Good day all,
As mentioned last time, I had an appointment with an Orthopedic Surgeon at Prince Charles Hospital today as I was concerned that I was still experiencing considerable pain in my left hip yet it is nearly seven weeks since the total hip replacement surgery. Others I know are walking around without an aid after this time.
After a thorough examination and x-ray, it seems there is nothing abnormal. It is just taking a little longer for the wound to heal properly and for stiffness to ease. I need to be more patient.
Saw an x-ray picture of my "new" hip for the first time. Fascinating and quite amazing that such a small ball and socket can support my weight without snapping (at least I hope it can). Could also see the wires which attach the muscle back to the bone post surgery. When you see the amount of original bone which has been cut out, it really makes one marvel at medical technology and the skill levels of the modern surgeon.
I did discover that my left leg appears to be very slightly shorter than the right but it shouldn't present a problem. Hopefully when the muscle in the left thigh returns to normal it might rectify itself. Also discovered that, in Queensland at least, it is an offence to drive a motor vehicle for the first three months after hip replacement. Not only would my insurance company be able to avoid any claim in that time but I wouldn't be covered by third party insurance and in the event of causing injury to others, could be sued for up to $6,000,000. OUCH!
Looks like 7th December before I can get back behind the wheel. (Hope I haven't forgotten how to drive by then). In the meantime my chauffeur's (Janyne's) driving skills have improved dramatically with all the running around she does for me. I am truly a lucky man.
Replies to my Lung Transplantee Association questionnaire are coming in with very positive comments. I'm looking forward to the next few weeks as this idea progresses towards reality.
Talk again soon,
Take care,
Ben
Wednesday, October 25, 2006
Tuesday, October 24, 2006
Must be the drugs!
Good evening all,
Had my visit to the outpatients clinic yesterday and everything seems to be OK. Lung function was down a little but still at 102% of expectations so who's worried? Changed the blood pressure tablets so that my legs won't fill up with fluid. Not as much anyway. Reduced prednisolone to 12.5mg per day. No change to other anti-rejection drugs.
Still suffering some pain in the left hip and I thought after six weeks I'd be better than I am. So Dr Hopkins suggested I see my orthopedic surgeon, Dr Scott Crawford, and I'm back there tomorrow. Hopefully I'm just impatient and there's nothing really wrong.
Must admit to not feeling too well today. Don't know what it is but feeling run down and tired. Feel like I'm getting a cold that never manifests itself. Must be the drugs I'm taking. That's one of the problems post lung transplant as many of you will know. The body can react in the most unexpected way to both physical and emotional changes and it is usually a change in the medication we take that starts the ball rolling. As Dr Peter Hopkins once said (well he's probably said it many times) Lung Transplants aren't easy!
A little sad too the poor Glenda who has done so much to support lung transplantees in Queensland, is back in hospital and facing further surgery. I know those of you who know her will join me in wishing her all the very best. Just another reminder that a lung transplant is not a cure but an opportunity to extend one's life. Almost everyone will have further problems in his/her post transplant life, some worse than others. The key is to make the best of the good times and be confident that the bad times will pass and that, with the Queensland Lung Transplant Unit, we have the best health care possible.
Starting to get some early responses to our letter last week concerning the formation of an Association of Lung Transplantees in Queensland; all positive so far. Expect the rest of the week will be busy answering questions and looking over questionnaires. At least we're moving.
Experiencing some resistance to the Water Feature gift as expected. Some in administration at the Prince Charles Hospital simply feel that the new wing can't accommodate it. Anyway, I hope to meet with the hierarchy soon to resolve any issues. I'm not giving up on this.
Rebecca, I hope you're OK.
Cheers for now,
Ben
Had my visit to the outpatients clinic yesterday and everything seems to be OK. Lung function was down a little but still at 102% of expectations so who's worried? Changed the blood pressure tablets so that my legs won't fill up with fluid. Not as much anyway. Reduced prednisolone to 12.5mg per day. No change to other anti-rejection drugs.
Still suffering some pain in the left hip and I thought after six weeks I'd be better than I am. So Dr Hopkins suggested I see my orthopedic surgeon, Dr Scott Crawford, and I'm back there tomorrow. Hopefully I'm just impatient and there's nothing really wrong.
Must admit to not feeling too well today. Don't know what it is but feeling run down and tired. Feel like I'm getting a cold that never manifests itself. Must be the drugs I'm taking. That's one of the problems post lung transplant as many of you will know. The body can react in the most unexpected way to both physical and emotional changes and it is usually a change in the medication we take that starts the ball rolling. As Dr Peter Hopkins once said (well he's probably said it many times) Lung Transplants aren't easy!
A little sad too the poor Glenda who has done so much to support lung transplantees in Queensland, is back in hospital and facing further surgery. I know those of you who know her will join me in wishing her all the very best. Just another reminder that a lung transplant is not a cure but an opportunity to extend one's life. Almost everyone will have further problems in his/her post transplant life, some worse than others. The key is to make the best of the good times and be confident that the bad times will pass and that, with the Queensland Lung Transplant Unit, we have the best health care possible.
Starting to get some early responses to our letter last week concerning the formation of an Association of Lung Transplantees in Queensland; all positive so far. Expect the rest of the week will be busy answering questions and looking over questionnaires. At least we're moving.
Experiencing some resistance to the Water Feature gift as expected. Some in administration at the Prince Charles Hospital simply feel that the new wing can't accommodate it. Anyway, I hope to meet with the hierarchy soon to resolve any issues. I'm not giving up on this.
Rebecca, I hope you're OK.
Cheers for now,
Ben
Thursday, October 19, 2006
What's new?
