I'm a bit tardy this week. For some reason I keep feeling it's a day earlier than it really is. Thought we had this week away from the hospital but it was not to be. Some time ago I had agreed to participate in a trial program for a new drug which, it is hoped, will help in the preventon of a condition commonly known as Bronchiolitis Obliterative Syndrome (BOS). This is a type of scarring or fibrosis which affects the very small airways of the transplanted organ in Heart-Lung, Bilateral (Double) Lung and Single Lung Transplant recipients.
BOS remains the largest single cause of death following a lung transplant operation. At present there are no known or effective therapies for the prevention of this condition. Anyway, in order to be randomly selected, I had to go in on Thursday for the usual tests. To cut a long story short, I was selected and am now on the new drug with possible side effects being monitored over the next few weeks. This is the wonderful thing about being given a second chance at life; Medical Science is always finding new drugs or treatments and who knows where that will lead. I could end up living to a ripe old age.
We took the opportunity to visit the Intensive Care Unit where I spent my first 19 days post op. It was like visiting an old home and I felt quite emotional there. Looking at some of the current patients brought back some vivid memories of my own situation just a few weeks ago. Met some of the staff who looked after me, Cathy and Ross being among them. Left them with about two kilograms of chocolates to share as a "thank you". How else can you thank people who've played a big part in saving your life and making you well ?????
Janyne and I are starting to think about what we'll do in the future. As the hospital visits extend to fortnightly and then monthly, we'll have time for travel. It is hard to re-adjust thinking to long term when pre-op, we were planning on my demise within the current calendar year. Life can change so rapidly and so dramatically.
We're still pondering the pros and cons of getting a new dog. We both miss Selby and, whilst he can't be replaced, we do miss the enthusiastic greetings and the wagging tails when we come home after being out. We often think of his personality and talk about the funny things he used to get up to. On the other hand there is the long term responsibility and the "being tied down" that goes with pet ownership. We'll sleep on it a bit longer. Until next week.
Bye
Ben
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2 comments:
Hi Ben
I have been keeping up to date with your progress through this site and am still amazed at the whole process. Keep doing what you are doing Ben and I wish you and your family all the best.
Say Hi to Jacqui and keep well.
Donna Burnett
(GSPL)
Sorry to miss our luncheon the other day but as it turned out I wasn't that well and I didn't really want to compromise your progress. I only had what felt like a mild chest cold but my breathers were down a little. Come Wednesday I was back at PCH for a checkup and bronc with the preliminary showing a minor rejection episode so I was in unitl today having some methylprednisolone pulses. All up around 2500mg over three days. Full results from bronc cultures are not yet known. Also further changes to medication. So I am a little high at the moment. Feel reasonably well. Going back to PCH next Thursday might see you there. All the best to you and Janyne. With regards to the dog perhaps you might like to consider getting one of those electronic dogs I have seen advertised in the Toy Catalogues. Then you could turn him/her on when you get home get a warm and fussy feeling and turn him off on your way out. Just a thought! Just imagine no vet bills, no toilet training, no feed bills, and you can take him/her wherever you like.
Regards
Phil
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