Rebuilding the Man

For those of you who didn't know, Ben's back in hospital this week undergoing a hip replacement. I (Paul) will be taking over the reigns, filling you in on how he's progressing for the short period until he gets back. He's been through a lot lately, first receiving the lung transplant and now the hip replacement. In a few short weeks he'll be a totally new man, hence the title - "Rebuilding the Man".

The operation was scheduled in for 9:30am this morning, Thursday 7th September. However, as we're beginning to learn, nothing ever runs on time in hospitals and the operation was further delayed until 11:30am. After already being apprehensive and quite nervous about the operation, I could only imagine how agonising those two hours could have been. None the less it did take place at 11:30am and an hour and a half later Ben was in recovery after an incident free operation.

When I spoke to Janyne last (around 2pm) Ben had just been wheeled into the ward from recovery. He's currently doing well, on 5L of oxygen and about to be hooked up to the humidifier. He'll be on oxygen for a couple of days and most likely they'll have him up and walking in the morning.

Typically, I sent a barrage of questions down the phone line trying to get every piece of detail I could, so here goes. Ben, like every other hip replacement patient, is on oxygen to ease the pressure put on the lungs. It's common procedure and has nothing to do with the fact he has had a lung transplant. The humidifier is used to keep the lungs moist in order to encourage any flem to be brought up, decreasing the risk of infection. As you may of guessed, fighting infection is one of the top priorities given the fact that Ben has a low immune system (a result of the anti-rejection drugs).

Much to Ben's dislike the anesthetist opted for an epidural over the general anesthetic. In short an epidural requires the patient to be awake and semi-conscious during the operation, not a very pleasant thought considering the nature of the procedure. After only having the lung transplant four months ago, Ben's lungs are still quite fragile. A general anesthetic would have required him to be placed on a ventilator however, due to the amount of pressure (10 times that of your normal breath) and his fragile lungs it really wasn't an option.

It turns out the epidural wasn't quite as bad as he thought it would be (he did threaten once that he wasn't going to have the operation unless it was a general anesthetic). They paralyse you throughout the procedure and as a result there was next to no pain and only slight discomfort at times. In recovery he slowly started to regain feeling/movement in his body parts, all except for his toes which are only just coming back to life now.

In short, it all seems to have gone well. I'll keep you filled in as I hear more. To finish I'll leave you with Ben's comment to you all - “It wasn't as bad as what I thought it would be.”

Paul.

P.S. The phrase “It's never as bad as you think it'll be.” has somewhat been Ben's mantra throughout his life. Whilst facing something we were apprehensive about, it always seemed like a nice reassurance that it'd all end okay and usually it did. Nowadays he has changed it slightly with an addition to the end, “Unless it's a double lung transplant, then it's worse”.

Four months on

Today, 4th September, it is exactly four months since I received my new lungs and I must say that I am still amazed at how well I feel. Given the tragic death today of Crocodile Hunter, Steve Irwin, it just brings home the fact that we can leave this earth at any time regardless of status, age, or creed so we must make the most of every day.

Feeling a tad nervous (make that "very") as I am back in hospital on Wednesday afternoon for hip replacement surgery on Thursday morning. Countless people have assured me that, compared to my lung transplant, this should be a breeze, yet I am feeling more anxious now than when I was being wheeled into the operating theatre for that. I guess I have had more time to think about it. Anyway, I will try to adopt my old adage that "nothing is as bad as it seems" and find myself feeling fighting fit in a few weeks.

Thank you to all who have contributed to the tenth anniversary gift, particularly to the relatives and friends of transplantees (thanks Rob and Liz). We have finally decided to purchase a fountain (read "wishing well" - YES we've gone the full circle). We managed to find a beautiful example and when the retailer found out what it was for, he reduced the price from $3,300 to $2,500. I think we'll exceed this sum by 22nd September so should have enough to cover the cost of a plaque and installation. We hope to place it in the lawns abutting the new wing currently being constructed at Prince Charles Hospital and use "wishing" coins to fund ongoing transplant and organ donor awareness. I'll get some photos to you in the next couple of days.

