Hey all. I want to share my current plans to go to the Stem Cell Institute in Panama. I would have liked to have been able to post regularly in this thread to share my thoughts and plans before now. I tried numerous times before but gave up after spending too much time and energy trying (in vain) to express and articulate myself to my satisfaction. I'm posting whatever I can manage this time, regardless of whether or not it's to my liking.
For the past few months my father (who is also my caretaker) and I have been researching and have recently decided that we can and will go asap. I wish I could wait... wait for more data, more information to come out. I'm not even sure how I will survive the trip from NY to Panama but I fear the alternative of waiting. My health has rapidly declined over the last year and a half. I've been completely bedridden and need full time care over the course of this time and in just the last several months my condition has begun to markedly worsen on a seemingly weekly basis now.
I've already been approved to go. I (or my father) will be calling Monday to try to make an appointment. Already sounds like they are booked until about midway through July. I will be taking the soonest date possible. Wish I could go with others for a group rate (thank you for trying to get that together, Molly, and everything else you have contributed to this thread/forum.)
I will have four IV infusions, four consecutive days in a row, and then an intrathecal (spinal) injection on the fifth day. The SCI's protocol is typically just the four IV infusions, however, 10 (if I remember correctly) of Dr.Cheney's patients have recently had the extra injection into the spine. I think that it has been a bit over a month since then so the jury is still out on that (the benefit, if any, the risks, etc.) Basically, it's their latest experiment. (If you've been following along, their previous use of fat stem cells was not very successful.) I'm weighing out the risks and opting for the intrathecal injection. I figure I don't have much to lose. Even though I am not one of Dr.Cheney's patients, the SCI is willing to oblige (though I am assuming it will raise the cost; maybe not.)
Coming to price, then. I was told that the cost for "all medical, laboratory, and stem cell procedures" is $17,000. That was before I asked if they would be willing to do the spinal injection. I have to get more details on Monday but, again, I'm unsure whether this will change the price. They may use the same amount of stem cells but just spread them out over 5 instead of 4 infusions/injections. Not sure.
Also, I forgot to mention, for those that might be unaware: the stem cells that will be used are those recovered from donated umbilical cords. The SCI reps assure that they are "screened for viruses and bacteria to International Blood Bank Standards." (wonder what happens if you get some infected with XMRV? =/) The two cell types used are CD 34+ and mesenchymal cells.
Annnd my brain feels like mush. Hope I didn't miss anything. I will post updates with more info and answer any questions that I can when I have the chance.
'till then, take care, everyone.
(PS, I want to thank everyone who has taken the time and energy to share their own insight and experiences in this thread. It has been immensely helpful. Again, thank you.)
:Retro smile::Retro smile::Retro smile::Retro smile::Retro smile:
