Dear Jobe -
My son was 22 when he was diagnosed with CIDP. He was diagnosed quickly, as it sounds like you were and was doing o.k. with IVIG treatments every 3 weeks. He did a lot of on-line research when he was very sick and found Dr. Burt at Northwestern in Chicago, who is doing a clinical trial on CIDP using stem cell transplant. He decided this was what he wanted to do, to be free of IVIG, all of the cost (although we had great insurance), time and the roller coaster ride of the disease of going up for a week after the IVIG treatment, having a good week and then going back downhill the week before the treatment. It took over a year for him to be accepted into the trial and work everything out with insurance, but I accompanied him for 6 weeks during November and December to Northwestern in Chicago for a stem cell transplant under the direction of Dr. Burt. My son is patient #60 for this clinical trial for CIDP. Dr. Burt has treated over 400 MS patients with this treatment.
If you are interested in my son's story - check out his youtube videos. Just put coloradopaco in the search box on youtube and you should find it.
My heart breaks for you. While older than my son, you are still a young man. While it is not known yet if stem cell therapy is a "cure" for CIDP it seems promising. While my son will never be completely back to what he was before he acquired this disease because of the damage already done to his nerves, it looks as though he will not get worse. This is a clinical trial with some risk, but he felt it was riskier not to do it.
For three weeks in November, my son and I were in Chicago and he was an outpatient at Northwestern after one night of being an inpatient to receive chemotherapy to stimulate the growth of his stem cells. During those three weeks, we lived in a hotel, he got his second to last IVIG treatment, went sightseeing in Chicago, visited my daughter who lives there, my older son came down from Wisconsin to visit, and he underwent various outpatient procedures. The week before Thanksgiving he had his stem cells harvested. It was an all day procedure, but I was able to be with him during most of it.
For Thanksgiving, we went for a week to my husband's family in another state.
Then it was back to Northwestern where my son was an inpatient for 16 days. I was able to be with him every day, even during the transplant procedure itself. They killed his immune system with chemotherapy and then gave him his own stem cells back.. From what I understand, he would have recovered without the stem cells, but that the transplant makes recovery faster. He remained in the hospital for another 10 days after transplant and then we drove home in time for Christmas. My husband and another son had put up a real Christmas tree for him with lights just like we had when he was a little guy. We had a wonderful Christmas with lots of rest. I went back to work after the first of the year and he hopes to return to work the end of the month.
I wish you peace during this difficult journey my friend.
Miss Beth