Rebecca, thanks for your email clarifying your medical condition. I am guessing that you live in the US and I trust medical technology there will find you a drug which will halt the fibrosis and give you and your daughter the opportunity to take that trip to Europe. I think of you often and hope things improve soon.

This is me with our neighbour's new puppy, Patch. He is a great little dog and we love "doggysitting" him when Suzanne goes out but I don't think I am keen to have one of our own as yet. The good thing is we can give him back at the end of the day. However, Janyne still misses Selby terribly so we may revisit this issue when I am fit and well again after surgery.

Time goes by so quickly and I keep forgetting to update this blog as often as I should. Paul will, no doubt, keep you abreast of my progress post hip replacement until I am back on deck in a week or two.

In the meantime, take care.

Ben

It's a small world

I just had to tell you this.

Since I was referred to Dr Peter Hopkins, consulting lung physician at Prince Charles Hospital, back in September last year, there have been quite a number of coincidences involving him. First, his wife Danene is a general practitioner who works at the same surgery as my GP, Dr John Golder, the doctor I have been seeing for 18 years since moving from Melbourne in 1987. Peter and Danene's baby Jessica was originally due on my birthday, 1st June, but arrived via caesarian section on 30th May.

Second, since my surgery on 4th May, Peter has seen my son Paul at the Woolworths Supermarket at Bulimba, a suburb of Brisbane.(Paul didn't recognise him with his street gear on).

Then just a few weeks ago, Peter saw both Jacqui and Melissa, who was visiting from Melbourne, in Oxford street Bulimba but Peter was too embarrassed to say hello as he was in his gardening clothes.

Only yesterday, Paul met a lady on the Esplanade at Labrador on the Gold Coast and through a casual conversation discovered that her husband is a patient of Peter's and is awaiting a lung transplant.

Finally, and this is a true story, Janyne went for her regular bike ride this morning to the Hope Island Golf Clubhouse where she has breakfast with her friend Suzanne. Suzanne had her new puppy with her and some of the golfers came over to have a look. In conversation, it emerged that one of the men was visiting from Sydney to play golf for a few days and it turns out that he is Danene's father, Peter's father-in-law.

Is this an omen or is this Peter's covert way of keeping a watchful eye on my recovery process and making sure I'm behaving myself????

Just for good measure, Dr John Fraser, another consultant at Prince Charles Hospital, has a three year old son. And his name is.......? You guessed it, Benedict John, the same as mine.

Life is full of coincidences.

Bye,

Ben

Back so soon?

We had our two nights at the Sheraton in Noosa, courtesy of Jacqui, on Tuesday and Wednesday of this week. Caught up with George and Wendy from Tassie who were there for the Taxation Institute Conference. Had a great time and the weather was just magnificent. We would love to have stayed longer but holidays will have to wait until some other time.

Received an email from Rebecca who has suspected obliterative bronchiolitis (refer my 9th July post) apparently resulting from her rheumatoid arthritis. I had always thought OB was a common condition following lung transplant and didn't realise it could develop through other medical conditions. I am actually trialing a new drug, everolimus, which it is hoped will prevent or manage this condition. I am one of about 400 transplantees worldwide on this trial program. We won't know for a few years but, if it works, it could mean that, barring complications such as rejection or infection, lung transplantees could go on living for a very long time. Rebecca, thanks for your comment. Perhaps have a chat to your lung physician about this new drug. I wish you well.

We are receiving a very positive response to the fundraising flyer seeking support for a tenth anniversary gift to the Queensland Lung Transplant unit with $400.00 in so far and many promises of more. Considering it's been only a week since the flyer went out, this is very encouraging. Thanks to my brother Rob for his contribution. He felt a donation was better value than buying flowers for me when I was in hospital and I thoroughly agree. Could be food for thought for some of you out there!!!!

