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

Latest update

As per Paul's last posting earlier, I got to read all your comments this week, some going back to early May. Thanks to all of you for your kind thoughts and good wishes.

The past week has been fairly uneventful. On Wednesday I had a bronchoscopy at Prince Charles Hospital where they took some lung tissue to check for rejection or infection and generally make sure the new lungs are performing well. I was given the all clear so it was good news. I know that at some point I will experience a setback of some sort, almost all transplant recipients do, but so far I'm having a dream run so, touch wood, I hope it continues.

Watched the Medical Emergency program on channel 7 last Tuesday which included a segment about a lady undergoing double lung transplant surgery. It was just amazing to think that I was in that position only a couple of months ago. In particular I was surprised at just how big the new lungs were and, looking at the scar on my chest, wondered just how the surgeons could fit them in and make them work. The program continues next Tuesday night at 8.00pm and I'm looking forward to it.

Haven't managed to catch up with all the staff at Prince Charles' GICU yet but I'm back for my normal check-up on Thursday so we'll try again then. In particular I want to catch up with Nurse Ross for her Dahl recipe and the two Cathies.

Talk again in a week.

Bye,

Ben

Paul's Sincerest Apologies!

I've just discovered that comments posted to the site weren't showing up. It's my fault.. I'm sorry! The BOSS is going to kill me.. (just remember how precious life is Dad?!?!)! The good news is they're all back up and Ben (Dad) will no doubt be reading through them all soon.

Whilst I'm writing, I'd like to quickly thank you all for your kind words and well wishes along the way. The blog is not only a great way for us to communicate Ben's progress but to also look back and recollect just how far he has come. Every time I see him now it's a shock, he's doing so well and is really a whole different person. It's still a road we're all traveling though and Ben (an avid blogger now) will keep you filled in along the way!

Thanks Again.. don't forget, next Tuesday 8pm.. part two of Medical Emergency. I've left a comment on Ben's post below.

Medical Emergency

Forgot to mention yesterday. The TV program, Medical Emergency, on Channel 7 at 8.00pm on Tuesday 20th June, features a woman undergoing a double lung transplant. Might be worth a look if you are interested.

Cheers,

Ben

Latest Update

Another week has passed and I have to say I'm generally feeling great. Spent most of the week phoning or emailing friends and business associates letting them know I'm back on deck.

Thursday was check-up day at Prince Charles Hospital and all test results were fine. It's a long day because we're up at 5.15am for the hour and a half drive to Brisbane. Usually we don't leave the hospital until around 2.00pm. On the bright side, we got to meet some other transplantees and it's always interesting to swap stories and discuss progress especially at the different stages after transplant. One chap had a double lung, heart and liver transplant eleven weeks ago and he looked and felt terrific. Makes my little operation like a walk in the park. We're quickly becoming part of the "transplant family". Back next Wednesday (21st June) for a bronchoscopy and biopsy to make sure that there is no rejection. Apparently 40% of organ rejections do not show up in normal tests and a biopsy is necessary around once monthly to ensure things are OK.

Still building my strength and the hip is playing up but Dr Hopkins wants to delay hip replacement surgery for at least four months and ideally twelve months if possible. It's a juggling act between exercising and damaging the hip but we're doing OK at present. I am just so happy to be alive and well, a bit of pain is not really a bother.

If Nurse Cathy (dob 18th May) or the other Cathy (Cathy two degrees) is reading this I'd appreciate either contacting me on 0419 725 468 to let me know if she'll be in on Wednesday 21st or email at benbrian@iprimus.com.au. I'd love to catch up with all the wonderful staff in Intensive Care.

Will update again after the biopsy on Wednesday.

Take care,

Ben

Another week already?

Saturday 10th June 2006

I can't believe another week has passed since my last entry. Continuing to get stronger and used to doing normal things without the need for assistance or oxygen. Have had two visits to Prince Charles Hospital for check-ups and everything is working well. Next visit is Thursday 15th June and I'll probably have another bronchoscopy to "clear the drains" and check everything is OK inside. Should be allowed to drive again after that.

