Skip to content

My Bone Marrow Transplant

Pain is inevitable, suffering is optional.

Category Archives: GvHD

Life has been pretty stable during the first month of 2013. On January 2nd I started a 6 month contract with an LA based BPO with office in Manila and Chennai. I did a long haul flight to LA and got sick; actually I got worse, I already had a cold when I left. It meant I lost a days work as I was tucked up in my hotel bed. I managed to fly back and spent the weekend in bed with very bad sinus pains, so I went to St. Luke’s on the Monday and had a thorough check up, blood test, the works. All was fine so no long term issues.

My steroid dose has been at 2.5mg daily for a week now and I feel OK. My weight is stable at 82kg. I’ll ask Raymond next weekend if I can stop the steroid entirely. Last time I stopped it I had a massive GvHD flare up in my gut, I hope that it is not going to happen this time. The other good thing is that when I stop the steroid I can also stop the anti-fungal.

Anyway, to the title of this entry: my feet are swollen again. It’s been weeks since they were this size. Yesterday they were fine, today noticeably swollen. I need to  monitor what I eat and drink to see if it is diet related. I don’t think it is as I haven’t eaten anything out of the ordinary, even at the BSM International Dinner last night. The skin on my feet and ankles feels a bit tight as well.

There was a beautiful double rainbow over Manila Golf Club this morning. I was already feeling happy but that boosted it.

I’m off to Singapore next week for a thorough check up and pick up some more medication. My supplies are almost exhausted, except of the steroid, but I should be OK until Wednesday next week.

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.

Armstrong Economics

Forecasting the World

The WordPress.com Blog

Pain is inevitable, suffering is optional.

Waddling Tales

Tales of a slow runner with cancer

MDS journey

MDS Journey to health

Tallbloke's Talkshop

Cutting edge science you can dice with

To do: 52

Venturing out of the comfort zone

Madsen Pirie

Just another WordPress.com weblog

Climate Audit

by Steve McIntyre

Bishop Hill

Pain is inevitable, suffering is optional.

Watts Up With That?

The world's most viewed site on global warming and climate change

Guido Fawkes

Parliamentary plots and conspiracy