I would love to have some feedback in relation to a suitable gift. We hope to have $2,500 to $3,000 to purchase a "thank you" gift to the lung transplant medical team at Prince Charles Hospital. So far a painting or a wishing well has been rejected and it has been suggested that a statue of some sort might be suitable. Can't imagine a "Venus" or "David" achieving the objectives we're seeking however. The theme of the gift should be the giving of life or "new beginnings" and be an inspiration to those involved in the transplant journey be they surgeons and other medical professionals, patients or prospective transplantees and their relatives and friends. If you have any ideas, please let us know by completing the "comments" section below.

Queensland is having a State election on Saturday 9th September. Could we be seeing a new Premier and/or Health Minister at our 10th Anniversary morning tea?

Talk again soon,

Ben

Hip Hop

Good evening all.

Had my regular visit to Prince Charles Hospital today. All results were good but I seem to have a cold which, hopefully, won't develop into anything further. My left hip has been playing up quite badly for a couple of weeks now and Dr Peter Hopkins has finally agreed that the time has come for a hip replacement. The condition is known as Avascular Necrosis, a break down of the bone tissue of the femur (thighbone) and the acetabulum (pelvis) due the long term use of Corticosteroids (prednisolone in my case). Anyway, I was referred to Dr Scott Crawford, Orthopaedic Surgeon, and he has me booked in for hip replacement surgery at Prince Charles on Thursday 7th September.

Yes I know I'll feel better in the long term but I have to admit I'm not really looking forward to surgery again just four months after the lung transplant. However, if I don't have it the whole femur could shatter and I'd be in worse trouble.

The artist Peter J Hill, who painted "Lemon Orchid", (refer 3rd August entry) the painting we hoped to purchase as a tenth anniversary gift to the Queensland Lung Transplant unit, phoned me today. He had just returned from a trip to outback Queensland and said the "Lemon Orchid" had been sold but he'd be happy to paint another similar painting if we're interested. I explained we'd decided to raise some money first and then see what we can buy. Somehow I don't think it will be a painting. Pity, because Peter sounded like a really nice guy (you know he's nearly 70?) and he paints some amazing stuff. Take a look at his website (http://www.pjart.com/index.htm).
By the way, I have no financial interest in Peter's business nor am I on a commission.

Flyers to transplant patients, discussing the tenth anniversary and requesting donations towards a gift, were sent out last Thursday (10th August) so we're hoping we'll get a good response. My son Paul designed the flyer and did a fantastic job. Have a look at it here!

On the bright side, Janyne and I are off to Noosa for a couple of days and catching up with some friends from Melbourne.

Yes, the Porsche Boxter is definitely for sale and is advertised at Carsales.com.au. We've discovered we really only need one car anyway and the money could be better used elsewhere. If you know anyone who may be interested, please send details via the "comments" section of this blog.

Talk again soon.

Bye,

Ben

Change of plans

Back so soon?

Well we've had a mini meeting and decided that we should raise some money first before purchasing an anniversary gift marking ten years since the Queensland Lung Transplant Unit was formed at Prince Charles Hospital in Brisbane. There wasn't much enthusiasm for the painting I showed you in the last update.

We're looking to raise $2,500 to $3,000 which amounts to about $25.00 to $30.00 per transplantee. There is no reason why relatives and friends shouldn't be part of this as they too have benefited from the fact that their loved one is alive due to the efforts of the transplant team. There are also a number of recipients who had surgery interstate but receive ongoing care at Prince Charles.

Glenda Murray is co-coordinating donations. Anyone who'd like to contribute should make cheques or money orders payable to "Lung Transplant Account" and sent to Glenda Murray, 29 Ballinderry Street, Everton Park, Qld 4053.

Until next time.

Ben

Yes, I have been slack.

Yes, I have been slack and not written anything for a couple of weeks. But as tomorrow (4th August) marks three months since transplant, I felt it was about time I stopped being lazy and started writing. I hope some of you out there are still reading!!!!!

