Yes, I know it's a dreadful post title. Revolting song. The sort of thing the anti-Dylan would sing. But who among you will challenge it to be apt? My mate Nick Ferrett came up with an alternative analogy based on a Madonna song. Enough said.
I blame the title on the drugs I am presently funnelling through my body. I intend to retain one of the major Accountancy firms to calculate the precise number I take every day. This will come down over time but for the moment it's breakfast with a bucket of drugs (literally), followed by a few drugs through the day and then finished with dinner and drugs. I think I did die in theatre. I have been reincarnated as Keith Richards.
I am now back with my good pals in Ward 1B. We are working on a timetable for a release date. All going well, I will be home soon.
The heart is going well. I have now have two biopsies and both indicate that we do not have any realistic rejection issues at this stage.
What's a biopsy, you ask? Good question. A biopsy is a pleasant little procedure whereby a cardiologist will put a tool through your neck, reach into the heart, snip out a few little morsels and retrieve them for examination. For the next few weeks, I have them weekly. Like most things medical, they are nowhere near as gruesome as they sound. Quite the opposite to practising law, where a simple document can be made horrendously complex with little effort.
I must say that I got a major thrill watching my new heart beating strongly and independently on the monitor in theatre. It was an amazing thing to experience.
I am now back into rehab. My strength is returning quickly and each day I can do more. Lisa remains a harsh taskmaster. This is God's punishment for every glass of wine I have ever drunk.
Moreover, I am now almost completely free from all attachments. It's now just one little drain. This would be wonderful if I could use my arms. For the next few weeks, I must keep the arms immobile. I can still eat, type and brush my teeth. I just cannot put any weight through the arms. Yes, it is as difficult as you expect. This is God's punishment for every glass of beer I have ever drunk.
You should be thankful I am permitted to type. I was not going to resort to channelling Christy Brown to keep you updated.
I caught up with Noel yesterday. He is doing amazingly well. If I am doing this well in a month I shall be very pleased indeed.
More good news lies in the fact that Mandy has now gone home with her VAD to wait for a heart. This is a much better option than hospital for anyone, let alone a twenty year old. You'll get there, girl. You will.
One of the many drugs I am taking is a thing called Prednisone. It's a steroid and I am putting it down in massive doses. This, for me, can be best explained in the words of Kramer. "I'm on no sleep, Jerry. No sleep."
I get around four hours of sleep a night. I suppose that's a lawyer's sleep in.
Until next time,
Monday, 14 May 2012
Friday, 11 May 2012
Delusions and Nightmares
My elation in getting a new heart was tempered by the fact that I would in fact require the pectoral surgery. This was completely unexpected as Pinochet had apparently healed well. Not well enough, regrettably. So much for Greg Inglis and his wobbly field goal.
The pecs surgery was due on the following Sunday, 6 May 2012. I still could not stand. I could barely speak. I was devastated. I had it in my head, mistakenly, that the pecs surgery would be in two parts. Moreover, I decided that I was going to die in theatre.
Heavy anaesthetic drugs do strange things to strange people. They give me delusions. Horrible, animated delusions. Inanimate objects will form into monstrosities. I would close my eyes over one hundred times over the course of that Sunday night. Each time, I saw myself dead on the operating table.
It was lucid. I could not separate nightmare from reality. I knew I was being irrational. It made little difference. I was unsure where I was.
Camilla left at eleven to get some sleep. She promised that she would come back to the hospital if I needed her. By 2.30am I did. However, the ICU nurse told me to harden up and not bother her.
At 4.30am I asked for her again. Again the nurse refused. I explained my visions of death on the operating table. She said that it was minor surgery and I was being silly.
I asked for Camilla again at 5.45am. The nurse called her for me. I had not slept a wink.
I was distraught. I explained my understanding of the two bouts of surgery. Camilla gently told me that I didn't need to sleep that night and would only undergo one round of pecs surgery.
We waited out the pecs surgery, calmly and quietly. I was then gently put to sleep again.
