Hi, sorry for the confusion. 2 delays. The first was me putting off the transplant as long as I could in case my body all of a sudden decided to let the ATG work. Although I said I delayed it 3 months. Truly I delayed it for 6 months from when it was recommended & I authorized the search. I was fortunate the search team at my clinic found me a number of 10/10 matches, one in particular hit all the right marks for me: his young age (20), 10/10, same blood type, and also CMV negative like I was. For an unrelated donor this was considered a perfect match.
There is always a risk of delaying transplant because of susceptibility to infection. I had 3 small skin infections over the summer in the same area, which impacted my counts. These were isolated and never showed up in my blood cultures but started 3 months after the ATG. Following the 1st, my Dr suggested we may need to start a donor search so set things in motion to allow this search to happen quickly should we need to. The 2nd infection followed the 1st by 4 weeks and my Dr. told me it was time to start the search. If I had had no infections following the ATG she would have waited longer to confirm if the ATG had worked, and if not maybe done a 2nd ATG. However the infections basically proved my marrow wasn't strong enough to withstand them. White cell & neutrophils would fall very low, instead of rising to fight the infection as they were supposed to. The antibiotics impacted my counts and the GCSF shots stopped producing much while I was on antibiotics...
I authorized the search but was still hopeful that once off the antibiotics my blood counts would again rise. They started to once again end August but then a 3rd infection hit end Sept requiring an extra week on antibiotics which finally cleared the pesky skin infection. However it took a full month before my counts recovered to their pre ATG Severe AA levels. if I had any additional infections I'd risk becoming resistant to the antibiotics.
It was after this 3rd infection it became clear to me I needed the transplant, much to the relief of my Dr.
My 2nd delay was because once I authorized the transplant, they could have done it in early November. However, I really wanted to wait until end December to allow our 2 children who are college to finish their final exams without the distraction of my having the transplant. Fortunately I was able to stay healthy prior to transplant so the wait was OK, but it was risky. My team scheduled the transplant to occur January 7, but due delays in insurance company approvals due to the holidays, it was delayed until Jan 28. I had gone off the cyclosporine early December, anticipating the January 7 date, now I would have to be off it longer. It made me very nervous because I thought my counts might drop once I was off the cyclosporine, but they rose instead.
So it became a head game. I was nearing the end of the 6 month hold for my perfect donor. My team had already changed the date once due to insurance delays and my donor’s agency doesn’t take kindly to continual date changes. Was it worth postponing the transplant again, and risk the up and down counts I had for over 1-1/2 years. With my history the past 23 years of lowish counts not needing treatment, and the past 1-1/2 years when we had several glimmers of hope when it looked like things started improving, but then again crashed, the reality was this would likely have happened again for me so I decided to continue to transplant. I was ready!
Also an added bonus with the donor transplant is several leading Aplastic Anemia experts and Amyloidosis experts are certain that with the new immune system I now have, this will also likely cure the Amyloidosis which was my initial diagnosis. To date Amyloidosis has not been curable. So this was another reason to continue with the transplant. Only time will tell us for sure though.
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Originally Posted by LoveRapheal1
Yes but I am a bit confused. You mentioned that you stopped the cyclosporine and your counts increased as a result. You also mentioned that you have decided to postpone the transplant 3 months.
Is this because your counts have increased and you want to see if they stabilize within the next few months? I would like to hear what has happened as a result of this decision. Another member on the forum mentioned that she threw her cyclosporine pills away and her counts increased. I would not risk that but maybe this can happen or just happen temporarily depending on the individual.
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