I am very interested in the future development of heart transplant technology for a very selfish reason. If and when I get a new heart, chances are it will not continue pumping for a terribly long time. Undertaking a heart transplant saves the recipient's life, but brings into play a myriad of risks and potential complications.
First and foremost, there is a real risk that the body will reject the new organ. It is, after all, a foreign object and the immune system is designed to seek and destroy all foreign objects within the boundaries of its kingdom.
This means that, post transplant, I will need to take powerful drugs every day of my life to suppress my immune system. These drugs will, hopefully, politely but firmly tell my little army of immuno-warriors that the new heart is Switzerland and a no go zone. Hopefully they will listen. However, we aren't clever enough yet to quarantine a particular organ and allow the immuno-warriors to maintain their watch across the rest of the kingdom. The whole army is scaled back everywhere, forever. This means that I will be hypersensitive to all infections, pathogens and any other nasty organisms I may have the misfortune to meet after the transplant.
Then, even if I manage to defeat the combined forces of Rejection and Infection, the new heart will not necessarily endure for the term of my natural life. It will wear out more quickly than its pals like my liver, spleen and kidneys, just because it isn't mine.
Rejection, Infection and Organ Expiry are the three horsemen of the apocalypse that bring down many of those who are lucky enough to get an organ transplant. So far as heart transplantees are concerned, roughly 75% live for a further five years post transplant and around 56% get to ten.
Anyway, I have booked a ticket on the ten year plus train so no need to worry. I am young(ish) and fit (well, fit in a pudgy lawyer sense) and should fall into the good end of the bell curve. Fiona Coote is still going strong after twenty five years. No reason I can't either.
The stats don't make me feel melancholic or morbid. In fact, I look forward to the future with great optimism. This is because heart transplant technology is developing rapidly. I have seen the future. Its developers are not confined to the States or Europe, where many research centres are doing fine work. A little group of doctors and engineers here in Brisbane, in my own hospital in fact, are developing what is presently the world's best artificial heart. This is what my doctors do in their spare time!
The artificial heart being developed by these clever chaps is different to the artificial hearts that have been designed, and used, thus far. The idea of an artificial heart is not new and for many years last resort patients have been fitted with them, with limited success.
The Brissy boys have developed an artificial heart that replicates the function of the human heart, but not the method. It doesn't look like a heart and it doesn't pulsate intermittently. It is a little cylinder that receives blood into the top, spins it round in an internal spinning wheel, shoots it out to the lungs to be oxygenated and then pumps it through to the aorta. It is powered by electromagnetic forces and is charged from an external power source without the need for wires or tubes going through the skin. A bit like bluetooth. The flow is continuous so the patient will have no pulse. Spooky.
If the project works, there will be no waiting lists, no transplants of live organs, no rejection, no added risk of infection and no organ wear. The transplant team will just take a heart of the right size off the shelf and bang it in.
The cardiologist leading the research is a bloke called John Fraser. He is an enthusiastic and charismatic Scotsman who has done a bit of acting. He once shared a flat with David Tennant, who recently played Doctor Who. My wife and daughter like Mr Tennant very much, so Dr Fraser is a popular man in our household. He has told Imogen that homework was a waste of time. She continues to do her homework, but with great reluctance. She said, "Dad, he knows David Tennant and is making you a new heart. Do you want to argue with him?"
Feel free to donate bucketloads of cash to the Prince Charles Hospital Foundation to support this research. Have a look at the website, Bivacor.com, where the lads explain their work a little better than I have attempted to do. The artificial heart has just been implanted into some noble sheep and should be ready for putting into patients in around five or so years. It may well be up and running at the time I'll be up for a new engine myself.
Until next time,
Saturday 31 March 2012
Friday 30 March 2012
Imogen
As mentioned previously, my daughter Imogen is twelve and she has just started high school at a posh place called Stuartholme.
Immy has been asked to deal with a lot; more than is fair for any twelve year old.
Last September, Immy's mum told her that her dad was going to die. At the time, he was. It was almost certain.
Early last year, Immy experienced the pleasure of seeing her home sitting in a lake of stinky floodwater seven feet deep. She was asked to move in with my sister for a few days and then into temporary accommodation for six months whilst our house was repaired. She never complained. She made friends with a few of the other flood refugee kids, once of whom is now her BFF. I think that means Best Friend Forever. I'm learning to speak teenager.
Immy has a brother with autism. She loves him dearly and he thinks she is wonderful. She has taught him to play basic games with her, a process that required an adult dose of patience, understanding and empathy. She understands when he is in a position of risk and how to deal with it. She defends him fiercely whenever she thinks someone is acting contrary to his interests.
Immy is a bright girl. She speaks and writes articulately, with wit and perception. She has joined the school debating team and is relishing the role of third speaker. This requires her to think on her feet and change her game plan as and when circumstances demand. She is good at that.
Immy has always been a seriously talented artist. From the age of two she was sketching recognisable objects. By about seven she was painting like an adult. I have lots of Immy's artwork on the wall of my hospital room and it cheers me immensely.
After she started High School, I asked Immy her favourite subject and she replied, "Class clownism". She got that from The Simpsons, which is her social reference point for everything. When told that I was getting a heart transplant she observed that I was just like Moe, who apparently has a cow's heart. I am hoping that my doctors will not be compelled to attempt xenotransplantation but if so, Immy and Moe will be able to guide them through it.
