Tyson, Have you gotten a copy of the patient manual that they send out with the intake papers?? If not call and ask them for one. They can email it to you. It covers everything from A-Z including the risks/benefits/statistics. It is most assuredly the goal that you lead a nearly normal life. The goal is to have your defective immune system destroyed and your body build a brand new one that will not attack your body as your current one does now. Thus you no longer have MG. Does that mean that you can't have that rogue cell that will kick the new system into overdrive?? NO. There are no garuntees at all to any of it. As to the risk of infections, yes that is a no brainer. BUT you will be tested from head to toe including a dental check for ANY signs of current issues. Those would have to be treated prior to undergoing the transplant of course. And after the transplant there is a protocol for checking your blood counts on a regular basis until your white count is once again back to normal. You will be on antibiotics to prevent most infections after the transplant. There is a lengthy recovery time involved as with anything, chemo, which is what you will get is hard on the body. So expect a good few months to take things easy. But if you are like me, you need that time to rebuild your overall strength that you have lost from the MG itself anyways. So is a good time to do both. The success rates to this have been high so far. As you know. They are strict about who is able to do it and who isn't because they are still under FDA scruitiny and must submit candidates to their "board that is ensuring compliance with all study components" Unless you have that positive blood test they won't allow you to be in the study. Again, all of this is in the paper work that they can email to you. I know that was an issue earlier for you concerning the protocol.
As to what to do?? No one can tell you that. You have to make that choice for yourself. None of knows how sick or well you are with the MG or how it effects your life. Only you can know that for sure.
I can share with you my opinion-----I am very much disabled now. I can barely make it to a chair to sit up. I am currently working with therapist to sit on the side of the bed and just dangle for 15 mins every two hours and that is a LOT for me. But more than I could do not so long ago. This past 15 months or so I have been relegated to living in a bed. I want more. There is a chance with a reboot to have more. So I am planning on working on getting that done this year. But I want enough strength to walk across a room even with a walker and not be dog tired when I get to the other side. When I can do that I am going for the reboot.
I tell you all of this for a reason. I wasn't this bad until my 4inpatient stays last year this time. I lost soooooo much ground then. And have not gained it back. Know what??? I have been considering this reboot for a few years now. Back when Hopkins was the only place doing them. I thought oh I'm not that bad. I can build up and get stronger. I can ..........insert numerous reasons as you like. Basically I messed up big time. I waited so long that now things are to this point. I didn't take the opportunity while i was "more well" and less "disabled" from it. I regret that big time. Every time I sit and dangle on the side of the bed tapping my feet I regret it. Everytime a new milestone comes for the kids or another anniversary for dh and I rolls by, I regret it. What could I have been doing this year??
We moved with DH job over a year ago to this new town, I have seen nothing of it. I can't go to the beach. I can't swim in the gulf. I can't shop or sight see any of it. What I have seen has been from the back of an ambulance 8 times though. and a handful of visits to the doctor's office. That's it. Can't even go to walmart. (and that is saying something when I wnat to go to walmart because I hate walmart with a passion, but just to be able to go) I have a wheelchair, but by the time I visit the neuro I have enough energy to get back to the house and transfer to the bed for a nap. Not a life at all. Imagine if I had done the reboot when I first had the option?? Where would I be today?? What would my life possibly be?? REGRETS. I waited. The worse you are when you have it done the less you can expect to regain. Oh I'll regain a lot, but will it be enough to live that "near normal" life where I can go and do?? My body has atrophied much in this time. How much of that can be rebuilt?? Some, I am praying a good deal of it. But I also have to expect that a 50 percent improvement would be the best I can hope for now. Yes that is great, but had I done it earlier how much could I have gotten back?? I will never know that.
I have a friend who had a reboot done, she is doing fabulous. Her MG is almost non existant in her life. She still takes her meds and such. But she is living a good life. Getting back to her "nearly normal" ways. But she did it before it destroyed her body.
It does work. It has a great success rate. There are several online accounts of the reboots, just check into finding some.
Feel free to PM me if you'd like to chat.
But if I had to do it again, I'd gotten it done a long time ago.
Hope this helps you in your decision making. Again, we all have to deal with life in many and varied ways when it comes to the MG, so just pray and search your soul.
Deb