This week saw a visit to Prince Charles Hospital on Monday for blood tests to check on reaction to the new trial drug, everolimus. The result was that I had to reduce the dosage to 1 mg morning and night having started at 1.5 mg. On the way home I visited Tim Davis at Marsh Tincknell (former business colleagues) and what I thought would be a ten minute visit turned into an hour. It was great to catch up. We're looking at the possibility of doing some work together (part time of course).
Also popped in to see Terry Howard at Instant Tax Refunds in Beenleigh. He didn't have too much time as this is the busiest time of the year. Anyway, it was good to get out and talk to people again. The weather was wonderful and I drove home with the roof down, feeling great.
Thursday had my usual weekly check-up at Prince Charles and all results were good. Reducing my Cyclosporin (anti-rejection drug) from 250 mg twice daily to 225 mg. Back again this Thursday and then hopefully down to fortnightly visits. What I do enjoy on these visits is meeting other transplant recipients and comparing notes. Gets a bit like the "old wives club"
Janyne and I continue to ponder the future and have been looking at Caravans thinking travel might be a good idea. We saw some great 'vans but I think we've both come to the conclusion that it was great 20 plus years ago but maybe not for us now. By the time we purchase a van and towing vehicle we're up for $100,000 plus. OK, we'd sell the Porsche to pay for it but with depreciation, fuel costs etc, we'd do just as well staying in motels. I guess we're not in love with the caravanning life enough to make such a big change to our lives. Still thinking of selling the Porsche though, so anyone wanting (or who knows someone who might be) a 2004 Boxter S tiptonic in mint condition, give me a call.
Haven't had too many visitors lately as many friends as well as Paul and Jacqui have colds, something I must avoid. However we continue to communicate by phone and email.
It was good to hear from Donna Burnett (Great Southern Plantations Limited) this week as well as Phil Griffiths, a fellow transplantee who hasn't been too well lately. He had the cheek to suggest we get one of those mechanical dogs so that we wouldn't be tied down. Not quite the same Phil!!!!
Always look forward to any comments or response.
Until next week, take care.
Ben
Sunday, July 16, 2006
Sunday, July 09, 2006
Better late than never
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
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
Saturday, July 01, 2006
8 weeks on
It's now eight weeks since transplant and I'm feeling great. Thursday's hospital visit involved two blood tests, a lung function test and x-ray all showing positive results. Miraculously, we were out of there at around 11.00 am (normally mid-afternoon) with my next visit being 10th July so next week is a free week. Popped in to see my long term lung Physician, Dr Glenn Rice-McDonald on Wednesday. His face just beamed when he saw me. It must be rewarding to see a patient you have cared for for four years doing so well after transplant. Also visited my GP of 18 years, Dr John Golder, and he had the same reaction. Couldn't believe how well I looked. Even his staff commented.
Finishing early on Thursday gave us the opportunity to have lunch with our daughter, Jacqui, and we visited her at work in the city. She works for Great Southern Securities, the company to which I was contracted for about 12 years. Those of my ex-colleagues who were there and who last saw my when I was ill and 105 kilos, were amazed at how much weight I had lost (76 kilos at last count) and how well I looked. Most had only seen me after I contracted the lung problem. In fact everywhere I go people are surprised at how well I look and how much happier and more positive I am.
I feel truly blessed and everyday, privately, I thank the organ donor and his/her family for the gift of life I have. I had forgotten just how well I could feel having been ill for so long and it really is an awesome feeling. Not sure I believe in miracles but when one considers that someone else's lungs are living and breathing inside of me, and one looks at the people, the science, skills and technology that makes such a thing possible, it really is miraculous.
Still want to hear from the GICU people especially the two Cathies and Ross. Hope my "comments" option is working.
Be in touch next week.
Cheers,
Ben
Finishing early on Thursday gave us the opportunity to have lunch with our daughter, Jacqui, and we visited her at work in the city. She works for Great Southern Securities, the company to which I was contracted for about 12 years. Those of my ex-colleagues who were there and who last saw my when I was ill and 105 kilos, were amazed at how much weight I had lost (76 kilos at last count) and how well I looked. Most had only seen me after I contracted the lung problem. In fact everywhere I go people are surprised at how well I look and how much happier and more positive I am.
I feel truly blessed and everyday, privately, I thank the organ donor and his/her family for the gift of life I have. I had forgotten just how well I could feel having been ill for so long and it really is an awesome feeling. Not sure I believe in miracles but when one considers that someone else's lungs are living and breathing inside of me, and one looks at the people, the science, skills and technology that makes such a thing possible, it really is miraculous.
Still want to hear from the GICU people especially the two Cathies and Ross. Hope my "comments" option is working.
Be in touch next week.
Cheers,
Ben
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