I believe that Immy would make a good lawyer but she considers the idea anathema. Smart Girl.
Until next time,
Immy has been asked to deal with a lot; more than is fair for any twelve year old.
Last September, Immy's mum told her that her dad was going to die. At the time, he was. It was almost certain.
Early last year, Immy experienced the pleasure of seeing her home sitting in a lake of stinky floodwater seven feet deep. She was asked to move in with my sister for a few days and then into temporary accommodation for six months whilst our house was repaired. She never complained. She made friends with a few of the other flood refugee kids, once of whom is now her BFF. I think that means Best Friend Forever. I'm learning to speak teenager.
Immy has a brother with autism. She loves him dearly and he thinks she is wonderful. She has taught him to play basic games with her, a process that required an adult dose of patience, understanding and empathy. She understands when he is in a position of risk and how to deal with it. She defends him fiercely whenever she thinks someone is acting contrary to his interests.
Immy is a bright girl. She speaks and writes articulately, with wit and perception. She has joined the school debating team and is relishing the role of third speaker. This requires her to think on her feet and change her game plan as and when circumstances demand. She is good at that.
Immy has always been a seriously talented artist. From the age of two she was sketching recognisable objects. By about seven she was painting like an adult. I have lots of Immy's artwork on the wall of my hospital room and it cheers me immensely.
After she started High School, I asked Immy her favourite subject and she replied, "Class clownism". She got that from The Simpsons, which is her social reference point for everything. When told that I was getting a heart transplant she observed that I was just like Moe, who apparently has a cow's heart. I am hoping that my doctors will not be compelled to attempt xenotransplantation but if so, Immy and Moe will be able to guide them through it.
I believe that Immy would make a good lawyer but she considers the idea anathema. Smart Girl.
Until next time,
Thursday 29 March 2012
It takes a lot to laugh, it takes a sternum to cry
I've had a spot of trouble with my sternum wound. Big trouble.
Some basic info first. The sternum is the breastbone running down the chest, with ribs attached to it.
When I first had surgery to attach the Impaler, back in September, my cardiac surgeon cut the flesh and sawed through the sternum to give him a big access hole for open heart surgery. I was of course blissfully asleep.
My cardiac surgeon is a bloke called Bruce Thomson. He should be a national treasure. He is skilled, humble, approachable, compassionate and cool as a cucumber. He has saved my life a few times. It's what he does every day. Dr Thomson is one of a select club of cool guys called Bruce. Like Springsteen, Willis, Lee and my Managing Partner, Bruce Humphrys. I trust Bruce, the doctor and my partner, implicitly and have every confidence in their skill and judgement. Bruce (the doctor I hope) is likely to do my transplant, so I sleep pretty well. These medicos are the real professionals; not bozo commercial lawyers who get paid to bring about what are essentially transfers of money. We don't save lives or, at the other end of the spectrum, tell families we've done everything we could.
The other cardiac surgeon is a bloke called Peter Tesar. He taught Dr Thomson the trade so I'd be more than happy for him to do the surgery if need be. He's a great guy as well. No god complexes in this place.
Anyway, about seven weeks ago my sternum wound began to break down. It had healed up almost completely, but then decided to start anti-healing.
I must point out that my sternum had actually been sawed through twice again after the initial surgery. The second times was so that Dr Thomson could urgently remove a clot that had formed near my heart, which had caused what I understand was a stroke. The third time was my fault. At some point during my two month coma, whilst still asleep, I decided to get out of bed and run to freedom, leaving the Impaler behind. And the dozen other machines to which I was attached! I fell face down and mangled my healing sternum. Dr Thomson went in again and fixed it.
Despite three major surgeries, the sternum wound healed pretty well from October to February. Then, around my fortieth birthday, it started anti-healing. It turned into a wide deep chasm, a bit like the grand canyon on a 3D topographical map, oozing blood.
My doctors were baffled. They suggested a few plausible explanations, which we tested. I was sent to the Royal Brisbane Hospital for a punch biopsy and an incision biopsy. At one stage I had six dermatologists clustered around me peering into the crater. They ruled out pyoderma gangrenoma, a nasty autoimmune disease, which was good. They ruled out an allergic reaction to the titanium stitches and plate under my sternum, which was also good. They failed to culture any nasty pathogens, which was really good.
My doctors then decided to call in a plastic surgeon. She too was baffled. However, she knew how to fix it. She decided I needed pectoral flap surgery. This is a procedure whereby the pectoral muscles are unattached and then crisscrossed and reattached in new locations. I told her I wanted a manly, Chesty Bonds chest. Chesty Bonds is a cartoon man who advertises Australian singlets. He looks a little like Butch Peacock, one of my partners who has now retired. Google him if you need to. Chesty, not Butch.
I was pretty upset about further surgery before the transplant, but took it like a man (as Chesty would). I then had a chat to one of my physios about what the post surgery would involve. She is not my regular physio but had been rostered on to see me. She told me what would happen. She gave me a hospital pamphlet about it, bearing the Hospital's livery. The trade practices lawyers will understand that one.