Until next time,
The pecs surgery was due on the following Sunday, 6 May 2012. I still could not stand. I could barely speak. I was devastated. I had it in my head, mistakenly, that the pecs surgery would be in two parts. Moreover, I decided that I was going to die in theatre.
Heavy anaesthetic drugs do strange things to strange people. They give me delusions. Horrible, animated delusions. Inanimate objects will form into monstrosities. I would close my eyes over one hundred times over the course of that Sunday night. Each time, I saw myself dead on the operating table.
It was lucid. I could not separate nightmare from reality. I knew I was being irrational. It made little difference. I was unsure where I was.
Camilla left at eleven to get some sleep. She promised that she would come back to the hospital if I needed her. By 2.30am I did. However, the ICU nurse told me to harden up and not bother her.
At 4.30am I asked for her again. Again the nurse refused. I explained my visions of death on the operating table. She said that it was minor surgery and I was being silly.
I asked for Camilla again at 5.45am. The nurse called her for me. I had not slept a wink.
I was distraught. I explained my understanding of the two bouts of surgery. Camilla gently told me that I didn't need to sleep that night and would only undergo one round of pecs surgery.
We waited out the pecs surgery, calmly and quietly. I was then gently put to sleep again.
Until next time,
Lady and I look out tonight from Desolation Row
I woke up slowly in ICU. For a while, I remained on breathing support. It took ages for the doctors to allow me to breath real air. It was all I wanted to do but they denied me this indulgence for an eternity.
The Impaler was no more. I knew not where it went nor cared how it may have gotten there. I felt far from free. I was attached to a multiple of drains and machines. I felt more helpless and restricted than I had for many months previous. The dream of being a free man remained just that.
I was tired. Wasted in fact. This hardly seemed the defining moment it had promised to be.
Nonetheless, I had a new heart inside me. One that Dr Thomson described as a very good match. This was enough. All else would pass. The new heart would last.
Camilla was with me. Probably for days. I could not fathom the passage of time.
I do recall Camilla telling me we'd made it. I told her I loved her. We looked out over Desolation Row. I can recall little else.
Until next time,
The Impaler was no more. I knew not where it went nor cared how it may have gotten there. I felt far from free. I was attached to a multiple of drains and machines. I felt more helpless and restricted than I had for many months previous. The dream of being a free man remained just that.
I was tired. Wasted in fact. This hardly seemed the defining moment it had promised to be.
Nonetheless, I had a new heart inside me. One that Dr Thomson described as a very good match. This was enough. All else would pass. The new heart would last.
Camilla was with me. Probably for days. I could not fathom the passage of time.
I do recall Camilla telling me we'd made it. I told her I loved her. We looked out over Desolation Row. I can recall little else.
Until next time,
Thursday, 10 May 2012
Once more into the fray
Well, the night I began preparing for the TOE, I got the hint of the miracle I had desperately sought. I cannot reveal the date for reasons of confidentiality.
That night, Doctors Thomson and Javorksy entered my room. It was around 8.30am and deadly quiet. They told me that they may have an offer of a heart for me. It was far from certain, but the first real possibility I had had.
I called Bishop Morris and he came to the hospital. As did Camilla and my parents. We prayed like we were possessed. Bishop Morris had written a prayer for the occasion. It was beautiful. It sought guidance of the medical team and assistance for the donor family making the agonising decision before them.
By around 11.00am, we received confirmation that the donor was likely to proceed. It was still far from certain, but I was prepared for surgery.
I was washed and shaved and taken to theatre to wait. I waited for a few hours whilst the theatre team itself awaited the final word. I was surprisingly relaxed and calm. I did not know why.
At around 2.00am, Doctor Thomson said that the offer was proceeding.
So with apologies to King Henry V at Agincourt, and the film The Grey, it was:
Once more into the fray, my friends,
Into the only good fight we will ever know,
Live or Die Today,
Live or Die Today.
I cannot recall being anaesthetised, but he was an incredibly nice chap who did it. I went to sleep. Would this be the final parting of the ways between me and my feeble old heart? I had heard stories of people who had awoken with their VADs, and poor hearts, due to the transplant being aborted at a late stage. I decided to place my faith in God and Doctor Thomson.