Starting to get that "what to do with myself" feeling. Need to put some plans together. Apart from my daily exercise routine and visits to shops etc., I really need to find something more challenging and constructive. Perhaps I'm too impatient.

Janyne and I are pondering the pros and cons of getting another dog. Concerns about being tied down vs the joy of having one around means we'll probably wait a month or two to see how the new lungs settle in and my hospital check-ups become less frequent.

Talk again next week.

Ben

Ben Says Thank You

So here I am, just 28 days after a double lung transplant, at home, at my laptop, trying to find the words to describe how I feel. How does one describe the transition from barely able to walk 15 metres with oxygen to being able to ride an exercise bike for 25 minutes twice a day and breathing normally afterwards?

How does one explain the elation at knowing there is a quality life ahead when only a few weeks ago I thought another month or two without a transplant and I wouldn’t survive?

More importantly, how does one thank all the people involved?

First, of course, is the organ donor. The concept of the gift of life, the willingness, on passing, to give over part of oneself so that a complete stranger may live, is so overwhelming that I cannot find words worthy enough to describe the humility, gratefulness and responsibility I feel. Humble because of all the people to whom the donor’s gift may have been directed, I was chosen; grateful, obviously; and responsible, because it is now my responsibility to do everything in my power to protect these lungs and allow them to do the very thing the donor intended.

To the family of this giver of life, you should be so proud of what your loved one has done. Even though I don’t know who it is, he/she will remain in my daily thoughts for the rest of my life. Every breath I take will be a reminder.

Second there is The Queensland Lung Transplant Unit. I hesitate to name names for fear of forgetting someone but in particular I want to thank Dr Peter Hopkins and Dr Keith McNeill and their team who, through following the progress of my illness, agreed just six short months ago to place me on the waiting list and whose care, attention and compassion have helped me through the past weeks and will do so for the rest of my life. Then, of course, the surgical team headed by Dr John Dunning, a man I haven’t even met yet (Janyne has), whose skills have made the transplant possible.

Third is the fabulous staff in the Prince Charles Hospital Intensive Care Unit. There are too many people to mention individually here but the doctors, nurses and wardstaff are so dedicated, so caring, in what must be a very difficult environment. Yet they are always cheerful and doing what they can to keep patients’ spirits up and assist in recovery even to the point of visiting or bringing in food for me. (Not that I have any complaints about the hospital food!!!!). Even the physiotherapists, regarded generally as hard task masters, are genuinely helping to improve strength and mobility which, in turn, aids recovery.

Then we have the ward staff, speech therapists and, of course, Eleanor, our social worker, with whom Janyne has had many a conversation (well, Janyne has had many a conversation with everybody at Prince Charles including visitors to other patients).

Thank you to my brother Tony who flew up from Melbourne for the day to celebrate my birthday. To all who sent well wishes, phoned, emailed or sent flowers. To the Directors and staff at Great Southern Plantations for their valued support.

Finally, I want to make special mention of my family. Paul and his strength and dedication and his innovative “blogspot” website which has kept you all so well informed of my progress and taken a heavy burden off Janyne’s shoulders. Jacqui, who has visited me almost daily despite a very heavy work schedule at the end of the financial year and who, with Andrew, has opened her home on many occasions so that Janyne and Paul wouldn’t have to travel back to the Gold Coast each night. To Jason, and to Melissa, who made the special trip from Melbourne to lend her love and support.

Finally, I want to thank the most important person in my life, my wife Janyne. Her courage, her positive attitude, her sense of humour and her strength in times of some very difficult periods have earned the respect of everyone she has touched including family, friends and hospital staff. This at a time when our beloved Selby had to be put down, and after four years of caring for me during my illness. There are no words that can adequately express my gratitude. But I will do everything I can to ensure that she shares in every aspect of our improved quality of life and that our years ahead will bring her the happiness she deserves.

Ben