Well, in short she told me a horror story, fully corroborated by the horror pamphlet. I would be put into a straightjacket like vest with my arms pinned at the sides for six weeks. I would need a nurse to get me out of bed, feed me, toilet and brush my teeth. For six weeks! Perhaps I would be able to flap my hands like a penguin.
This made my highly agitated and I became evil to be around. I yelled, I ranted. Todd, the psych nurse came to see me and I cried first the first time in my adult life. Like a baby. I told him that I couldn't do it. I had done everything asked of me for seven months without complaint and now this. Todd tried hard and told me that I was the most resilient person he had met and if anyone could do it I could. He told me to talk to Dr Thomson about the possibility of alternatives.
I had already built up my body from my post coma state (being as weak as a kitten) to a colossus of strength ready for transplant surgery. I would now need to a full rehab again, after somehow enduring the straightjacket, delaying the transplant for many months.
Later that day I spoke to Dr Thomson. He was, as usual, calm and measured. He told me that I had been misinformed. I gave him the horror pamphlet. He read it, twice, and said that it was wrong. This would be the rehab for a frail person who would need the sternum removed, or whose sternum was weak and brittle. There were degrees of pec surgery and degrees of recovery. My experience would be less dramatic than the straightjacket. A few days of some arm immobilisation, but by no means total. A few days off the transplant list, if any. No serious wasting of the colossus. I was relieved and bought him a new car. He likes it very much.
I don't think I have ever been as happy as I was at that moment. More surgery is a hassle but this I can do!
That night I decided to write this blog. I also decided that I would collate the posts and responses and try to get the thing published as a book, to raise some funds for the transplant research they do at this hospital, and the amazing work they do at Charlie's autism centre.
So be warned. Your responses may make it to print.
Yesterday I went back to the Royal. The good news continues. The sternum wound is now healing fast. It has now had a special vacuum dressing applied, at the request of the plastic surgeon, and it is doing well. Pecs surgery is still likely but there is a slim fighting chance we can avoid it altogether.
I haven't got my hopes up and am prepared for pecs surgery next week. Realistically, it will still happen. That's a call for the surgeons and if they say so, it will be once more into the fray.
I am no longer evil to be around. Still a long and tricky road ahead, but by God it will remain interesting.
Until next time,
Some basic info first. The sternum is the breastbone running down the chest, with ribs attached to it.
When I first had surgery to attach the Impaler, back in September, my cardiac surgeon cut the flesh and sawed through the sternum to give him a big access hole for open heart surgery. I was of course blissfully asleep.
My cardiac surgeon is a bloke called Bruce Thomson. He should be a national treasure. He is skilled, humble, approachable, compassionate and cool as a cucumber. He has saved my life a few times. It's what he does every day. Dr Thomson is one of a select club of cool guys called Bruce. Like Springsteen, Willis, Lee and my Managing Partner, Bruce Humphrys. I trust Bruce, the doctor and my partner, implicitly and have every confidence in their skill and judgement. Bruce (the doctor I hope) is likely to do my transplant, so I sleep pretty well. These medicos are the real professionals; not bozo commercial lawyers who get paid to bring about what are essentially transfers of money. We don't save lives or, at the other end of the spectrum, tell families we've done everything we could.
The other cardiac surgeon is a bloke called Peter Tesar. He taught Dr Thomson the trade so I'd be more than happy for him to do the surgery if need be. He's a great guy as well. No god complexes in this place.
Anyway, about seven weeks ago my sternum wound began to break down. It had healed up almost completely, but then decided to start anti-healing.
I must point out that my sternum had actually been sawed through twice again after the initial surgery. The second times was so that Dr Thomson could urgently remove a clot that had formed near my heart, which had caused what I understand was a stroke. The third time was my fault. At some point during my two month coma, whilst still asleep, I decided to get out of bed and run to freedom, leaving the Impaler behind. And the dozen other machines to which I was attached! I fell face down and mangled my healing sternum. Dr Thomson went in again and fixed it.
Despite three major surgeries, the sternum wound healed pretty well from October to February. Then, around my fortieth birthday, it started anti-healing. It turned into a wide deep chasm, a bit like the grand canyon on a 3D topographical map, oozing blood.
My doctors were baffled. They suggested a few plausible explanations, which we tested. I was sent to the Royal Brisbane Hospital for a punch biopsy and an incision biopsy. At one stage I had six dermatologists clustered around me peering into the crater. They ruled out pyoderma gangrenoma, a nasty autoimmune disease, which was good. They ruled out an allergic reaction to the titanium stitches and plate under my sternum, which was also good. They failed to culture any nasty pathogens, which was really good.
My doctors then decided to call in a plastic surgeon. She too was baffled. However, she knew how to fix it. She decided I needed pectoral flap surgery. This is a procedure whereby the pectoral muscles are unattached and then crisscrossed and reattached in new locations. I told her I wanted a manly, Chesty Bonds chest. Chesty Bonds is a cartoon man who advertises Australian singlets. He looks a little like Butch Peacock, one of my partners who has now retired. Google him if you need to. Chesty, not Butch.
