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My Bone Marrow Transplant

Pain is inevitable, suffering is optional.

There is a big discussion going on on the GvHD forum on http://www.acor.org about the lack of knowledge about GvHD. It seems to be almost universal that transplant doctors don’t tell patients about the potential long term complications. There is very little research into the subject because the population who suffer from it is tiny, it just isn’t worth the drug companies time to look into it properly.

I was told almost nothing prior to my transplant about the potential complications. I knew that there was a very high chance that I would get it, I knew that it would probably be the skin and gut. I have it in my gut, eyes and mouth. Getting some GvHD is a good thing because it means the new immune system is active and attacking my cells so it will also kill any remaining leukaemia cells, but if it isn’t managed properly it can cause serious illness and even death. Just this week a 9 year old girl here in Manila, who had a BMT in January 2011, died of bronchiolitis obliterans which is where the GvHD gets into the lungs and drastically reduces lung function. This is the worst possible GvHD to get, if you do survive you are likely to have a lung function of less than 50%.

There are no accurate statistics of death from GvHD, the deaths are usually classified as something else like the above mentioned lung problem. Most present as auto-immune diseases because that is actually what they are, but the patient wouldn’t get the auto-immune disease without the GvHD so that is the real reason and it should be recorded as such.

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