Monthly Archives: November 2012
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.
Yesterday I went to see Dr. Ruth D at SLMC because she is a pulmonary specialist and I have a head and chest cold and cough. I haven’t seen her since I was in the ICU in SLMC last March. She was the doctor who kept me alive long enough for me to be airlifted to Hong Kong. She helped save my life. She’s a wonderful, cheery, chatty person who is a delight to be with.
The first words out of her mouth after the usual pleasantries were “what prednisolone dose are you on?” That threw me; I’m used to haematologists asking such things but from a pulmonary doctor it was something new. She took careful notes of my current drug regime, and from the questions it was obvious that she knew a lot about GvHD. She asked me where my GvHD presents and I told her the gut, mouth and infrequently the skin. She said she had a patient who had a transplant 8 years ago and the GvHD is only on her tongue. We had a discussion about bronchiolitis obliterans, the most dreaded GvHD, and also scleroderma. She listened to my chest, prescribed a whole lot of medication including a new antibiotic, nagged me to exercise more and sent me on my way.
I went to an ENT Specialist yesterday. My right ear has been bothering me for a few weeks, just feeling like it is blocked most of the time. He shoved a camera in my left ear to show me what a good ear looks like, surprisingly hairy in there but no wax. Then he went into the right ear and it was very gungy. What followed was not nice; he tried to suction out the wax that was stuck to my eardrum which was intensely painful! He got some out but the pain was so great he abandoned the suction and used a pair of fine tweezers to extract a lot more; less pain but still some. There is still some stuck to my eardrum so he gave me a prescription for Cleanear which I have to use 3 times a day to dissolve the remaining wax.
Also yesterday I received permission to reduce the Prednisolone dose to 15mg per day. So far so good.
I’ve got Sam’s cough with a bit of phlegm, Chinese cough medicine keeps it under control.
My weight has increased a bit since I went back on the steroids, today I am 79.6kg, still over 10kg down on my pre-illness weight. But that’s a good thing for other health reasons.
No issues after reducing the steroid dose to 20mg per day. I am coughing but Sam has been sick with a cough as well so no surprises there. No more noticeable edema, sometimes I think my feet are slightly swollen but regular shoes still fit.
I have a tropical fish tank which I find very therapeutic. As I’ve never kept fish before I have started a separate blog cichlidsandme.wordpress.com to chronicle my journey. Why fish? It wasn’t through choice as you will read, but now that I have them I am determined to keep them healthy and alive.