I was pretty upset about further surgery before the transplant, but took it like a man (as Chesty would). I then had a chat to one of my physios about what the post surgery would involve. She is not my regular physio but had been rostered on to see me. She told me what would happen. She gave me a hospital pamphlet about it, bearing the Hospital's livery. The trade practices lawyers will understand that one.
Well, in short she told me a horror story, fully corroborated by the horror pamphlet. I would be put into a straightjacket like vest with my arms pinned at the sides for six weeks. I would need a nurse to get me out of bed, feed me, toilet and brush my teeth. For six weeks! Perhaps I would be able to flap my hands like a penguin.
This made my highly agitated and I became evil to be around. I yelled, I ranted. Todd, the psych nurse came to see me and I cried first the first time in my adult life. Like a baby. I told him that I couldn't do it. I had done everything asked of me for seven months without complaint and now this. Todd tried hard and told me that I was the most resilient person he had met and if anyone could do it I could. He told me to talk to Dr Thomson about the possibility of alternatives.
I had already built up my body from my post coma state (being as weak as a kitten) to a colossus of strength ready for transplant surgery. I would now need to a full rehab again, after somehow enduring the straightjacket, delaying the transplant for many months.
Later that day I spoke to Dr Thomson. He was, as usual, calm and measured. He told me that I had been misinformed. I gave him the horror pamphlet. He read it, twice, and said that it was wrong. This would be the rehab for a frail person who would need the sternum removed, or whose sternum was weak and brittle. There were degrees of pec surgery and degrees of recovery. My experience would be less dramatic than the straightjacket. A few days of some arm immobilisation, but by no means total. A few days off the transplant list, if any. No serious wasting of the colossus. I was relieved and bought him a new car. He likes it very much.
I don't think I have ever been as happy as I was at that moment. More surgery is a hassle but this I can do!
That night I decided to write this blog. I also decided that I would collate the posts and responses and try to get the thing published as a book, to raise some funds for the transplant research they do at this hospital, and the amazing work they do at Charlie's autism centre.
So be warned. Your responses may make it to print.
Yesterday I went back to the Royal. The good news continues. The sternum wound is now healing fast. It has now had a special vacuum dressing applied, at the request of the plastic surgeon, and it is doing well. Pecs surgery is still likely but there is a slim fighting chance we can avoid it altogether.
I haven't got my hopes up and am prepared for pecs surgery next week. Realistically, it will still happen. That's a call for the surgeons and if they say so, it will be once more into the fray.
I am no longer evil to be around. Still a long and tricky road ahead, but by God it will remain interesting.
Until next time,
Wednesday 28 March 2012
Bellbowrie
My brother in law is a fellow called Andrew. He is Camilla's brother.
Andrew is a good bloke. He has a lovely wife, Julie, and three polite and well mannered children, Jack, Max and Alice.
Andrew is cool for a bald guy. He's a sports journo and good company. He thinks he looks a bit like Bruce Willis but Camilla sees more George Costanza. He enjoys a beer and a barbeque and people warm to him easily.
Julie is an executive for a multinational software sales company. She travels a lot so Andrew does the Mr Mom thing pretty often. Julie is good fun too and our families get on well.
Andrew and Julie teach their kids to appreciate music from old guys who can sing and write songs, like Jimmy Buffett. They drink decent wine and spend their weekends ferrying the kids to various sports.
Andrew and Julie live in a suburb called Bellbowrie.
After spending a few months on Desolation Row, I decided to lend Andrew my car. It's a sexy little BMW sports - gunmetal grey and fast. No, I don't earn too much money. I bought it used and it is getting on a bit now.
My sister in law, Min, once drove this car from Brisbane to Toowoomba in around twelve minutes. Toowoomba is the provincial city in which Camilla and I were both born and raised. It's home to around 120,000 people and around 120 km West of Brisbane. Min drives fast because she lives in London. I received a speeding camera ticket in the mail, a few days after she left to return to London. Thanks, Min.
Anyway, Andrew took the car with great pleasure and it became a temporary resident of Bellbowrie. No one from Bellbowrie has ever seen a BMW, let alone owned one. The locals must be standing on footpaths pointing to the car, saying things like, "Where are the spotlights for pig shootin?" In Bellbowrie the folk drive utes with lots of stickers on them. They say things like "Rum Pig". Some of them have confederate flags. This is not a political statement. They just like the stripes because they've seen them on other desirable vehicles.
Julie earns good money. In fact, her bonuses equate to the GDP of the rest of Bellbowrie combined.
Andrew and Julie live in an enormous Tudor style house that towers over the rest of Bellbowrie. When they bought it, they set the record sales price for Bellbowrie. It will never be broken.
Andrew calls himself the Lord of Bellbowrie and signs correspondence and documents with the simple epitath bearing the name of his domicile: Bellbowrie.
Bellbowrie suffered hard in the Brisbane floods. So did my suburb, Indooroopilly. Indooroopilly is reasonably posh and our taxi drivers drive Mercs and Audis. Anyway, the folk of Bellbowrie were pretty upset that they were forgotten when Brisbane undertook the biggest, fastest and best cleanup and restoration ever seen after a natural disaster. We didn't forget them. It's called natural selection. The manor was OK and sat loftily above the devastation, albeit isolated for a while.
Kids in Bellbowrie are called Tiffanee, Chardonnay and Tarleena. They are required to get a least one tattoo on turning ten. Boys and girls.