Yes I know it's more than a week since I updated this but I keep hoping to have something interesting to write about and here it is, Thursday 19th October, and I'm still struggling. No more severe chest pains, no hospital visits, haven't been anywhere except to the shops, no driving (for another 6 weeks or so), hip's getting better every day (practicing without a walking aid as much as possible), still not sleeping well at night. Boring isn't it?
What about next week? Well I am back to the hospital for normal checks on Monday and then the doctors will decide if I should have a reflux test to see if this is the chest pain culprit. Barring that, I am hoping we can extend these clinic visits to monthly rather than fortnightly. That way Janyne and I can plan a time to get away for a holiday which we both need. We'll see.
One good thing is that, tomorrow, we are finally sending out "expression of interest" forms to all those lung transplantees currently being looked after by the Prince Charles Hospital Lung Transplant Unit. The aim is to gather support for a more formalised association and use it to provide support and fund raising services for all matters relating to lung transplant. I am looking forward to getting the responses in the next few weeks and getting the ball rolling.
Another good thing is that I purchased a new Laptop this week. It's a HP Pavillion with all the required goodies. It's very fast and I'm very happy with it. Paul set it all up for me. The only problem with it is re-loading all the software and remembering to transfer important files. I think we managed that but I do have a confession to make.
I enjoy playing a computer game called "Jewel Quest" and was up to level 2, sector 5.6. Naturally, when re-loading the game on the new computer, it didn't save my game at that level (probably something I did wrong) and I have had to start again from scratch. Accordingly much of the week has been involved in catching up, much to Janyne's annoyance (she can't stand my playing this game and claims I'm addicted. Mind you if I spent time reading, doing crosswords, or even knitting, she wouldn't say a word. There appears to be an issue with females about men sitting in front of a computer for long periods at a time. I am sure many of you can relate to that!!!). Anyway, it is one of the few things I enjoy doing during a time of limited mobility. In a few months I'll be back working somewhere so let it be. By the way, I'm back up to sector 5.4.
Well folks, I'll write again after Monday's visit to the hospital and will also keep you abreast of results of our mailouts. Until then take care. (Rebecca, haven't heard from you recently. Hope all is well).
Ben
What about next week? Well I am back to the hospital for normal checks on Monday and then the doctors will decide if I should have a reflux test to see if this is the chest pain culprit. Barring that, I am hoping we can extend these clinic visits to monthly rather than fortnightly. That way Janyne and I can plan a time to get away for a holiday which we both need. We'll see.
One good thing is that, tomorrow, we are finally sending out "expression of interest" forms to all those lung transplantees currently being looked after by the Prince Charles Hospital Lung Transplant Unit. The aim is to gather support for a more formalised association and use it to provide support and fund raising services for all matters relating to lung transplant. I am looking forward to getting the responses in the next few weeks and getting the ball rolling.
Another good thing is that I purchased a new Laptop this week. It's a HP Pavillion with all the required goodies. It's very fast and I'm very happy with it. Paul set it all up for me. The only problem with it is re-loading all the software and remembering to transfer important files. I think we managed that but I do have a confession to make.
I enjoy playing a computer game called "Jewel Quest" and was up to level 2, sector 5.6. Naturally, when re-loading the game on the new computer, it didn't save my game at that level (probably something I did wrong) and I have had to start again from scratch. Accordingly much of the week has been involved in catching up, much to Janyne's annoyance (she can't stand my playing this game and claims I'm addicted. Mind you if I spent time reading, doing crosswords, or even knitting, she wouldn't say a word. There appears to be an issue with females about men sitting in front of a computer for long periods at a time. I am sure many of you can relate to that!!!). Anyway, it is one of the few things I enjoy doing during a time of limited mobility. In a few months I'll be back working somewhere so let it be. By the way, I'm back up to sector 5.4.
Well folks, I'll write again after Monday's visit to the hospital and will also keep you abreast of results of our mailouts. Until then take care. (Rebecca, haven't heard from you recently. Hope all is well).
Ben
Tuesday, October 10, 2006
Picture of Health?
Good afternoon everyone.
Just to finalise this chest pain problem I have been having, an abdominal ultrasound yesterday appears to show the gall bladder in good shape and no sign of swelling or gall stones (sorry Phil).
So we now have to see if reflux is the culprit. I'll be having tests for that in the next few weeks. If it's not that, then I don't know what it can be. Had another very mild attack last night.
The good thing about this process of elimination is that increasingly I am finding out how healthy I am. Good heart and arteries, good lungs, good kidney function, good gall bladder etc. Another month or two and the hip will have recovered sufficiently for me to be running around the place.
On another matter, I have finally drafted a letter seeking expressions of interest from Lung Transplant recipients, to develop a more formal association of members with a committee, constitution, etc. I hope these will be sent this week and questionnaires returned by mid November so we can start organising some meetings and get things underway.
Until next time,
Take care,
Ben
Just to finalise this chest pain problem I have been having, an abdominal ultrasound yesterday appears to show the gall bladder in good shape and no sign of swelling or gall stones (sorry Phil).
So we now have to see if reflux is the culprit. I'll be having tests for that in the next few weeks. If it's not that, then I don't know what it can be. Had another very mild attack last night.
The good thing about this process of elimination is that increasingly I am finding out how healthy I am. Good heart and arteries, good lungs, good kidney function, good gall bladder etc. Another month or two and the hip will have recovered sufficiently for me to be running around the place.
On another matter, I have finally drafted a letter seeking expressions of interest from Lung Transplant recipients, to develop a more formal association of members with a committee, constitution, etc. I hope these will be sent this week and questionnaires returned by mid November so we can start organising some meetings and get things underway.