I am pleased to say that healthwise nothing has changed. A bronchoscopy and biopsy (tissue samples) yesterday showed no sign of rejection or infection and everything appears fine. Let's hope it stays that way.

There is an important anniversary coming up on 22nd September, the tenth anniversary of the Queensland Lung Transplant Unit. Somehow Janyne and I have involved ourselves in this.

At a recent support group meeting, it was decided that a gift of thanks from lung transplant recipients to mark this occasion, would be appropriate. The theme of such a gift should be an expression of gratitude to the medical professionals who make transplants possible and to the wonderful support staff post transplant who continue to look after us today, not to mention the organ donors without whom most of us would not be here. After much discussion, it was decided that an original work of art depicting the concept of new life or new beginnings might be appropriate together with a plaque expressing our gratitude.

“Lemon Orchid”, a painting of a Western Australian wildflower by Australian and Mt Tamborine artist, Peter J Hill, (http://www.pjart.com/index.htm) has been put forward as a possible contender.



It measures 90cm x 60cm and is beautifully framed. The picture doesn’t do it justice as the colours are quite striking. As fellow transplantee, Phil Griffiths stated, “the stages of opening of the flowers is able to be interpreted as similar to the phases of life a transplant recipient experiences or even the ray of hope for those waiting for transplants.”

Asking price for this original painting is $3,000 but I am meeting with the artist after 8th August in the hope of negotiating a better price. With about 100 transplantees who enjoy a second life and who continue to benefit from ongoing care at Prince Charles Hospital's lung transplant unit, we are seeking donations of $30.00 or less per head. I know that some may find such a donation difficult but perhaps families and friends could also chip in as a way of saying thank you for saving the life of a loved one.

If anyone else out there wants to make a donation, please contact me by email and I will direct them to the appropriate person at Prince Charles Hospital to arrange it.

The anniversary will be marked by a morning tea to be held at the hospital and unveiling of a commemorative plaque, with as many transplantees, current and former staff attending as possible. It is hoped the Premier, Mr Peter Beattie and/or Health Minister Mr Stephen Robertson MP will attend.

Anyway that's all my news for now. Talk again next week.

Ben Brian

On the move

This week saw a visit to Prince Charles Hospital on Monday for blood tests to check on reaction to the new trial drug, everolimus. The result was that I had to reduce the dosage to 1 mg morning and night having started at 1.5 mg. On the way home I visited Tim Davis at Marsh Tincknell (former business colleagues) and what I thought would be a ten minute visit turned into an hour. It was great to catch up. We're looking at the possibility of doing some work together (part time of course).

Also popped in to see Terry Howard at Instant Tax Refunds in Beenleigh. He didn't have too much time as this is the busiest time of the year. Anyway, it was good to get out and talk to people again. The weather was wonderful and I drove home with the roof down, feeling great.

Thursday had my usual weekly check-up at Prince Charles and all results were good. Reducing my Cyclosporin (anti-rejection drug) from 250 mg twice daily to 225 mg. Back again this Thursday and then hopefully down to fortnightly visits. What I do enjoy on these visits is meeting other transplant recipients and comparing notes. Gets a bit like the "old wives club"

Janyne and I continue to ponder the future and have been looking at Caravans thinking travel might be a good idea. We saw some great 'vans but I think we've both come to the conclusion that it was great 20 plus years ago but maybe not for us now. By the time we purchase a van and towing vehicle we're up for $100,000 plus. OK, we'd sell the Porsche to pay for it but with depreciation, fuel costs etc, we'd do just as well staying in motels. I guess we're not in love with the caravanning life enough to make such a big change to our lives. Still thinking of selling the Porsche though, so anyone wanting (or who knows someone who might be) a 2004 Boxter S tiptonic in mint condition, give me a call.

Haven't had too many visitors lately as many friends as well as Paul and Jacqui have colds, something I must avoid. However we continue to communicate by phone and email.