Until next time,
That night, Doctors Thomson and Javorksy entered my room. It was around 8.30am and deadly quiet. They told me that they may have an offer of a heart for me. It was far from certain, but the first real possibility I had had.
I called Bishop Morris and he came to the hospital. As did Camilla and my parents. We prayed like we were possessed. Bishop Morris had written a prayer for the occasion. It was beautiful. It sought guidance of the medical team and assistance for the donor family making the agonising decision before them.
By around 11.00am, we received confirmation that the donor was likely to proceed. It was still far from certain, but I was prepared for surgery.
I was washed and shaved and taken to theatre to wait. I waited for a few hours whilst the theatre team itself awaited the final word. I was surprisingly relaxed and calm. I did not know why.
At around 2.00am, Doctor Thomson said that the offer was proceeding.
So with apologies to King Henry V at Agincourt, and the film The Grey, it was:
Once more into the fray, my friends,
Into the only good fight we will ever know,
Live or Die Today,
Live or Die Today.
I cannot recall being anaesthetised, but he was an incredibly nice chap who did it. I went to sleep. Would this be the final parting of the ways between me and my feeble old heart? I had heard stories of people who had awoken with their VADs, and poor hearts, due to the transplant being aborted at a late stage. I decided to place my faith in God and Doctor Thomson.
Until next time,
Life gets somewhat toey
Recently, Doctors Thomson and Javorsky delivered me some potentially very bad news.
I had, at Dr Javorky's request, underwent a routine ecco-cardiogram. This is a scan whereby an ultrasound is taken of the heart, to see how it is being supported by the VAD. It is very much a routine scan, with no insidious purpose underlying the procedure.
The results shocked me. Inside the heart was an area of stuff. The doctors could not definitively say what this stuff was. It was inside the heart behind the canula that went into the left ventricle.
The first possibility was the worst. The stuff could be a blood clot. If so, it could break away and make its way to the brain. This could cause a stroke or brain damage.
The second possibility was better, but not much so. The stuff could be an infection. If so, it could infect the bloodstream and could serious damage. I had dealt with a VAD infection before and it very nearly killed me.
The third possibility was the best. The stuff could be residual muscle tissue, left over from the insertion of the VAD canula. If so, it was probably benign.
Doctor Brown, God love him, had a recollection that he had seen the stuff on an ecco-cardiogram some months previous. He suspected it to be benign residual muscle tissue. He asked another member of the team, Doctor Sam Ballinder, to review the previous scans.
Nonetheless, it was not a matter to be left to chance. The medicos decided I needed to undergo a TOE. This is a procedure whereby a camera is inserted down the throat into the stomach, in order to obtain a better view of the heart, and the stuff. I have had a TOE before and it was far from pleasant. But I had no option and duly signed the consent form for the TOE.
The TOE was scheduled for the following morning and I began the obligatory fast. However, I was far from sanguine. Things were getting ugly. Life on a VAD was proving to be more than precarious. I needed a little miracle. No, a big one. Lazarus style. I prayed for help. I was desperate.
Until next time,
I had, at Dr Javorky's request, underwent a routine ecco-cardiogram. This is a scan whereby an ultrasound is taken of the heart, to see how it is being supported by the VAD. It is very much a routine scan, with no insidious purpose underlying the procedure.
The results shocked me. Inside the heart was an area of stuff. The doctors could not definitively say what this stuff was. It was inside the heart behind the canula that went into the left ventricle.
The first possibility was the worst. The stuff could be a blood clot. If so, it could break away and make its way to the brain. This could cause a stroke or brain damage.
The second possibility was better, but not much so. The stuff could be an infection. If so, it could infect the bloodstream and could serious damage. I had dealt with a VAD infection before and it very nearly killed me.
The third possibility was the best. The stuff could be residual muscle tissue, left over from the insertion of the VAD canula. If so, it was probably benign.
Doctor Brown, God love him, had a recollection that he had seen the stuff on an ecco-cardiogram some months previous. He suspected it to be benign residual muscle tissue. He asked another member of the team, Doctor Sam Ballinder, to review the previous scans.
