Wednesday, October 25, 2006

Sore hip? What sore Hip?

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

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

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

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

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

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