Hi Sherrile,
You may have read my intro post and the positive-crossmatch thread that Karol referred to (
to paris and Karol!), but I wanted to respond to give you hope!
First, I know exactly how you are feeling. The first time my transplant was scheduled was in August of 2005 - my sister was determined to be a perfect match, and we had scheduled the transplant months before - and three days before my transplant I found we were a positive crossmatch and everything was cancelled. I was devastated as well, and my sister had her world drop out from under her as well since she was mentally prepared and so wanted to do this to help me.
I will have you read the other threads to get the details of the path I took from there, but I would like to answer your questions about plasmapheresis. I had my transplant Dec. 5, 2006 and had 2 weeks of plasmapheresis prior to transplant and 2 weeks post. The number of treatments your son would have would depend on his antibody levels. I had access lines put in my neck (outpatient surgery - no big deal) that they used for the treatments. I had them in for 4 weeks, and never had any infection problems. The important thing was to keep it dry (I would tape press and seal wrap around it when I showered!). I would also have the dressing changed every other day. They did not want to use my fistula because the flow was too much. I continued to use my fistula for dialysis.
The plasmapheresis was sooooo much easier than dialysis. For one thing...no needle sticks. Also, it only took about 2 hours. Also, they are removing the plasma from the blood and replacing it with synthetic plasma, so it was not painful at all. It was normal to get a tingling sensation In the lips and mouth, but if it spread anywhere else it was important to let the nurse know. It meant that the calcium level was getting too low, so they would give liquid calcium through the IV. This was not painful, but it gives the strangest sensation that you are wetting your pants (you're not, but it feels like it!) I could eat and drink whatever I wanted while getting the treatments (in fact, the nurses always loaded me up with Lorna Doones!) Like dialysis, you can't use the restroom during treatments since you are attached to a large machine.
After my plasmapheresis treatments, I would have to go to the infusion center and have IVIg infusions. This would replace some of the "good" antibodies. This would take about 3 1/2 hours, and again I could eat and drink whatever I wanted. Since the IVIg bags were on an IV pole, I could wheel everything into the bathroom if needed (definitely a good thing post transplant, as you are supposed to drink tons of water and pee every 1 - 2 hours!)
AS you probably read, I had my transplant at Mayo Clinic. They have done hundreds of these transplants, and the transplant staff is awesome! I also just loved all of the nurses in plasmapheresis. It is a 1 to 1 nurse to patient ratio, and they are right there the whole time so you get to know each other well! Actually, everyone at Mayo is fabulous.
I am almost 12 weeks post transplant, and I am doing GREAT! My sister is also doing great...in fact, she left on the train this morning for Minnesota for her 3 month follow up appointment!
Please let me know if I can help you with information or reassurance. Most of all, don't give up! You and your son's situation is very similar to mine and my sister's, and I am living proof that there is great hope for you!!!
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