Nonetheless, it was not a matter to be left to chance. The medicos decided I needed to undergo a TOE. This is a procedure whereby a camera is inserted down the throat into the stomach, in order to obtain a better view of the heart, and the stuff. I have had a TOE before and it was far from pleasant. But I had no option and duly signed the consent form for the TOE.
The TOE was scheduled for the following morning and I began the obligatory fast. However, I was far from sanguine. Things were getting ugly. Life on a VAD was proving to be more than precarious. I needed a little miracle. No, a big one. Lazarus style. I prayed for help. I was desperate.
Until next time,
Monday, 30 April 2012
Deserving of four michelin stars
Yesterday, Queensland chef Matt Golinski was released from the Royal Brisbane Hospital.
For the benefit of interstate and international readers, Golinski suffered horrific burns in a house fire on boxing day last year that claimed the lives of his wife and three young daughters. After admission to hospital, he was put into an induced coma for around two months. This is about the same length of time I was under, so I have some understanding of the rehabilitative work that Matt has put in, and will continue to put in, to rebuild his body from its post-coma state.
Matt has worked exceedingly hard to rebuild his shattered body and life. The fact that he is now well enough to be discharged is the ultimate testament to the man's determination and strength.
Like me, Matt turned 40 in hospital a few weeks ago. But it's there that the parallels end. I will never understand the horrific physical pain and suffering that this man endured, nor the devastating emotional pain of having to recover from a tragedy that has cruelly taken my family from me. Matt Golinski is a remarkable man. A genuine hero in a world that creates all too many for reasons all too spurious. I tip me hat to this brave and truly inspirational bloke. His makes my own struggle appear somewhat modest.
Until next time,
For the benefit of interstate and international readers, Golinski suffered horrific burns in a house fire on boxing day last year that claimed the lives of his wife and three young daughters. After admission to hospital, he was put into an induced coma for around two months. This is about the same length of time I was under, so I have some understanding of the rehabilitative work that Matt has put in, and will continue to put in, to rebuild his body from its post-coma state.
Matt has worked exceedingly hard to rebuild his shattered body and life. The fact that he is now well enough to be discharged is the ultimate testament to the man's determination and strength.
Like me, Matt turned 40 in hospital a few weeks ago. But it's there that the parallels end. I will never understand the horrific physical pain and suffering that this man endured, nor the devastating emotional pain of having to recover from a tragedy that has cruelly taken my family from me. Matt Golinski is a remarkable man. A genuine hero in a world that creates all too many for reasons all too spurious. I tip me hat to this brave and truly inspirational bloke. His makes my own struggle appear somewhat modest.
Until next time,
Thursday, 26 April 2012
ANZAC Week on Desolation Row
This week, Australia and New Zealand celebrated ANZAC Day. For the benefit of foreign readers, ANZAC Day is a commemoration of soldiers who have served our nations in conflict, and in particular suffered mortal or other injury. It originated as a memorial for soldiers who served in the First World War in Turkey and Northern France but now extends more generally to active service in all conflicts.
On Tuesday, Noel was discharged from hospital. The Midnight Cowboy packed his belongings and ambled off into the sunset. He was elated and left us feeling strong and fit. He was well ready to move on from hospital life and had endured a long and difficult wait on the transplant list. All up he had been in hospital for nearly six months. He had experienced the supreme disappointment of three close calls for organs. Two were hearts that were not the right size for him and he was, at the time, not physically well enough to undergo transplant surgery for the third. Close calls like this are not uncommon on the transplant list and fortunately I am yet to experience the tumultuous ecstasy and agony of such an event. Noel put in the hard yards and well deserved the relatively smooth run he was blessed with when the right heart finally became available for him. I will miss his presence on the ward and our days are much quieter without him. The need for a heart transplant has its genesis in many and diverse causes and it is an affliction that will bring together a random group of patients from all walks of life. In many respects, I have had nothing at all in common with any of Noel, Catherine and Mandy, other than our VADs and shared need for a heart transplant. We have all dealt with the situation in our own way. So far as the hospital is concerned, there can be no one-size-fits-all program for the care and management of a VAD/transplant patient. I wish Noel well and look forward to catching up with him when I too have become a former occupant of this place.