Until next time,
Take care,
Ben
Saturday, October 07, 2006
Got to admit it's getting better.
Good evening all,
Had a great day today.
Janyne and I decided we'd "have a day off" and just relax. Ended up hopping onto the golf buggy and looking at all the new developments around the resort. Our economy must be in great shape because the housing/unit development business is booming at Hope Island.
Had a couple of wines at the Clubhouse and sauntered back to Suzanne's house to visit Patch (our part time dog). Janyne's now cooking dinner (roast beef I believe) and Jacqui and Andrew have just arrived to stay for the night.
Now, let's get back to the Gold Coast Hospital.
As mentioned yesterday, after two episodes of chest pain on Sunday 1st October, I contacted Dr Peter Hopkins at the Lung Transplant Unit at Prince Charles Hospital, who suggested we go to the Gold Coast Hospital. He had pre-warned the medical team there and, on arrival, I was immediately taken through to the emergency ward and received a number of tests all under the direction of a Dr "Steve" who was simply first class in his handling of the situation.
Unfortunately, his shift ended at 7.00pm.
Prior to his departure, he told me that he had discussed the test results with Peter Hopkins and both agreed that I should stay overnight to undergo further tests in the morning. "Steve" assured me that the ward registrar would visit me before 9.30 pm and "admit" me to a ward overnight. I enquired about some food but being a Coeliac (gluten/wheat intolerance), this proved to be difficult. By 10.45 pm, still awaiting a visit from the registrar and admittance to a ward, I was advised some food in the form of jelly and custard had been found in the children's ward and they were getting it for me.
In that period from about 4.30 pm to around 11.00 pm I saw some amazing sights. From a beautifully groomed older lady in pajamas and dressing gown who was genuinely suffering from chest pains, to injured drunks celebrating the Broncos Grand Final win, to drug affected foul mouthed young women blaming everyone else in the world for their troubles except themselves, to overly anxious parents concerned about their infant's cough.
How the staff managed this chaos is beyond me. Security guards had to remove one irate visitor to an inebriated patient, who was swearing about it taking too long to fill out some paperwork.
Anyway, my jelly and custard arrived around 1.00am, no registrar arrived to admit me to a ward, the chaos continued and by 2.00pm I'd had enough and decided to go home.
Now I am not complaining about my treatment. It was excellent. And I'm not complaining about the staff. They were brilliant given the difficult conditions under which they had to work.
I am blaming the patients.
For too many years now, governments have been keen to offer "FREE" medical treatment to everyone. It's a vote winner and I have always been of the view that politicians exist for the sole purpose of being re-elected (yes I know there are some genuine exceptions, but not too many).
First it was Medicare, but medical practitioners' costs went up at a rate faster than the increase in the Medicare payment and a "gap" started to be charged by GPs. However, if one went along to the local hospital or to some of the local after hours medical centres, only the Medicare payment would be charged.
The result is that our emergency hospitals are grossly overloaded with people who simply want free health care often at the expense of those in genuine need.
WHY?
Every new major road in Australia, every new tunnel, every bridge now appears to attract a toll. We have GST, numerous levies (it's not a tax!) and now due to widespread drought we're told we'll be paying more for water. This is in addition to personal taxes, company taxes, numerous State and Federal indirect taxes etc.
In other words, we pay for, and expect to pay for, every imaginable service; except Health.
WHY?
Of course the answer is, "Well, we pay 1.5% Medicare levy and that should be enough".
IT'S NOT. Nor would any amount of Medicare levy be enough. It is just another indirect tax. It doesn't hurt. And not all of us pay it do we?
The problem is that many of those who seek "free" medical treatment don't pay the levy because they're not working or have an income below the Medicare levy threshold. They rely on the rest of us to pay for their Health services.
The solution to the overcrowding of our health system and the chaos it brings, is to charge everyone, say, $20.00, for a visit to a doctor, a visit to hospital, an ambulance call or whatever. That's $20.00 in addition to the Medicare payment.
Whether employed, un-employed, retired, pensioner, health card recipient or whatever, we can find money for pizzas and hamburgers, for poker machines, for TAB bets, for alcohol, for illicit drugs, for cigarettes etc. Don't tell me we couldn't find just a lousy $20.00 for medical care if we genuinely needed it.
OF COURSE WE CAN!
If a government of any political persuasion had the guts to introduce such a fee, despite my lack of research in this area, I believe we would halve the number of people simply attending emergency services for minor issues, Hospitals would be able to properly do the things they are there to do, GPs would have less stress and the whole Health system would improve dramatically as would staff morale amongst Emergency Health medical professionals.
But it won't happen will it? It's not a vote catcher.
Or can it be done? If enough of you reading this stuff got behind the concept, I am sure we could persuade those in power to re-think this whole area of free medical treatment for all. In the end, we'd all, even the bludgers in our society, benefit with a far more efficient, more friendly, more capable GENUINE Health Service.
I'd welcome your thoughts.
Goodnight all,
Ben
Had a great day today.
Janyne and I decided we'd "have a day off" and just relax. Ended up hopping onto the golf buggy and looking at all the new developments around the resort. Our economy must be in great shape because the housing/unit development business is booming at Hope Island.
Had a couple of wines at the Clubhouse and sauntered back to Suzanne's house to visit Patch (our part time dog). Janyne's now cooking dinner (roast beef I believe) and Jacqui and Andrew have just arrived to stay for the night.
Now, let's get back to the Gold Coast Hospital.
As mentioned yesterday, after two episodes of chest pain on Sunday 1st October, I contacted Dr Peter Hopkins at the Lung Transplant Unit at Prince Charles Hospital, who suggested we go to the Gold Coast Hospital. He had pre-warned the medical team there and, on arrival, I was immediately taken through to the emergency ward and received a number of tests all under the direction of a Dr "Steve" who was simply first class in his handling of the situation.
