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My Bone Marrow Transplant

Pain is inevitable, suffering is optional.

Monthly Archives: October 2012

Today I turned 62. Without modern medicine and great doctors I would not have made it to 59.

We spent the morning in the hospital room of Alexa, a very brave 5 year old with AML, who was starting her third chemo session. Because of her cytogenetics she should have a BMT, but her 2 year old sister is not a match and no other donor has yet been found. We gave her parents some medical contacts in HK and Singapore and explained what we know about the costs of BMT there. In HK and most other places, to get typed as a donor is free. In the Philippines it costs PHP35K+ and that’s from a Government institution, so understandably there isn’t a serious donor registry.

Her doctors had apparently done a donor search in Taiwan, but from what we were told about cross-race matches, as she isn’t Chinese that was pretty much a waste of time. We advised searching in the US and Canada where there are large Filipino communities. We also advised them to make sure that she is transplanted in a centre which does a lot of transplants of that type. As far as I remember there is a specialist children’s unit in Queen Mary in HK.

It was probably too much information overload but we’ve told them they can contact us any time if they think we can help.

I’m back in Singapore for my 10 month check up. All appears to be well. My WBC is slightly high which they say is the steroids, Platelets are fine, RBC has improved slightly and Haemoglobin is up from 10.4 to 11.1 which is nice to see. The reception at SGH was amazing, people remembered me even though I  had not been there for 4 months.  I was commended for wearing a UV protective shirt and hat by one of the doctors. Dr. Goh doesn’t want to see me again until February after Chinese New Year so November and December I will be back to HK. Hopefully I can skip January.

Phil and Shirley have been wonderful hosts in their lovely apartment in Sentosa Cove. For those who know Discovery Bay in Hong Kong, this is much nicer.

I’ve caught up with lots of close friends and eaten way too much good food. Tomorrow I finish the shopping and go home on the 5pm flight.

I weighed myself first thing this morning; 78kg. That’s a 4kg drop in the past month. It’s all down to the fluid retention having ceased. My feet and lower legs are back to normal and the rest of my body isn’t as puffy as it used to be. As I’m eating well I am not concerned about what appears to be a drastic loss. I was 92kg before I got sick, so dropping all that weight is good for me. But I don’t recommend this route as part of your weight loss program.

I have no idea what caused this, possibly the cyclosporin dose reduction to 50mg per day a month ago? Let’s see what the check up next week brings.

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Today I went back to the Polo Club driving range for the first time since early March 2011. I just hit one bucket of balls very gently using the irons and the Pitching Wedge. Just to see what it was going to be like, whether I still liked it, whether I could hit it still.

My former instructor, Gary, was there and his face when he saw me was a picture of shock and delight. We had a long chat and agreed to resume lessons in late November when I had done a bit more exercise and remedial work.

I hit some good shots and some terrible shots as you would expect. I wasn’t trying to hit hard, more of a 3/4 swing. I stopped a couple of times to rest but over all I was encouraged.

Monday was the 10 month transplant anniversary. We were out of town visiting Bataan, where the Americans and Filipinos defended against the Japanese in WW11. It’s good to show Sam his Filipino heritage and how bravely they fought against overwhelming odds. Sadly we were also on the route of the infamous Death March where many hundreds died after the surrender!

I’m feeling really good, the GvHD is well under control with the steroids. I’m writing to the doctors today to see if I can reduce the steroid by another 5mg per day.

I have been given permission to reduce my daily steroid intake from 40mg to 35mg starting immediately. In a few days I can go down to 30mg after checking with the doctor again. Prednisolone is a wonderful drug for controlling GvHD, but the long term side effects make me want to use as little as possible.

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I am back on the steroid Prednisolone to control the gut GvHD, and it is doing a great job. I feel so much better without the constant gut discomfort. My appetite is much, much better and I am gaining weight again. However, I am not sleeping as well.

Unfortunately I was also instructed to go back on the dreaded Itraconazole! I have discovered that the liquid form is not available anywhere in Manila, so I have had to switch to the tablets which don’t absorb as well. I’ll pick up a large supply of the liquid form at my next check up in Singapore in 2 weeks time.

You can buy both medicines over the counter in Mercury Drug here. The Prednisolone is cheap, the Itraconazole is not!

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