Anyway, Andrew and Julie have been fantastic since I have been in hospital. They have cooked meals for our kids, driven them to school and helped Camilla immensely during a difficult time. Your help is very much appreciated. Thanks guys. I really owe you.
I'll be in for a while and can't drive again until at least 4 months after my transplant. So, Andrew, you have plenty of time to drive around Bellbowrie in the beemer listening to Margueritaville and collecting tithes from the serfs.
Until next time,
Andrew is a good bloke. He has a lovely wife, Julie, and three polite and well mannered children, Jack, Max and Alice.
Andrew is cool for a bald guy. He's a sports journo and good company. He thinks he looks a bit like Bruce Willis but Camilla sees more George Costanza. He enjoys a beer and a barbeque and people warm to him easily.
Julie is an executive for a multinational software sales company. She travels a lot so Andrew does the Mr Mom thing pretty often. Julie is good fun too and our families get on well.
Andrew and Julie teach their kids to appreciate music from old guys who can sing and write songs, like Jimmy Buffett. They drink decent wine and spend their weekends ferrying the kids to various sports.
Andrew and Julie live in a suburb called Bellbowrie.
After spending a few months on Desolation Row, I decided to lend Andrew my car. It's a sexy little BMW sports - gunmetal grey and fast. No, I don't earn too much money. I bought it used and it is getting on a bit now.
My sister in law, Min, once drove this car from Brisbane to Toowoomba in around twelve minutes. Toowoomba is the provincial city in which Camilla and I were both born and raised. It's home to around 120,000 people and around 120 km West of Brisbane. Min drives fast because she lives in London. I received a speeding camera ticket in the mail, a few days after she left to return to London. Thanks, Min.
Anyway, Andrew took the car with great pleasure and it became a temporary resident of Bellbowrie. No one from Bellbowrie has ever seen a BMW, let alone owned one. The locals must be standing on footpaths pointing to the car, saying things like, "Where are the spotlights for pig shootin?" In Bellbowrie the folk drive utes with lots of stickers on them. They say things like "Rum Pig". Some of them have confederate flags. This is not a political statement. They just like the stripes because they've seen them on other desirable vehicles.
Julie earns good money. In fact, her bonuses equate to the GDP of the rest of Bellbowrie combined.
Andrew and Julie live in an enormous Tudor style house that towers over the rest of Bellbowrie. When they bought it, they set the record sales price for Bellbowrie. It will never be broken.
Andrew calls himself the Lord of Bellbowrie and signs correspondence and documents with the simple epitath bearing the name of his domicile: Bellbowrie.
Bellbowrie suffered hard in the Brisbane floods. So did my suburb, Indooroopilly. Indooroopilly is reasonably posh and our taxi drivers drive Mercs and Audis. Anyway, the folk of Bellbowrie were pretty upset that they were forgotten when Brisbane undertook the biggest, fastest and best cleanup and restoration ever seen after a natural disaster. We didn't forget them. It's called natural selection. The manor was OK and sat loftily above the devastation, albeit isolated for a while.
Kids in Bellbowrie are called Tiffanee, Chardonnay and Tarleena. They are required to get a least one tattoo on turning ten. Boys and girls.
Anyway, Andrew and Julie have been fantastic since I have been in hospital. They have cooked meals for our kids, driven them to school and helped Camilla immensely during a difficult time. Your help is very much appreciated. Thanks guys. I really owe you.
I'll be in for a while and can't drive again until at least 4 months after my transplant. So, Andrew, you have plenty of time to drive around Bellbowrie in the beemer listening to Margueritaville and collecting tithes from the serfs.
Until next time,
Drawing the Ace of Hearts
In Australia, we have an Organ Donation Register and an Organ Donation List for each person willing or needing to participate in the donor process.
The Organ Donation Register lists all people who have generously decided to donate their organs should they die. Organs capable of donation include the heart, lungs, liver, tissue, bone marrow, eyes and skin. The organs will only be used if suitable for transplant. For instance, a car accident victim may be a poor donor of a heart due to the trauma experienced by the organ.
Putting a note on your drivers licence is not enough to get you on the register. You need to go on line to the Donate Life website and populate the fields. It's pretty easy. There's plenty of useful information there as well.
For obvious reasons, I can only tell you about the Organ Donation List for hearts. It lists all people seeking a heart transplant. There is a separate list for each State and New Zealand. The people on the list are sublisted as urgent, priority or routine.
An urgent recipient is one who is expected to die within 14 days if a donor is not found. The Eastern States and NZ have an organ sharing arrangement whereby an urgent recipient will get first entitlement to any matching heart in any jurisdiction (not just their own).
A heart is a match if it correlates in blood type, tissue type, size and to a lesser extent age and weight. Sex and political persuasion are both irrelevant.
A priority recipient will get first entitlement to a matching heart in the home jurisdiction, irrespective of how long or short he or she has been waiting. A priority recipient is one who has a special reason to get a heart quickly. I am on the Queensland priority list because I am surgically joined to the hip to the Impaler. The average wait time for a priority recipient in Queensland seems to be around four months. I've been on the list for about three.
