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The transplant works like this: The first day you are admitted to the
hospital to have central lines put in the veins in your chest to make the
blood tests easier. You receive one round of chemo which works like pokeing
a stick into a wasps' nest, This encourages the immature stem cells
to come out of the bone marrow and into the bloodstream.. The next day you
are released to out-patient status, and for the next 7 - 10 days you go to
the hospital every day for a blood test, line care and a shot of growth
hormone. This encourages the stem cells to grow and multiply. You are
watching your white blood count drop. When they bottom out and begins to
climb, that is the signal that your stem cells are ready to harvest.
You are hooked up to a pheresis machine which looks like one of those old reel to reel tape recorders from the 70's. It's like dialysis. The blood goes out one tube, the stem cells are culled into a bag, and the blood returns to the body. It is completely painless. My only complaint was that I was cold, so I got a heated blanket. I should have complained earlier. The point is it is non-invasive, and painless. Your cells are now frozen until your transplant date.
Phase two: you are admitted to the hospital. You have a number of rounds of chemo, depending upon your individual situation, to kill off the immune system completely. An antibody is given which acts like an industrial broom to catch any left over cells. That takes 5 - 7 days. When that is completed, the stem cells are reinserted into your body. That part takes about 1 1/2 hours. Ta-da! It's done! Very anticlimactic, really.
You are very weak for about two days. Compare it to being born. Everything has to restart. You have to be careful of what you eat, and you are on a neutrapenic diet: everything is cooked well. Well... In other words nothing raw. Trust me, tea and toast for a few days is just fine. Meanwhile, we are still measuring the white blood count, mixed with growth hormone shots to build up the stem cells. You are again waiting for the white count to drop and bottom out, and then rise. When it does, it means the stem cells have engrafted. The cells double and triple and quadruple, in about three days, and you get kicked out of the hospital, back to outpatient status phase three.
You have to hang around for about two more weeks, visiting the hospital twice weekly to check things out. If all goes well, you get discharged to go home. From start to finish was about two months.
I had been on oxygen 24/7 at the request of Dr. Traynor. She was not willing to risk any extra stress to my heart. Two weeks after the transplant, I weaned myself off the oxygen during the day. Six weeks later, I stopped using it at night. In the meantime, I was beginning to walk at my normal pace. My fatigue was gone. I lost about 30 pounds. My hypertension was gone. My skin began to return to normal The rash was gone. I felt fantastic!
The biggest improvement has been in the lungs. I can breathe!! I would say there has been upwards of 60% improvement over last year. This time last year, I could not walk 50 feet without coughing, and gasping for air. A flight of stairs was a major challenge. I had to go from working 5 days a week to 4. Now, I move around in a nearly normal state. Kayaking is looking good for this summer!
I wear gloves and a mask in public to protect myself. It has been 9 months since my transplant. I feel very much like I returned to normal. I still have some Raynauds, and my fingers are still stiff in the morning, but I don't drop things like I used to, and I can close my hands into fists. My face has returned to normal. I was told it would take between 6 months and a year for recovery. I am anxious to see what the next 6 months brings. But honestly, if this is as good as it gets, I'm thrilled. Anything else will be a gift - as if this whole thing wasn't!
Unfortunately, this procedure is not covered by insurance. You will have to fundraise. There are companies which help you to do this sort of thing. It is totally achievable. My committee raised the funds in 5 months with one fundraiser. Heath insurance will cover all of the outpatient portions, but not the inpatient. Our legislature is working on changing this. They are also arranging for the actuarials for the health insurance companies to see how much cost saving there is compared to maintaining a progressive disease.
The doctors told me just before the transplant I would be back to kayaking this summer. I really missed not being able to be on the water last year. I cannot wait to get out there! I can tell you that it was worth it to me to investigate the transplant and to go for it. It was, I must admit a little like leaping off a ledge and hoping God was there to catch me. He was, indeed. There must be pioneer blood in me, after all.
Gary Friedman tells it like this: "Very soon, people who are sick will go into the hospital, have a stem cell transplant, or some other genetically engineered product, and come out well. There are over 140 different diseases which can be arrested by means of a stem cell transplant. Some are in clinical trials at this point. They will all soon be available to the public. The frustration of the researchers is that it takes so long to get these techniques to the public. Part of it is FDA, part is funding, part is lack of people to participate in the studies. When the Diabetes trial comes out, which will be very soon, things are going to break wide open , since this is such a widespread disease.." (Continued) Page 4 of 5
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