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My Bone Marrow Transplant

Pain is inevitable, suffering is optional.

Category Archives: Hospitals

I forgot that I hadn’t posted this, it was in draft form until I remembered it today.

I had a normal check up last Tuesday in HK. My blood counts continue to surprise me by slowly and steadily getting better each check up. My RBC is at 3.16 and my Haemoglobin at 11.6. I haven’t seen an RBC above 3 since the transplant.

We have stopped Mycophenalate, one of the two immune suppressants that I have taken since the transplant, and will reduce the dosage of Ciclosporin from 50mg per day to 40mg per day in 2 months time. Every drug removed or dosage reduction is another small victory on the way to full recovery.

We are in the very north of the Philippines for Holy Week, staying at Sitio Remedios, a beautiful little resort of old Ilocano houses assembled on abeach by Dr. Cunanan. The last time I saw him was two years ago in the ICU in St. Luke’s Medical Centre, prior to my being airlifted to HK. It was great to meet him again in much better circumstances.

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 ┬ámonitor 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.

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.

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 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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I was a tad premature with my last post. The two days following have been very bad on the Upper GI GvHD front. Vomiting before taking pre-food drugs is a new one, and my weight has dropped to below 80Kg. It has not been this low for very many years.

So this morning I had an Endoscopy at St. Luke’s Medical Centre and it confirmed stage 1/2 GvHD. I sent the results and the pretty pictures of my small intestine off to the transplant doctors. Now they want me to have a blood test and a renal function test. What that has to do with my intestines I’m not sure.

Today I am in Hong Kong for my monthly check up. I’ve been having nausea and vomiting problems for some time now which seemed to have started with the switch from Noxafil to Sporanox. 2 or 3 times a week I have been throwing up before breakfast and at other meals I will just look at the food and say “sorry, I can’t eat this”. It happened at lunch today after my check up. We went to a Japanese Curry house in Windsor House. I sat down, looked at the menu and, just from the pictures, I knew we were in the wrong place. So we went to a Noodle shop and I had Ebi Tempura with Udon; Cap had cold Soba. Yesterday I wasn’t sure until I got to the airport in Manila whether I would be on the plane. I had been throwing up quite violently from about 7:30am to 8:30am and was feeling weak and queasy.

Anyway, back to the little matter of my check up. I am OK. I’m anaemic, but that’s normal. My Haemoglobin has gone down very slightly again, but my Creatinine is the best that it has been for 4 months which means that either my kidneys are functioning better or I gamed the test by drinking a lot of water before the blood test this morning! The Chest X-Ray shows no change.

My drugs have been adjusted again. The Cyclosporin has been reduced from 60mg a day to 50mg, the Acyclovir which has been at 800mg a day since the start is reduced to 500mg of another antiviral drug which is a derivative of it. But the big news, dear reader, is that the dreaded Sporanox has been stopped. Hooray! Sound the trumpets and ring the church bells throughout the land! Tonight I will ceremonially pour the remains of the bottle which I have with me down the drain. Hopefully in a few days my stomach will start to return to normal and I won’t be such a picky eater.

Raymond is pleased with my progress, and I am eternally grateful that I have such a great guy as my haematologist. Thank you James for finding him for me way back in June 2009. Next month it’s back to Singapore to see Dr. Goh.

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