Unfortunately, his shift ended at 7.00pm.
Prior to his departure, he told me that he had discussed the test results with Peter Hopkins and both agreed that I should stay overnight to undergo further tests in the morning. "Steve" assured me that the ward registrar would visit me before 9.30 pm and "admit" me to a ward overnight. I enquired about some food but being a Coeliac (gluten/wheat intolerance), this proved to be difficult. By 10.45 pm, still awaiting a visit from the registrar and admittance to a ward, I was advised some food in the form of jelly and custard had been found in the children's ward and they were getting it for me.
In that period from about 4.30 pm to around 11.00 pm I saw some amazing sights. From a beautifully groomed older lady in pajamas and dressing gown who was genuinely suffering from chest pains, to injured drunks celebrating the Broncos Grand Final win, to drug affected foul mouthed young women blaming everyone else in the world for their troubles except themselves, to overly anxious parents concerned about their infant's cough.
How the staff managed this chaos is beyond me. Security guards had to remove one irate visitor to an inebriated patient, who was swearing about it taking too long to fill out some paperwork.
Anyway, my jelly and custard arrived around 1.00am, no registrar arrived to admit me to a ward, the chaos continued and by 2.00pm I'd had enough and decided to go home.
Now I am not complaining about my treatment. It was excellent. And I'm not complaining about the staff. They were brilliant given the difficult conditions under which they had to work.
I am blaming the patients.
For too many years now, governments have been keen to offer "FREE" medical treatment to everyone. It's a vote winner and I have always been of the view that politicians exist for the sole purpose of being re-elected (yes I know there are some genuine exceptions, but not too many).
First it was Medicare, but medical practitioners' costs went up at a rate faster than the increase in the Medicare payment and a "gap" started to be charged by GPs. However, if one went along to the local hospital or to some of the local after hours medical centres, only the Medicare payment would be charged.
The result is that our emergency hospitals are grossly overloaded with people who simply want free health care often at the expense of those in genuine need.
WHY?
Every new major road in Australia, every new tunnel, every bridge now appears to attract a toll. We have GST, numerous levies (it's not a tax!) and now due to widespread drought we're told we'll be paying more for water. This is in addition to personal taxes, company taxes, numerous State and Federal indirect taxes etc.
In other words, we pay for, and expect to pay for, every imaginable service; except Health.
WHY?
Of course the answer is, "Well, we pay 1.5% Medicare levy and that should be enough".
IT'S NOT. Nor would any amount of Medicare levy be enough. It is just another indirect tax. It doesn't hurt. And not all of us pay it do we?
The problem is that many of those who seek "free" medical treatment don't pay the levy because they're not working or have an income below the Medicare levy threshold. They rely on the rest of us to pay for their Health services.
The solution to the overcrowding of our health system and the chaos it brings, is to charge everyone, say, $20.00, for a visit to a doctor, a visit to hospital, an ambulance call or whatever. That's $20.00 in addition to the Medicare payment.
Whether employed, un-employed, retired, pensioner, health card recipient or whatever, we can find money for pizzas and hamburgers, for poker machines, for TAB bets, for alcohol, for illicit drugs, for cigarettes etc. Don't tell me we couldn't find just a lousy $20.00 for medical care if we genuinely needed it.
OF COURSE WE CAN!
If a government of any political persuasion had the guts to introduce such a fee, despite my lack of research in this area, I believe we would halve the number of people simply attending emergency services for minor issues, Hospitals would be able to properly do the things they are there to do, GPs would have less stress and the whole Health system would improve dramatically as would staff morale amongst Emergency Health medical professionals.
But it won't happen will it? It's not a vote catcher.
Or can it be done? If enough of you reading this stuff got behind the concept, I am sure we could persuade those in power to re-think this whole area of free medical treatment for all. In the end, we'd all, even the bludgers in our society, benefit with a far more efficient, more friendly, more capable GENUINE Health Service.
I'd welcome your thoughts.
Goodnight all,
Ben
Friday, October 06, 2006
Thank God It's Friday
Hi everyone,
As you know, this time last week I was on top of the world and just a few days later it all changed again. On a couple of occasions in the past couple of weeks I had experienced chest pains but put it down to indigestion. However, on Sunday, 1st October, I had two quite severe episodes, one sometime after breakfast and the other about an hour after lunch, each lasting about 25 minutes.
Paul happened by during the second attack and, fearing heart problems, I asked him to contact Prince Charles Hospital. Fortunately Dr Peter Hopkins was on duty and he suggested I go to the Gold Coast Hospital. So I phoned Janyne, who had taken the golf buggy to the supermarket, and home she came to again take me off to hospital (and she thought she was over those calls).
Peter had phoned ahead and I was immediately admitted into emergency and a host of tests were performed. Had a magnificent doctor "Steve" looking after me and whilst I can't complain about the service, the Gold Coast Hospital needs some major attention. I'll talk more about that later.
Anyway, I checked myself out deciding I'd rather go back to the excellent care at Prince Charles. Poor Janyne gets woken up at 2.00 am to pick me up. A few hours sleep and I phoned Prince Charles Hospital only to be told to come in. Here we go again, back to my second home.
Anyway, an ECG showed some irregularities so a huge number of tests were done over the next four days including a CT Scan, Angiogram, Ultrasound, Endoscopy, numerous blood tests etc. They really are thorough at Prince Charles and I am in awe at the care and attention they showed.
