Yesterday afternoon, after 260 long and arduous days in confinement, I was finally released from Desolation Row. I am now at home.
I am officially the 329th heart transplant performed in Queensland. Well done to my medical team. You are the best, bar none.
I have no idea who my donor was or the circumstances of death. But I do express my eternal thanks to him (or her) and the family who made the decision to donate the heart under the most difficult of circumstances. You saved my life. You made a profound difference.
I feel a little like Rip van Winkle. The world seems to have changed. My children have grown and matured since I last remember spending significant time with them. Imogen has become a beautiful teenager and Charlie a tall little boy.
It's great to be back in my own house. My life is no longer bed-centric. I can rest, recuperate and rehabilitate on terms closer to my own. I can help Imogen with her homework and read Charlie his bedtime stories. I can enjoy a cup of coffee with Camilla on my own sofa. Simple pleasures indeed.
The family is delighted to have me home. Charlie was surprised to see me when he woke up. He said, "Daddy not in hospital. Daddy is at home." Thanks, AEIOU. Those words were priceless gems.
My movements are still very restricted as a consequence of the pecs flap surgery. You'd be surprised how often you need to use your arms. Actually, you probably wouldn't. Nonetheless, we are getting by and it is only temporary. Another month and I'll be free from the restrictions. It's a small price to pay in the big scheme of things.
On the cardio front everything is going extremely well. The three biopsies I've had have all produced great results. It's early days but all signs are that the new heart is a great match. My body has recovered well and I am on track to return to a normal life.
I need to accept that this will take months of recovery. It must be measured and slow. My body has a massive job to do and I just need to give it time and space to do it.
It is important that I avoid infection as my immune system is now suppressed. This is difficult given that it is now cold and flu season. I must be zealous in washing my hands and avoiding sick people.
We organised a couple of removal trucks to transport a month's worth of my drugs from hospital to home. It is a staggering number of pills that I put into my body every day. This will improve over time. I will get into a routine and just get on with things.
Life will not be the same. That's part of the deal and non-negotiable. The old road is no longer able to be travelled and I must embrace the new one. It can still be long and fulfilling.
Until next time,
Wednesday 23 May 2012
Monday 14 May 2012
Forbidden fruits
As you will well know from previous posts (and I am sure you have read them all) there are certain dietary restrictions that go with being an organ recipient. And that's what I now am. So, ipso facto they should apply to me. Like any good lawyer, I am looking for loopholes and generous interpretations.
These restrictions exist because my immune system is now greatly suppressed. Forever. So as clever lawyer boy as I would like to be, the rules are the rules.
I cannot have natural oysters. But I love them! Thanks to the crew at Morgans for officially serving me my last six natural Pacific oysters. They were exquisite.
I cannot have uncooked salami. But I love it! Thanks to the guys at Amici Deli for officially serving me my last uncooked salami roll. It was divine. Will be back there soon for a cooked one.
I cannot enjoy soft cheese. But I love it! Thanks to Kate Schwarz for supplying me with my last slab of soft cheese. It was delightful.
I cannot have a rare steak. But I love it lots! Thanks to the Chermside Tavern for my last rare steak. It was very good indeed.
I cannot eat sashimi. But I love it so much! Thanks to Sono for my last sashimi boat. The little guys just sailed into my tummy.
Worst of all, I can no longer partake in the traditional Lebanese delicacy kibbeh nayeh. It's like a steak tartare, only much better. I will not describe it as to do so would make me want to cry. So sincere thanks to Marilyn and Jacki Trad, and their delivery boy Damien Atkinson, for giving me an enormous plate of this unspeakably wonderful food before I got the transplant. It was magnificent.
I really cannot complain. There are so many things I can have. I can have any of the above if properly cooked. I am alive and armed with another shot at life. That's a pretty good deal.
Until next time,
These restrictions exist because my immune system is now greatly suppressed. Forever. So as clever lawyer boy as I would like to be, the rules are the rules.
I cannot have natural oysters. But I love them! Thanks to the crew at Morgans for officially serving me my last six natural Pacific oysters. They were exquisite.
I cannot have uncooked salami. But I love it! Thanks to the guys at Amici Deli for officially serving me my last uncooked salami roll. It was divine. Will be back there soon for a cooked one.
I cannot enjoy soft cheese. But I love it! Thanks to Kate Schwarz for supplying me with my last slab of soft cheese. It was delightful.
I cannot have a rare steak. But I love it lots! Thanks to the Chermside Tavern for my last rare steak. It was very good indeed.
I cannot eat sashimi. But I love it so much! Thanks to Sono for my last sashimi boat. The little guys just sailed into my tummy.
Worst of all, I can no longer partake in the traditional Lebanese delicacy kibbeh nayeh. It's like a steak tartare, only much better. I will not describe it as to do so would make me want to cry. So sincere thanks to Marilyn and Jacki Trad, and their delivery boy Damien Atkinson, for giving me an enormous plate of this unspeakably wonderful food before I got the transplant. It was magnificent.
I really cannot complain. There are so many things I can have. I can have any of the above if properly cooked. I am alive and armed with another shot at life. That's a pretty good deal.
Until next time,
A good heart these days is hard to find
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,
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,
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,
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