with my family as possible. As much as I feel positive about this, there is a risk involved and I don't want to make light of that. Also, even being successful....I will pretty much be quarantined (with the exception of doctor's appointments) and well that is just no fun. I'll tell you what though...I really look forward to in a year or two having this brand new immune system...free of many of my health problems, free of a life of relapse after relapse. Now wouldn't that be nice? I know this is experimental, and no one really knows how well it will work, if it will work for a specific person, if it work's if it will last, but I feel that if I get even a part of my life back, that would be wonderful. And, maybe, just maybe, this will be the beginning of the end of MS! :)

21 comments:

health is wealth said...

awesome
my feeds

maria said...

best of luck on your surgery! i hope all goes extremely well.

Onanite said...

About the lumbar puncture, don't worry about it. I had one done with no drugs and it was a breeze. Good luck.

Onanite

Webster said...

Jaime, I know you did not come to this decision lightly. Being young and with children I might've considered this option were it offered to me. Alas, I didn't and it wasn't, but good luck to you on this venture. I look forward to following your progress.

nyght said...

Really Adventurous.
nyght
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Andrew said...

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绯雪千夜 said...

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maria said...

best of luck! i hope this IS the beginning of the end of MS, and I'm glad you're so hopeful. have a fantastic rest of the week!

Jaime said...

I did not even know they were doing such things. I really hope all goes well for you!
I also have ms and my name is also jaime! It's a small world!!

Marci's World said...

I was on my blog and clicked NEXT BLOG at the top just to see what was out there. Your blog popped up today. I was moved teading your post. I will be following your progress and praying that you find healing - physical and any other kind you need.
My family and I see an herb Dr. here in L.A. that is fabulous. Really amazing results in dramatic areas. I am reading that your immune system will be compromised. He doesn a lot of work in that area - cancer, too. I'll just leave you with his website - he is very responsive if you write.
www.mmvbs.com
I'd be happy to talk to you if you are interested in seeing him down the road. You'd be welcome to stay with me if you choose to come down here - I believe in him that much!!
Wishing you wellness,
Marci

yamuna, yogini said...

You take care and be brave. What we think we become.

Farhana said...

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jammanora said...

I was adding to my blog about hep c and i found yours-you are a very strong and passionate person to be doing so much for your family, yourself and society in general-keep on going, keep on going

ed@houstonrealtyadvisors.net said...

Google MMS, its amazing stuff, it has help me with some issues..

Ed

Have Myelin? said...

This is amazing. You are a pioneer and I hope this works out just as intended. I see no reason why it shouldn't.

I will be thinking of you. :-)

Jaime said...

Thanks everyone for your support. I really appreciate it. :)

Jaime said...

Onanite, I wish I could say that was my experience. How long ago was your LP? I had one done 5 years ago when they were first diagnosing me and it was HORRIBLE!!! The doc was great, it turned out I have a slight curvature in my spine and so he had a hard time getting in. I ended up having to get it done with an x-ray machine to guide them in. That part was not bad though....for me it was the after that was so horrible. I got the spinal headache and even had to go in for a blood patch. It was not fun.

Jaime said...

Jaime, thanks for stopping by. This whole study is experiemental (they are only taking 25 people in the US) so I am really excited to be a part of it. This is actually the Phase II of the study. The first phase was started about 6 years ago. I had no idea at the time that they were doing such things here in the US, however I did know about similar studies in the UK and Canada. I hope that I do the whole process justice with how I update. I am really hoping this will be the end of MS as we kknow it. Wouldn't that be nice? :)

Jaime said...

Marci, I actually have a ND that I see in Seattle. She specializes in neurological disorders. I think it is important to explore all avenues when it comes to our health. A good balance of medicine and natural things such as herbs, supplements, diet and exercise is always a good thing. I love my ND! I will check out the website you left for me and appreciate your input and openess. I don't get to California too often but it is on my "To Do" list when I recover from the transplant. I have friends and relatives there. Take care and keep in touch!

Jaime

Jaime said...

Ed, I googled MMS and all kinds of stuff pulled up. I am guessing what you are talking about however is the Miracle Mineral Supplement? Just want to make sure that is correct. I am always open to new options but of course feel it's important to discuss anything new with my docs. I have not had the chance to really read up on it, but I will. I am glad that you have found somethign that helps you. Thanks for stopping by and 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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