A routine recipient will get a matching heart coming up in his or her jurisdiction if it is not first snaffled by an urgent or priority dude. If the particular jurisdiction cannot use the heart it will be offered to other jurisdictions for their own priority and routine lists.
Here at the Prince Charles we get hearts from everywhere including Adelaide, Auckland, Sydney and Melbourne. Sadly, Western Australia is a stand alone State because you cannot get a heart to or from the place in time.
There is no real benefit in being higher or lower in the list in terms of wait time. It's all about matching like with like.
For the record, my blood type is O Negative. My wife thinks that's quite appropriate because it reflects my life philosophy. So if you know a short fattish bloke (or lady) with the right blood type, please do the honourable thing and kill them. Make sure they are brain dead with a beating heart. No heart trauma please. You can test your victim's heart size on the basis that the heart is about the size of the clenched fist.
Being a maths geek at heart (pun intended) I've used my time on Desolation Row to calculate the approximate probability of my getting a heart on any given day. Take three decks of cards and remove all of the twos, threes fours. Then mark one card. Say one of the Aces of Hearts, for symmetry's sake. Then shuffle the three decks together. Every day, I get to draw one card. Only one. If it's the marked Ace of Hearts, I get the transplant that day. It's got to be the marked card, not any of the other two Aces of Hearts in the deck. If it's not the marked card, no transplant today. The used cards always get returned to the deck before the next draw. Every day I draw from the same full deck.
On average one lucky recipient in Queensland (whether urgent, priority or routine) will get a heart every month. In January, we got five! But none in February or March. Importantly, the deck has no memory. Even if there has been a heart on three consecutive days the odds for the fourth day remain the same - one in 120.
So my job is to keep alive and well and stay sitting at the card table. One day my card will come up. Your job is to get on the Register and tell your friends and family to do likewise.
Even if the deceased is on the Donation Register, the family can kibosh the potential donation. So tell your family your wishes.
Some countries have an Opt Out System. There is no Organ Donation Register, only an Opt Out Register. Everyone is deemed to be a donor on death unless he or she has signed up for the Opt Out Register. There is no family kibosh allowed.
This is a good system. It would increase organ donations that can be used successfully for transplant in Australia by twenty or thirty percent.
In Australia we have excellent doctors and hospitals and boast some of the best success rates for transplants in the world. Well done us! However, we have one of the poorer donation rates in the developed world. This means many people die waiting. People like me.
We all need to do something to support law reform for an Opt Out System. I'm going to write to the Federal and State Health Ministers. When I get better, I'm going to do a little lobbying. I hope you'll join me.
Until next time,
The Organ Donation Register lists all people who have generously decided to donate their organs should they die. Organs capable of donation include the heart, lungs, liver, tissue, bone marrow, eyes and skin. The organs will only be used if suitable for transplant. For instance, a car accident victim may be a poor donor of a heart due to the trauma experienced by the organ.
Putting a note on your drivers licence is not enough to get you on the register. You need to go on line to the Donate Life website and populate the fields. It's pretty easy. There's plenty of useful information there as well.
For obvious reasons, I can only tell you about the Organ Donation List for hearts. It lists all people seeking a heart transplant. There is a separate list for each State and New Zealand. The people on the list are sublisted as urgent, priority or routine.
An urgent recipient is one who is expected to die within 14 days if a donor is not found. The Eastern States and NZ have an organ sharing arrangement whereby an urgent recipient will get first entitlement to any matching heart in any jurisdiction (not just their own).
A heart is a match if it correlates in blood type, tissue type, size and to a lesser extent age and weight. Sex and political persuasion are both irrelevant.
A priority recipient will get first entitlement to a matching heart in the home jurisdiction, irrespective of how long or short he or she has been waiting. A priority recipient is one who has a special reason to get a heart quickly. I am on the Queensland priority list because I am surgically joined to the hip to the Impaler. The average wait time for a priority recipient in Queensland seems to be around four months. I've been on the list for about three.
A routine recipient will get a matching heart coming up in his or her jurisdiction if it is not first snaffled by an urgent or priority dude. If the particular jurisdiction cannot use the heart it will be offered to other jurisdictions for their own priority and routine lists.
Here at the Prince Charles we get hearts from everywhere including Adelaide, Auckland, Sydney and Melbourne. Sadly, Western Australia is a stand alone State because you cannot get a heart to or from the place in time.
There is no real benefit in being higher or lower in the list in terms of wait time. It's all about matching like with like.
For the record, my blood type is O Negative. My wife thinks that's quite appropriate because it reflects my life philosophy. So if you know a short fattish bloke (or lady) with the right blood type, please do the honourable thing and kill them. Make sure they are brain dead with a beating heart. No heart trauma please. You can test your victim's heart size on the basis that the heart is about the size of the clenched fist.
Being a maths geek at heart (pun intended) I've used my time on Desolation Row to calculate the approximate probability of my getting a heart on any given day. Take three decks of cards and remove all of the twos, threes fours. Then mark one card. Say one of the Aces of Hearts, for symmetry's sake. Then shuffle the three decks together. Every day, I get to draw one card. Only one. If it's the marked Ace of Hearts, I get the transplant that day. It's got to be the marked card, not any of the other two Aces of Hearts in the deck. If it's not the marked card, no transplant today. The used cards always get returned to the deck before the next draw. Every day I draw from the same full deck.