Wednesday was ANZAC day and a public holiday. I left the Hospital with ambitious plans. Camilla and I would take the children for a Barbecue in a large and popular water park, to join the Bellbowries and some friends for the afternoon. It was always going to be a challenge for our family to undertake such an expedition with a man and his VAD and an autistic boy who, given previous history, would be likely to be traumatised at the thought of submersion in water. Our more capable companions would be bringing all the gear and food and Julie promised to help with Charlie. We decided that nothing ventured would be nothing gained so it was off to the water park we went, bringing only ourselves, our VADs and two bottles of decent red from the cellar. One was a 2002 Gramps Barossa Shiraz; the other a 2006 Bungawarra Granite Belt Cabernet.
The afternoon was difficult for us. Then again, most things that are easily achieved for a "normal" family are difficult for us at present. The park was ridiculously crowded and the terrain unsuited to pushing a VAD. Charlie freaked when he saw children paddling in the shallow pools and wanted to be as far from the water as possible. Rather than entertain the idea of swings or rides, he just wanted to visit the public toilets, which had long queues of impatient park people. Imogen just wanted to read a book. I felt horrendously disabled and could contribute nothing of practical use to the proceedings. The barbecues were in short supply and frustratingly tepid. It took forever to render meat dry and grey. It should have been a terrible afternoon. But it wasn't. Not by any means. Julie took Charlie by the hand and led him around the water park to find things he enjoyed. He found playground equipment he liked. Even a few toilets. Andrew cooked the meat and Erich sprinkled it with lovely South African allspice. Conversation flowed easily. Imogen ditched the book and started talking to the other girls. The wine was excellent.
It's safe and easy to opt out of living because it is just too difficult with a VAD and a child with autism. Things that are easy for most families are difficult and frustrating for us. Nonetheless, the VAD is temporary and life cannot come to a complete halt. The show must go on.
Yesterday, my medical team decided to trial another painkiller regime. I had pushed them to indulge me this little experiment, because I was anxious to get this right before the transplant surgery. We decided to revert to a hit of good old fashioned morphine - tried and tested and excellent for heavy duty pain relief. We added a dose of stematil to mitigate the vertigo and a dose of ondanzitron for nausea.
The result was promising. I got a little vertigo, but nothing like the spinning room sensation I had experienced on other painkillers. I had no nausea. I could easily stand and even mange 15 minutes on the treadmill. I vomited once, copiously and violently, after the second dose. Far from ideal, but manageable. My pharmacist hopes that the vomiting can be managed with maxillon or perhaps my old buddy Dom Perignon. All in all, we now have something we can work with.
Today, Camilla and I got to the movies. This was the first time we had attempted the movies since my confinement. Again, it was ambitious and easily could have been too difficult with a VAD. Again, it proved a very worthwhile experience. We saw Salmon Fishing in the Yemen, a film adapted from a novel written by one of my favourite writers, Paul Torday. It was very good and we both thoroughly enjoyed it. It was easy for us to find good seats, as it was a quiet morning session. The Impaler ticked and whirred loudly throughout, but we had the crowd behind us and cared little whether the noise may have bothered a few people we didn't know and would never see again.
I am slowly coming to the realisation that even now life is for living and changed circumstances just mean that we carry on a little differently than we did before, or tackle things a little differently to everyone else. There is much merit in just getting on with life until the donor organ arrives. We know not the hour, nor the day. But in the meantime, life is for living.