To cut a long story short, my cardiovascular system and lungs are in great condition so they are not the cause of these chest pains which I continued to experience a couple of times whilst in hospital. So essentially that leaves either reflux or gall bladder as the probable cause and I am having an abdominal scan on Monday to see what the gall bladder looks like. If that's not the answer, then I will undergo a reflux test which involves putting a tube down the oesophogus for 24 hours and seeing what it collects. (Reflux can be a problem as food gets into the lungs and this can cause infection). It's a simple procedure (apparently) and will determine whether reflux is the culprit (even though the endoscopy produced a negative result).
Anyway, after a magnificent lunch at Baguettes in Racecourse Rd. Ascot (sounds good doesn't it? It was!!! Mind you I had four salads in four days and lost 5 kilos so I needed a big lunch), I came home today given my condition is not life threatening and hope to be back in a couple of weeks for a normal clinic session barring any urgent treatment needed in the meantime.
This is one problem that every lung transplantee experiences. The uncertainty of the future. It's a huge emotional burden which both the transplantee and his/her partner, loved one, carer or whoever has to live with. At anytime things can go wrong due either to complications with the new lungs but more commonly to reactions to the very medications designed to keep one alive. Two of my fellow transplantees coincidentally are experiencing problems at this very moment. One has a cyst on a kidney and an enlarged gall bladder and the other has an abcess on the bowel which could be life threatening. For both it is over four years since tranplant.
As Dr Peter Hopkins said the other day, lung transplants aren't easy.
To be honest, it is hard to be positive at times and both Janyne and I need a break from it all. Hopefully we can have a bit of a holiday soon and just relax. The good news of course is that my main organs are in great condition which I wouldn't have known but for these tests so there is a bonus in every situation. Don't worry, we'll feel better and more positive tomorrow.
Anyway, with the week stuffed, I haven't been able to do anything further about establishing that transplantee group I've spoken about before. I know a week is nothing in the whole scheme of things but to someone who has been given a second life, it's a week lost and that's not good. I simply didn't have the emotional will to do anything else until I'd ruled out serious illness. Hey, I'm human after all.
However, verbal response to date from transplantees has been very positive. I'll get onto it next week.
Received an email this week from Jean in Perth, Western Australia, who stated that a lung transplant group was established there about 18 months ago. Jean, please email me again (benbrian@iprimus.com.au) including your email address. When anyone responds to my postings as per the comments option below, your email is shown at my end as anonymous and I cannot respond as I don't have an address to respond to. So all of you out there, please send me your email address if you want me to contact you and keep in touch. Rebecca, still thinking of you and hope things are OK.
It is a bit late so I'm off to bed but I'll give you my Gold Coast Hospital story tomorrow. I am sure it will make interesting reading. In the meantime take care.
Kind regards,
Ben
As you know, this time last week I was on top of the world and just a few days later it all changed again. On a couple of occasions in the past couple of weeks I had experienced chest pains but put it down to indigestion. However, on Sunday, 1st October, I had two quite severe episodes, one sometime after breakfast and the other about an hour after lunch, each lasting about 25 minutes.
Paul happened by during the second attack and, fearing heart problems, I asked him to contact Prince Charles Hospital. Fortunately Dr Peter Hopkins was on duty and he suggested I go to the Gold Coast Hospital. So I phoned Janyne, who had taken the golf buggy to the supermarket, and home she came to again take me off to hospital (and she thought she was over those calls).
Peter had phoned ahead and I was immediately admitted into emergency and a host of tests were performed. Had a magnificent doctor "Steve" looking after me and whilst I can't complain about the service, the Gold Coast Hospital needs some major attention. I'll talk more about that later.
Anyway, I checked myself out deciding I'd rather go back to the excellent care at Prince Charles. Poor Janyne gets woken up at 2.00 am to pick me up. A few hours sleep and I phoned Prince Charles Hospital only to be told to come in. Here we go again, back to my second home.
Anyway, an ECG showed some irregularities so a huge number of tests were done over the next four days including a CT Scan, Angiogram, Ultrasound, Endoscopy, numerous blood tests etc. They really are thorough at Prince Charles and I am in awe at the care and attention they showed.
To cut a long story short, my cardiovascular system and lungs are in great condition so they are not the cause of these chest pains which I continued to experience a couple of times whilst in hospital. So essentially that leaves either reflux or gall bladder as the probable cause and I am having an abdominal scan on Monday to see what the gall bladder looks like. If that's not the answer, then I will undergo a reflux test which involves putting a tube down the oesophogus for 24 hours and seeing what it collects. (Reflux can be a problem as food gets into the lungs and this can cause infection). It's a simple procedure (apparently) and will determine whether reflux is the culprit (even though the endoscopy produced a negative result).
Anyway, after a magnificent lunch at Baguettes in Racecourse Rd. Ascot (sounds good doesn't it? It was!!! Mind you I had four salads in four days and lost 5 kilos so I needed a big lunch), I came home today given my condition is not life threatening and hope to be back in a couple of weeks for a normal clinic session barring any urgent treatment needed in the meantime.
This is one problem that every lung transplantee experiences. The uncertainty of the future. It's a huge emotional burden which both the transplantee and his/her partner, loved one, carer or whoever has to live with. At anytime things can go wrong due either to complications with the new lungs but more commonly to reactions to the very medications designed to keep one alive. Two of my fellow transplantees coincidentally are experiencing problems at this very moment. One has a cyst on a kidney and an enlarged gall bladder and the other has an abcess on the bowel which could be life threatening. For both it is over four years since tranplant.
As Dr Peter Hopkins said the other day, lung transplants aren't easy.
To be honest, it is hard to be positive at times and both Janyne and I need a break from it all. Hopefully we can have a bit of a holiday soon and just relax. The good news of course is that my main organs are in great condition which I wouldn't have known but for these tests so there is a bonus in every situation. Don't worry, we'll feel better and more positive tomorrow.