On average one lucky recipient in Queensland (whether urgent, priority or routine) will get a heart every month. In January, we got five! But none in February or March. Importantly, the deck has no memory. Even if there has been a heart on three consecutive days the odds for the fourth day remain the same - one in 120.
So my job is to keep alive and well and stay sitting at the card table. One day my card will come up. Your job is to get on the Register and tell your friends and family to do likewise.
Even if the deceased is on the Donation Register, the family can kibosh the potential donation. So tell your family your wishes.
Some countries have an Opt Out System. There is no Organ Donation Register, only an Opt Out Register. Everyone is deemed to be a donor on death unless he or she has signed up for the Opt Out Register. There is no family kibosh allowed.
This is a good system. It would increase organ donations that can be used successfully for transplant in Australia by twenty or thirty percent.
In Australia we have excellent doctors and hospitals and boast some of the best success rates for transplants in the world. Well done us! However, we have one of the poorer donation rates in the developed world. This means many people die waiting. People like me.
We all need to do something to support law reform for an Opt Out System. I'm going to write to the Federal and State Health Ministers. When I get better, I'm going to do a little lobbying. I hope you'll join me.
Until next time,
And so we begin
My name is Paul Betros. I have decided to create this blog for two reasons. Firstly, I am an unspeakably good writer. Secondly, I have a hell of a story to tell.
A few introductions. Allow me to be pompous and announce my dramatis personae.
I myself am a middle aged middle class lawyer in Brisbane, Australia. I am a partner of a large law firm called HopgoodGanim. When at work, I do commercial litigation with a focus on insolvency. Basically I am a commercial vulture who gets paid to feed off corporate carrion. But I am nonetheless a pretty decent guy. You can work that out yourself should you decide to read along whenever I have the self indulgence to write something.
I am married to Camilla, who is the most wonderful wife one could have. Seriously. I proposed to her two weeks after we met (as a 24 year old kid, mind you!) and we have had three fights in nearly sixteen years of marriage. The least rational, and best, decision I have ever made.
I have two children. My daughter, Imogen, is twelve and has just started high school. She is clever and gregarious. She is also stunningly pretty in a way that makes a father want to buy a shotgun. She's a good kid and the poster girl for good parenting. She goes to a posh school on a hill called Stuartholme. The school charges a fee which feels like half a million dollars a term, or close to it. Immy says she us happy so it's a fair price.
My son, Charlie, is four and he has autism. He is delightful. He goes to an early intervention centre called AEIOU and has been there a little over a year. It is a wonderful place and he is doing very well. He didn't speak before he started, and now speaks in basic sentences. The Centre charges a fee which feels like around three million dollars a term, or close to it. Charlie can now say that he likes school so it's an incredibly fair price.
By the way, I don't earn enough money to pay these school fees so I sell drugs and extort small countries to ransom to get by.
I am presently lying in a bed in a hospital ward at the Prince Charles Hospital in Brisbane, Australia, waiting for a heart transplant. I caught a virus mid last year that caused me to have severe pneumonia and (unbeknownst to anyone) started attacking my heart. The heart was otherwise healthy and I was in pretty good shape for a slightly pudgy 39 year old lawyer. Anyway, the virus brought about cardiomyopathy and caused heart failure. Just bad luck. Not lifestyle related or hereditary. Just a nasty little airborne bullet with my name on it. They found it days before I would have died. So I guess I am lucky!
I am now hooked up 24/7 to an artificial heart pump called a Ventricular Assistance Device, or VAD. I call it the Impaler. It keeps me alive so I am very fond of it. I need to have a back up machine with me at all times, in case it fails. Camilla calls the VAD William and the back up machine Harry, as in the heir and the spare. She is pretty witty for a mum.
The Impaler is on a trolley and I push it around. I can get away from hospital for short outings. It's about the size of a carryon bag. It ticks like a grandfather clock and alarms if it's feeling neglected or thinks I am going to die.
I am on a special list of poor bastards waiting for a heart transplant. When a donor heart becomes available my doctors will, on a few hours' notice, get me into surgery, remove the Impaler and put a dead person's heart into me. Until I get the call, I have to stay in hospital and wait it out.
I have a team of doctors who manage the project. A big team of clever people. They are very good and I am confident that they will get me well and back to work and family one day. Everyone says his doctor is the best. Seinfeld once did a pretty funny funny rant about how everyone says that - no one says that my guy was the bottom of his class at med school and majored in beer. Well my guys are the best. They really are.
I've had a turbulent ride in the nearly seven months I've been in hospital. I was in a coma for two months after the initial surgery and nearly died several times. Camilla had to tell Immy more than once that I was going to die, and I am alive against some pretty long odds. I hope some of you put some money on me at Ladbrokes. You would have been paid big.
I have experienced every VAD complication in the book, and there are many more to come. If I remain lucky, I get to contend with all the transplant complications. However, I have make a good living defying the transplant statistics and will continue to do so. This will not beat me. I've told the Reaper to sod off and he actually listened!
I expect you remember the world famous Brisbane floods early last year. Well, we got seven feet of water through the house and were in temporary accommodation for six months. We got back home a few weeks before I got pneumonia.
