Blog Update 9 March 2016

Blog Update 9 March 2016

Well another fun week or so has passed and as usual I try to not let a day go by without learning something. Whenever I get my bloods done and I do this every 3 weeks or so I make sure I get a copy. I have learnt to read the results but I still get surprises when things are pointed out to me that I wouldn’t even bother to take notice of.

I had one of my many clinic appointments this week at Cairns Hospital, this time for rheumatology. When you are on the very long list of drugs that I am on the list of side effects is also crazy long. Unfortunately some of the side effects that seriously affect daily life are Gout, Tenosynavitis and Rheumatism. Enormous pain throughout the body and the deterioration of the use of my hands and general mobility that unfortunately cannot get better only worse. It really has got to the stage where I just go in for a chat with him these days because we know there is little he can do and what he can do is restricted by the use of medication for my heart and lungs. His last letter to all the stakeholders in my medical care was hilarious.

While I was in hospital in November 2015 and I had a scheduled appointment with him during that time. It was the day that Jonah Lomu had died and I didn’t know until he told me at the end of the consultation. I had intended to interview Jonah for my book as there are only 2 sportspeople that I knew of that had had solid organ transplants and continued playing at the top level. The other was Alonzo Mourning the American basketball player. He wrote a letter to all the doctors that i see which was basically along the lines of  "I am not touching this guy until you heart and lung clowns get your shit together". It was hilarious and i could just picture him throwing his hands in the air and saying "i have never seen a patient like you Darren". "For gods sake look at your medication list its huge!". Ah you have to laugh otherwise you would go mad.

Well what did I learn today? I learned that I need to start reading my haemoglobin levels. As I have found down through the years it is often a doctor whose job it is not to chase up something who ends up pointing something important out and the transplant unit who have known my levels have been extremely high let me down. The rheumatology specialist described my blood readings as being like sludge! What scared me is that I am already on large amounts of various blood thinners so goodness knows what would have happened by now if I wasn’t. Strokes and heart attacks one would think would be a certainty and given the number of the latter I have had to endure I can do without any more before they inevitably end up happening. They will probably have to start taking a pint out every fortnight. Fun.

What’s disappointing is these levels have been like this for at least a year and the transplant unit have failed to even bring the subject up. The failures just keep piling up. Time for that enquiry I keep talking about. There is no excuse. I await a decision on the next course of action. Add it to the list of many.

On the bright side chapter 6 of my book is about 2 thirds written and I will post abridged version soon. Seeya soon

Cheers

D J