Anyway, with the week stuffed, I haven't been able to do anything further about establishing that transplantee group I've spoken about before. I know a week is nothing in the whole scheme of things but to someone who has been given a second life, it's a week lost and that's not good. I simply didn't have the emotional will to do anything else until I'd ruled out serious illness. Hey, I'm human after all.
However, verbal response to date from transplantees has been very positive. I'll get onto it next week.
Received an email this week from Jean in Perth, Western Australia, who stated that a lung transplant group was established there about 18 months ago. Jean, please email me again (benbrian@iprimus.com.au) including your email address. When anyone responds to my postings as per the comments option below, your email is shown at my end as anonymous and I cannot respond as I don't have an address to respond to. So all of you out there, please send me your email address if you want me to contact you and keep in touch. Rebecca, still thinking of you and hope things are OK.
It is a bit late so I'm off to bed but I'll give you my Gold Coast Hospital story tomorrow. I am sure it will make interesting reading. In the meantime take care.
Kind regards,
Ben
Thursday, September 28, 2006
What a great week. And it's only Thursday
Hello everyone,
It's been a great week since coming home from hospital last Saturday. My rejection period appears to be over. Today, clinical tests at Prince Charles Hospital produced the best lung function test yet with an FEV1 value of 3.46. I have had readings of 3.5+ on my home machine but never this high with the hospital's more sophisticated machinery. (FEV1 = (forced expired volume in one second) is the volume expired in the first second of maximal expiration after a maximal inspiration and is a useful measure of how quickly full lungs can be emptied). . Many of you wouldn't blow these numbers.
X-Rays show up lungs in very good condition and all my vitals including kidneys, of some concern last week, are working normally. This is all very gratifying.
Oh, by the way, my left hip is getting better everyday since replacement surgery three weeks ago. So well I'd almost forgotten about it.
To top things off, my older brother Rob and his wife Maureen, who live in Sydney, accompanied by my (also older) sister Marian who was holidaying with them from Melbourne, came over for dinner on Tuesday night. They decided to pop up to Queensland for a bit of a holiday and to see how I was doing. We had a great night and Janyne cooked a magnificent meal as usual. Paul, Jacqui, Jason and his girlfriend Kym were also there so it was a big happy family event.
Sister Marian and brother Rob with yours truly. Yes I had a glass of wine. Just don't tell Dr Peter Hopkins.
From the left, sister Marian, Janyne, brother Rob and his wife Maureen and yours truly.
Yesterday the interstate visitors were due to come back and spend the afternoon with us. Janyne was going to take them for a tour around Hope Island Resort on our golf buggy but the weather set in so they ended up visiting for a couple of hours. This time my younger sister, Theresa, and her daughter, Leah, who I haven't seen for years, accompanied them. They live in nearby Currumbin. Naturally there was a lot of chatting about old times and I thoroughly enjoyed myself.
They all head off home to Sydney (and Melbourne) tomorrow but I am sure we'll see more of each other in future. Have to admit I have never been very close to my extended family but I guess major health events such as lung transplants do make us realise the importance of family ( blood thicker than water and all that stuff). We won't be living in each other's pockets but more regular contact will be fun.
Today we also started the ball rolling with the establishment of a more formal organisation representing lung transplantees, principally in the areas of research about what organisations and activities already exist at The Prince Charles Hospital to ensure that we are not re-inventing the wheel. Janyne and I came away from these discussions with the view that proceeding would be very worthwhile for both current and prospective Lung Transplantees and their close relatives as well as providing support to the transplant medical team where required. We have names of other members who may be interested in being involved in the establishment period and I will be seeking meetings and discussions with them over the next couple of weeks.
We'll keep you informed of progress but if anyone has any ideas I'd welcome them. Just hit the "comments" button below and email me your thoughts.
Tomorrow, we start getting the water feature underway. Everything is ready to go as far as the physical feature is concerned but I am sure there'll be some hurdles with Hospital administration in relation to its position and installation. I don't want this thing tucked into a far corner of the hospital grounds where no one will see it and therefore no one will make a wish and help us raise funds. However, we have some good support amongst hospital staff and even the Health Minister for Queensland, Mr Stephen Robertson, was very supportive at the presentation last Friday, so I'm sure we'll get the job done.
I have waffled on for long enough now so I'll say goodbye. I'll talk again soon.
Ben
Some photos of our newly clipped "god dog" patch and his "mother" Suzanne to leave you with. (He's cute and we can give him back after a nice day's doggysitting)
It's been a great week since coming home from hospital last Saturday. My rejection period appears to be over. Today, clinical tests at Prince Charles Hospital produced the best lung function test yet with an FEV1 value of 3.46. I have had readings of 3.5+ on my home machine but never this high with the hospital's more sophisticated machinery. (FEV1 = (forced expired volume in one second) is the volume expired in the first second of maximal expiration after a maximal inspiration and is a useful measure of how quickly full lungs can be emptied). . Many of you wouldn't blow these numbers.
X-Rays show up lungs in very good condition and all my vitals including kidneys, of some concern last week, are working normally. This is all very gratifying.
Oh, by the way, my left hip is getting better everyday since replacement surgery three weeks ago. So well I'd almost forgotten about it.
To top things off, my older brother Rob and his wife Maureen, who live in Sydney, accompanied by my (also older) sister Marian who was holidaying with them from Melbourne, came over for dinner on Tuesday night. They decided to pop up to Queensland for a bit of a holiday and to see how I was doing. We had a great night and Janyne cooked a magnificent meal as usual. Paul, Jacqui, Jason and his girlfriend Kym were also there so it was a big happy family event.