I guess you could say I'm rewriting the Book of Job. Heart transplant, autism, floods. And my dog died. Job had it pretty good really. Anyway, it all makes for a good story so tell your friends to tune in (or whatever you do with a blog). As you've probably gathered, I am a not so repressed writer and doing this is actually pretty therapeutic. I'm also a Luddite so bear with me on that front.
The more perceptive among you will note that I've titled this blog in honour of a classic Dylan tune. Bob is cool. I'll refer to him occasionally in future posts. He has helped me out a lot over many a long day in hospital. I don't look for messages or the meaning of life in his music. He just does good music and clever lyrics. That's enough for me.
Anyway, hope you liked the intro. Jump on board and join the road trip!
A few introductions. Allow me to be pompous and announce my dramatis personae.
I myself am a middle aged middle class lawyer in Brisbane, Australia. I am a partner of a large law firm called HopgoodGanim. When at work, I do commercial litigation with a focus on insolvency. Basically I am a commercial vulture who gets paid to feed off corporate carrion. But I am nonetheless a pretty decent guy. You can work that out yourself should you decide to read along whenever I have the self indulgence to write something.
I am married to Camilla, who is the most wonderful wife one could have. Seriously. I proposed to her two weeks after we met (as a 24 year old kid, mind you!) and we have had three fights in nearly sixteen years of marriage. The least rational, and best, decision I have ever made.
I have two children. My daughter, Imogen, is twelve and has just started high school. She is clever and gregarious. She is also stunningly pretty in a way that makes a father want to buy a shotgun. She's a good kid and the poster girl for good parenting. She goes to a posh school on a hill called Stuartholme. The school charges a fee which feels like half a million dollars a term, or close to it. Immy says she us happy so it's a fair price.
My son, Charlie, is four and he has autism. He is delightful. He goes to an early intervention centre called AEIOU and has been there a little over a year. It is a wonderful place and he is doing very well. He didn't speak before he started, and now speaks in basic sentences. The Centre charges a fee which feels like around three million dollars a term, or close to it. Charlie can now say that he likes school so it's an incredibly fair price.
By the way, I don't earn enough money to pay these school fees so I sell drugs and extort small countries to ransom to get by.
I am presently lying in a bed in a hospital ward at the Prince Charles Hospital in Brisbane, Australia, waiting for a heart transplant. I caught a virus mid last year that caused me to have severe pneumonia and (unbeknownst to anyone) started attacking my heart. The heart was otherwise healthy and I was in pretty good shape for a slightly pudgy 39 year old lawyer. Anyway, the virus brought about cardiomyopathy and caused heart failure. Just bad luck. Not lifestyle related or hereditary. Just a nasty little airborne bullet with my name on it. They found it days before I would have died. So I guess I am lucky!
I am now hooked up 24/7 to an artificial heart pump called a Ventricular Assistance Device, or VAD. I call it the Impaler. It keeps me alive so I am very fond of it. I need to have a back up machine with me at all times, in case it fails. Camilla calls the VAD William and the back up machine Harry, as in the heir and the spare. She is pretty witty for a mum.
The Impaler is on a trolley and I push it around. I can get away from hospital for short outings. It's about the size of a carryon bag. It ticks like a grandfather clock and alarms if it's feeling neglected or thinks I am going to die.
I am on a special list of poor bastards waiting for a heart transplant. When a donor heart becomes available my doctors will, on a few hours' notice, get me into surgery, remove the Impaler and put a dead person's heart into me. Until I get the call, I have to stay in hospital and wait it out.
I have a team of doctors who manage the project. A big team of clever people. They are very good and I am confident that they will get me well and back to work and family one day. Everyone says his doctor is the best. Seinfeld once did a pretty funny funny rant about how everyone says that - no one says that my guy was the bottom of his class at med school and majored in beer. Well my guys are the best. They really are.
I've had a turbulent ride in the nearly seven months I've been in hospital. I was in a coma for two months after the initial surgery and nearly died several times. Camilla had to tell Immy more than once that I was going to die, and I am alive against some pretty long odds. I hope some of you put some money on me at Ladbrokes. You would have been paid big.
I have experienced every VAD complication in the book, and there are many more to come. If I remain lucky, I get to contend with all the transplant complications. However, I have make a good living defying the transplant statistics and will continue to do so. This will not beat me. I've told the Reaper to sod off and he actually listened!
I expect you remember the world famous Brisbane floods early last year. Well, we got seven feet of water through the house and were in temporary accommodation for six months. We got back home a few weeks before I got pneumonia.
I guess you could say I'm rewriting the Book of Job. Heart transplant, autism, floods. And my dog died. Job had it pretty good really. Anyway, it all makes for a good story so tell your friends to tune in (or whatever you do with a blog). As you've probably gathered, I am a not so repressed writer and doing this is actually pretty therapeutic. I'm also a Luddite so bear with me on that front.
The more perceptive among you will note that I've titled this blog in honour of a classic Dylan tune. Bob is cool. I'll refer to him occasionally in future posts. He has helped me out a lot over many a long day in hospital. I don't look for messages or the meaning of life in his music. He just does good music and clever lyrics. That's enough for me.
Anyway, hope you liked the intro. Jump on board and join the road trip!
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