It was good to hear from Donna Burnett (Great Southern Plantations Limited) this week as well as Phil Griffiths, a fellow transplantee who hasn't been too well lately. He had the cheek to suggest we get one of those mechanical dogs so that we wouldn't be tied down. Not quite the same Phil!!!!

Always look forward to any comments or response.

Until next week, take care.

Ben

Better late than never

I'm a bit tardy this week. For some reason I keep feeling it's a day earlier than it really is. Thought we had this week away from the hospital but it was not to be. Some time ago I had agreed to participate in a trial program for a new drug which, it is hoped, will help in the preventon of a condition commonly known as Bronchiolitis Obliterative Syndrome (BOS). This is a type of scarring or fibrosis which affects the very small airways of the transplanted organ in Heart-Lung, Bilateral (Double) Lung and Single Lung Transplant recipients.

BOS remains the largest single cause of death following a lung transplant operation. At present there are no known or effective therapies for the prevention of this condition. Anyway, in order to be randomly selected, I had to go in on Thursday for the usual tests. To cut a long story short, I was selected and am now on the new drug with possible side effects being monitored over the next few weeks. This is the wonderful thing about being given a second chance at life; Medical Science is always finding new drugs or treatments and who knows where that will lead. I could end up living to a ripe old age.

We took the opportunity to visit the Intensive Care Unit where I spent my first 19 days post op. It was like visiting an old home and I felt quite emotional there. Looking at some of the current patients brought back some vivid memories of my own situation just a few weeks ago. Met some of the staff who looked after me, Cathy and Ross being among them. Left them with about two kilograms of chocolates to share as a "thank you". How else can you thank people who've played a big part in saving your life and making you well ?????

Janyne and I are starting to think about what we'll do in the future. As the hospital visits extend to fortnightly and then monthly, we'll have time for travel. It is hard to re-adjust thinking to long term when pre-op, we were planning on my demise within the current calendar year. Life can change so rapidly and so dramatically.

We're still pondering the pros and cons of getting a new dog. We both miss Selby and, whilst he can't be replaced, we do miss the enthusiastic greetings and the wagging tails when we come home after being out. We often think of his personality and talk about the funny things he used to get up to. On the other hand there is the long term responsibility and the "being tied down" that goes with pet ownership. We'll sleep on it a bit longer. Until next week.

Bye

Ben

8 weeks on

It's now eight weeks since transplant and I'm feeling great. Thursday's hospital visit involved two blood tests, a lung function test and x-ray all showing positive results. Miraculously, we were out of there at around 11.00 am (normally mid-afternoon) with my next visit being 10th July so next week is a free week. Popped in to see my long term lung Physician, Dr Glenn Rice-McDonald on Wednesday. His face just beamed when he saw me. It must be rewarding to see a patient you have cared for for four years doing so well after transplant. Also visited my GP of 18 years, Dr John Golder, and he had the same reaction. Couldn't believe how well I looked. Even his staff commented.

Finishing early on Thursday gave us the opportunity to have lunch with our daughter, Jacqui, and we visited her at work in the city. She works for Great Southern Securities, the company to which I was contracted for about 12 years. Those of my ex-colleagues who were there and who last saw my when I was ill and 105 kilos, were amazed at how much weight I had lost (76 kilos at last count) and how well I looked. Most had only seen me after I contracted the lung problem. In fact everywhere I go people are surprised at how well I look and how much happier and more positive I am.

I feel truly blessed and everyday, privately, I thank the organ donor and his/her family for the gift of life I have. I had forgotten just how well I could feel having been ill for so long and it really is an awesome feeling. Not sure I believe in miracles but when one considers that someone else's lungs are living and breathing inside of me, and one looks at the people, the science, skills and technology that makes such a thing possible, it really is miraculous.

Still want to hear from the GICU people especially the two Cathies and Ross. Hope my "comments" option is working.

Be in touch next week.

Cheers,

Ben