Sister Marian and brother Rob with yours truly. Yes I had a glass of wine. Just don't tell Dr Peter Hopkins.
From the left, sister Marian, Janyne, brother Rob and his wife Maureen and yours truly.
Yesterday the interstate visitors were due to come back and spend the afternoon with us. Janyne was going to take them for a tour around Hope Island Resort on our golf buggy but the weather set in so they ended up visiting for a couple of hours. This time my younger sister, Theresa, and her daughter, Leah, who I haven't seen for years, accompanied them. They live in nearby Currumbin. Naturally there was a lot of chatting about old times and I thoroughly enjoyed myself.
They all head off home to Sydney (and Melbourne) tomorrow but I am sure we'll see more of each other in future. Have to admit I have never been very close to my extended family but I guess major health events such as lung transplants do make us realise the importance of family ( blood thicker than water and all that stuff). We won't be living in each other's pockets but more regular contact will be fun.
Today we also started the ball rolling with the establishment of a more formal organisation representing lung transplantees, principally in the areas of research about what organisations and activities already exist at The Prince Charles Hospital to ensure that we are not re-inventing the wheel. Janyne and I came away from these discussions with the view that proceeding would be very worthwhile for both current and prospective Lung Transplantees and their close relatives as well as providing support to the transplant medical team where required. We have names of other members who may be interested in being involved in the establishment period and I will be seeking meetings and discussions with them over the next couple of weeks.
We'll keep you informed of progress but if anyone has any ideas I'd welcome them. Just hit the "comments" button below and email me your thoughts.
Tomorrow, we start getting the water feature underway. Everything is ready to go as far as the physical feature is concerned but I am sure there'll be some hurdles with Hospital administration in relation to its position and installation. I don't want this thing tucked into a far corner of the hospital grounds where no one will see it and therefore no one will make a wish and help us raise funds. However, we have some good support amongst hospital staff and even the Health Minister for Queensland, Mr Stephen Robertson, was very supportive at the presentation last Friday, so I'm sure we'll get the job done.
I have waffled on for long enough now so I'll say goodbye. I'll talk again soon.
Ben
Some photos of our newly clipped "god dog" patch and his "mother" Suzanne to leave you with. (He's cute and we can give him back after a nice day's doggysitting)
Sunday, September 24, 2006
Home again after a big week
It is amazing how fragile we transplantees can be. A small mistake with medication post hip replacement, and suddenly my body starts the lung rejection process. Quick action by the wonderful transplant team at Prince Charles Hospital and here I am home again on the way back to normal. It'll take a few days still but vital statistics look good.
It was an eventful week with Friday being the tenth anniversary of the Prince Charles Hospital Queensland Lung Transplant Unit. As I was now an inpatient, I joined the celebrations at the hospital with a morning tea attended by over 100 people including present and past members of the Queensland transplant unit as well as a large number of transplantees and their families. The State Minister for Health, the Honorable Mr Stephen Robertson, also attended and I think he was both surprised and impressed with the order of events and the camaraderie that exists between medical staff and patients. It is very much a big family.
I was honored to be asked to make the presentation of the gift from transplantees and from some of their families whose donations were gratefully acknowledged. In all some $3,000 was raised, an amazing result considering there are only some 60 - 70 transplantees still living since transplants began in Queensland (out of about 110 operations). This should cover both the cost of the fountain and installation. Sincere thanks to Eleanor Kerr, social worker at Prince Charles, fellow transplantees Glenda Murray and Phil Griffiths as well as my wife Janyne and children, Paul and Jacqui, without whom this would not have happened.
Here we have two of the transplant team members, Dr. Fiona Kermeen (left) and Dr Peter Hopkins, both of whom look after me so well, accepting a token of the gift to come. It has a replica of a plaque on the left hand side and a photo of the water fountain on the right. Unfortunately the quality of the photos isn't great but I am sure you get the picture.
Guess who? Not bad for a guy with a crook hip and mild lung rejection ????
The plaque says, "Celebrating The Tenth Anniversary of The Prince Charles Hospital Queensland Lung Transplant Unit Donated with Gratitude by Transplant Recipients, Families and Friends, 22.09.2006".
In my presentation I made reference to my thoughts of creating a more formal group or association made up of existing and prospective lung transplantees and maybe their families and friends with a proper committee and better organisation so that future events of this nature can be more efficiently managed. There is no pre-determined agenda here as this will evolve with time and consensus but some broad aims could be to provide moral and, if possible and appropriate, financial support to past and prospective transplantees and their immediate families, raise funds to assist the transplant team in whatever way is deemed appropriate, create greater awareness of the benefits of being an organ donor, organise some fun tours and events etc (after all, life after transplant should be fun), and generally keep members informed about how to get the best out of their new lives.
Health Minister Stephen Robertson was so impressed by this idea that he approached me after formalities and stated that, if we can put this concept together, he would pledge up to $3,000 in funding, (based on a dollar for every dollar raised for the gift to the transplant team). This level of support is very gratefully appreciated and I will be writing to his office this week accepting his conditional offer on behalf of the transplant recipients and committing to report on progress.
Over the next few days I will be speaking to various hospital staff to gauge their thoughts and ideas as well as to find out what similar groups of this nature already exist. After all, we need to be mindful that we don't re-invent the wheel. We will also get a feedback form to as many current and prospective transplantees as possible to gauge levels of interest, organise some meetings, seek nominations for a committee, draft a mission statement and develop a constitution. If anyone out there has any ideas or comments in this regard, I would welcome them. We want this to be fun and not too formal but at the same time it may pay us to have the association registered as a charity if we're going to look at fund raising down the track so we need some formality involved.