Until next time,
On Tuesday, Noel was discharged from hospital. The Midnight Cowboy packed his belongings and ambled off into the sunset. He was elated and left us feeling strong and fit. He was well ready to move on from hospital life and had endured a long and difficult wait on the transplant list. All up he had been in hospital for nearly six months. He had experienced the supreme disappointment of three close calls for organs. Two were hearts that were not the right size for him and he was, at the time, not physically well enough to undergo transplant surgery for the third. Close calls like this are not uncommon on the transplant list and fortunately I am yet to experience the tumultuous ecstasy and agony of such an event. Noel put in the hard yards and well deserved the relatively smooth run he was blessed with when the right heart finally became available for him. I will miss his presence on the ward and our days are much quieter without him. The need for a heart transplant has its genesis in many and diverse causes and it is an affliction that will bring together a random group of patients from all walks of life. In many respects, I have had nothing at all in common with any of Noel, Catherine and Mandy, other than our VADs and shared need for a heart transplant. We have all dealt with the situation in our own way. So far as the hospital is concerned, there can be no one-size-fits-all program for the care and management of a VAD/transplant patient. I wish Noel well and look forward to catching up with him when I too have become a former occupant of this place.
Wednesday was ANZAC day and a public holiday. I left the Hospital with ambitious plans. Camilla and I would take the children for a Barbecue in a large and popular water park, to join the Bellbowries and some friends for the afternoon. It was always going to be a challenge for our family to undertake such an expedition with a man and his VAD and an autistic boy who, given previous history, would be likely to be traumatised at the thought of submersion in water. Our more capable companions would be bringing all the gear and food and Julie promised to help with Charlie. We decided that nothing ventured would be nothing gained so it was off to the water park we went, bringing only ourselves, our VADs and two bottles of decent red from the cellar. One was a 2002 Gramps Barossa Shiraz; the other a 2006 Bungawarra Granite Belt Cabernet.
The afternoon was difficult for us. Then again, most things that are easily achieved for a "normal" family are difficult for us at present. The park was ridiculously crowded and the terrain unsuited to pushing a VAD. Charlie freaked when he saw children paddling in the shallow pools and wanted to be as far from the water as possible. Rather than entertain the idea of swings or rides, he just wanted to visit the public toilets, which had long queues of impatient park people. Imogen just wanted to read a book. I felt horrendously disabled and could contribute nothing of practical use to the proceedings. The barbecues were in short supply and frustratingly tepid. It took forever to render meat dry and grey. It should have been a terrible afternoon. But it wasn't. Not by any means. Julie took Charlie by the hand and led him around the water park to find things he enjoyed. He found playground equipment he liked. Even a few toilets. Andrew cooked the meat and Erich sprinkled it with lovely South African allspice. Conversation flowed easily. Imogen ditched the book and started talking to the other girls. The wine was excellent.
It's safe and easy to opt out of living because it is just too difficult with a VAD and a child with autism. Things that are easy for most families are difficult and frustrating for us. Nonetheless, the VAD is temporary and life cannot come to a complete halt. The show must go on.
Yesterday, my medical team decided to trial another painkiller regime. I had pushed them to indulge me this little experiment, because I was anxious to get this right before the transplant surgery. We decided to revert to a hit of good old fashioned morphine - tried and tested and excellent for heavy duty pain relief. We added a dose of stematil to mitigate the vertigo and a dose of ondanzitron for nausea.
The result was promising. I got a little vertigo, but nothing like the spinning room sensation I had experienced on other painkillers. I had no nausea. I could easily stand and even mange 15 minutes on the treadmill. I vomited once, copiously and violently, after the second dose. Far from ideal, but manageable. My pharmacist hopes that the vomiting can be managed with maxillon or perhaps my old buddy Dom Perignon. All in all, we now have something we can work with.
Today, Camilla and I got to the movies. This was the first time we had attempted the movies since my confinement. Again, it was ambitious and easily could have been too difficult with a VAD. Again, it proved a very worthwhile experience. We saw Salmon Fishing in the Yemen, a film adapted from a novel written by one of my favourite writers, Paul Torday. It was very good and we both thoroughly enjoyed it. It was easy for us to find good seats, as it was a quiet morning session. The Impaler ticked and whirred loudly throughout, but we had the crowd behind us and cared little whether the noise may have bothered a few people we didn't know and would never see again.
I am slowly coming to the realisation that even now life is for living and changed circumstances just mean that we carry on a little differently than we did before, or tackle things a little differently to everyone else. There is much merit in just getting on with life until the donor organ arrives. We know not the hour, nor the day. But in the meantime, life is for living.
Until next time,
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