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My Bone Marrow Transplant

Pain is inevitable, suffering is optional.

Monthly Archives: September 2013

I went in to hospital today for a heart check up as I have been having some chest pains. I came out radioactive and with Shingles!

They injected me with a radioactive isotope and then scanned my heart at rest, during stress and then after the stress. All in all the procedure takes 3.5 – 4 hours with lots of down time in between. They said “wear light casual clothing”. Silly me followed the instructions, forgetting how cold that hospital is! Linds had to bring me a blanket. It takes 6 hours for the isotope to clear your system. The instructions were “Stay away from pregnant women and children under 12. Drink lots of water and when you pee flush 3 times.”

Before going to the hospital I had sent Raymond some pictures of a rash on my back. I didn’t think much of it because one of the drugs I am on can cause rashes. I got an email back “that’s shingles. See a doctor immediately!” So we did as soon as the heart test was over and I am now on large doses of anti-virals every 8 hours. The rash has got worse and has spread to my chest – that explains the chest pains. And as usual there are side effects so I have to have a blood test after 3 days and I’m not allowed to go to work. Not that I feel like working with a nerve in my chest spasming every10 seconds, and a left arm which doesn’t want to lift above the horizontal.


Anniversary Check up

Today is our 22nd Wedding Anniversary, and i am in HK for a check up.

Having a check up is stressful. In the days leading up to it, the slightest thing, shortness of breath, random pains, fatigue, nausea get amplified into possible relapse symptoms. ┬áIt didn’t help that this time I had done too much walking around HK the 2 days before the checkup and was very tired.

I was quite grumpy as I left for the hospital because I had had to fast. The taxi ride there was a nightmare, a very old driver who I thought might pass out at any time. Luckily he seemed to think there was a 20 mph speed limit for the entire journey, and if a car came the other way we almost stopped.

Then there was a mix up in the blood test centre. The phlebotomist came up to me and said something like “Mr. Bau?” As my Cantonese name is roughly pronounced Bau Ton Yi, I said “yes”. She then, crucially, omitted to get me to verify my name on the blood forms which is SOP. Anyway, the French guy after me spotted the mistake and they changed all the labels on the blood vials!

So after all that I saw Raymond at about 10:10 when he had the preliminary results. All good. My lungs get better every check up, my blood is fine – yes, it was my blood. So he has stopped all of my current medication except Nexium. No more immune suppressants, antivirals and antibiotics. He says that I will feel a lot better once they are all gone. However, he has put me on a maintenance dose of hydrocortisone. Prolonged intake of prednisone can cause the body to stop making cortisol, so the hydrocortisone will ease the fatigue. I’m also on statins because my cholesterol is high. Oh well, everyone else seems to be taking it!

So I called Linds with the news and I was almost crying with relief. 20 months now, every check up makes me realise just how blessed I am. When you get good news after feeling so bad for a couple of weeks it is hard to hold it together. No matter how much you tell yourself that all is OK there is always that small voice at the back of your mind whispering “This time, maybe this time”. But there is still so much routine stuff to get through so you hold it together; payment, medication pickup, back to Steve and Paula’s place, packing, getting to the airport. There is no quiet alone time when you can let go. I know when I get home it’s going to be emotional.

And I have clearance to swim again. It’s been so long I can’t remember the last time.

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