Keep watching this blog site for details. Thanks again in my absence to my son Paul who does a far better job of all this than I do.
It was an eventful week with Friday being the tenth anniversary of the Prince Charles Hospital Queensland Lung Transplant Unit. As I was now an inpatient, I joined the celebrations at the hospital with a morning tea attended by over 100 people including present and past members of the Queensland transplant unit as well as a large number of transplantees and their families. The State Minister for Health, the Honorable Mr Stephen Robertson, also attended and I think he was both surprised and impressed with the order of events and the camaraderie that exists between medical staff and patients. It is very much a big family.
I was honored to be asked to make the presentation of the gift from transplantees and from some of their families whose donations were gratefully acknowledged. In all some $3,000 was raised, an amazing result considering there are only some 60 - 70 transplantees still living since transplants began in Queensland (out of about 110 operations). This should cover both the cost of the fountain and installation. Sincere thanks to Eleanor Kerr, social worker at Prince Charles, fellow transplantees Glenda Murray and Phil Griffiths as well as my wife Janyne and children, Paul and Jacqui, without whom this would not have happened.
Here we have two of the transplant team members, Dr. Fiona Kermeen (left) and Dr Peter Hopkins, both of whom look after me so well, accepting a token of the gift to come. It has a replica of a plaque on the left hand side and a photo of the water fountain on the right. Unfortunately the quality of the photos isn't great but I am sure you get the picture.
Guess who? Not bad for a guy with a crook hip and mild lung rejection ????
The plaque says, "Celebrating The Tenth Anniversary of The Prince Charles Hospital Queensland Lung Transplant Unit Donated with Gratitude by Transplant Recipients, Families and Friends, 22.09.2006".
In my presentation I made reference to my thoughts of creating a more formal group or association made up of existing and prospective lung transplantees and maybe their families and friends with a proper committee and better organisation so that future events of this nature can be more efficiently managed. There is no pre-determined agenda here as this will evolve with time and consensus but some broad aims could be to provide moral and, if possible and appropriate, financial support to past and prospective transplantees and their immediate families, raise funds to assist the transplant team in whatever way is deemed appropriate, create greater awareness of the benefits of being an organ donor, organise some fun tours and events etc (after all, life after transplant should be fun), and generally keep members informed about how to get the best out of their new lives.
Health Minister Stephen Robertson was so impressed by this idea that he approached me after formalities and stated that, if we can put this concept together, he would pledge up to $3,000 in funding, (based on a dollar for every dollar raised for the gift to the transplant team). This level of support is very gratefully appreciated and I will be writing to his office this week accepting his conditional offer on behalf of the transplant recipients and committing to report on progress.
Over the next few days I will be speaking to various hospital staff to gauge their thoughts and ideas as well as to find out what similar groups of this nature already exist. After all, we need to be mindful that we don't re-invent the wheel. We will also get a feedback form to as many current and prospective transplantees as possible to gauge levels of interest, organise some meetings, seek nominations for a committee, draft a mission statement and develop a constitution. If anyone out there has any ideas or comments in this regard, I would welcome them. We want this to be fun and not too formal but at the same time it may pay us to have the association registered as a charity if we're going to look at fund raising down the track so we need some formality involved.
Keep watching this blog site for details. Thanks again in my absence to my son Paul who does a far better job of all this than I do.
Thursday, September 21, 2006
Rejection
What was meant to be a routine checkup has found Ben back in hospital for at least the next three days. The results of a blood test, as well as the lung function test, taken this morning prompted the transplant doctors to perform a bronchoscopy to discover the cause of abnormalities they'd noticed. Later this afternoon the biopsy confirmed what they had feared; there were signs of rejection.
Initially they are unable to tell what caused it. However, they suspect a mixup in medication, which saw Ben taking 100mg of Cyclosporine instead of 200mg, may have been the culprit. Irrespective of how or why the most important thing now is to get him better. How do they plan on doing that?
The next step is to get Ben hooked up to a Prednisone drip. For those of you who don't know, Prednisone is a steroid that is used as an immunosuppressive. In Ben's case it is vital they kill the immune system which is causing his body to fight against the healthy donor lungs (remember, Ben's body naturally sees the donor lungs as a foreign body). The plan is to administer this type of treatment over the next three days; the chance of success is good, around 85%.
The comforting news is that the doctors believe it will be a success. We're all very confident in them and Ben's ability to beat this and it's a nervous, fingers crossed, wait until early next week when we'll know.
I'll keep you informed!
Paul.
Initially they are unable to tell what caused it. However, they suspect a mixup in medication, which saw Ben taking 100mg of Cyclosporine instead of 200mg, may have been the culprit. Irrespective of how or why the most important thing now is to get him better. How do they plan on doing that?
The next step is to get Ben hooked up to a Prednisone drip. For those of you who don't know, Prednisone is a steroid that is used as an immunosuppressive. In Ben's case it is vital they kill the immune system which is causing his body to fight against the healthy donor lungs (remember, Ben's body naturally sees the donor lungs as a foreign body). The plan is to administer this type of treatment over the next three days; the chance of success is good, around 85%.
The comforting news is that the doctors believe it will be a success. We're all very confident in them and Ben's ability to beat this and it's a nervous, fingers crossed, wait until early next week when we'll know.
I'll keep you informed!
Paul.
Wednesday, September 13, 2006
He's Home
A quick post to let you all know that Ben did return home today as expected. The kidney issue turned out to be a something minor that they're going to keep an eye on. Ben should be good to lose the crutches in around six (6) weeks and by the three (3) month stage he'll be as good as new.
It's good to have him home!
It's good to have him home!
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