Hello Ross

I can't believe it is almost 12 months since my last post.

I really have let it slide but an email from Ross, a wonderful nurse in The Intensive Care Unit at the Prince Charles Hospital, prompted me to revisit the site.

Like most of the ICU staff, Ross was a very caring and dedicated nurse but had one feature that the others may not have had, she is a great cook. I really couldn't stand hospital food (although it has improved dramatically of late) so one day Ross cooked me up an Indian dish the name of which I have forgotten. Anyway it was mildly spicy but very good and she'd made so much that Janyne took the rest home. Thank you Ross for your email and for remembering Janyne and me.

There is one point where I need to correct you however. My transplant was 4th May 2006, a whole two years and five months ago and I am feeling better than I have in over six years. I have put on a lot of weight (94 kilos) but that is only because I am not exercising as much as I should and I am probably drinking a few too many wines or scotches. Anyway, my excuse is that I am living on borrowed time so I might as well enjoy myself. I keep saying I must diet and exercise more but it's always tomorrow.

Healthwise I am fine except for the odd infection and a bit of fungal growth now and then. With the share market slide knocking us around financially, Janyne is now working full time and has me out looking for work. If anyone wants to employ a double lung transplantee who has shingles, osteoporosis, an artificial left hip and probably polimyalga rheumatica (but I haven't been off prednisone lung enough to find out), please let me know.

I am reasonably computer literate, can write well, understand sales and marketing, and don't mind working for commission but a retainer would be nice.

Hard to update a year's experiences in one post but I guess a highlight is Jacqui's upcoming marriage to her long term Partner, Andrew, on Friday 10th October. She and Janyne have been planning this event for at least a year, well maybe a bit less, so everything should go well. Another highlight is that Janyne's son and my stepson, Jason, and his partner Kym had a beautiful daughter, Hayley Janyne Gardener, last May, Janyne's first grandchild and she is ecstatic. One sore point is that she (Janyne) wants to be called "Granny". God she's not even 60 yet. I'll probably get called Grandpa Ben but I'd prefer just "Ben".

Anyway she, Hayley that is, is an absolute delight and it's wonderful watching her change and grow from week to week.

I'll leave things there but will try to update this blog at least monthly, if there is anyone still out there apart from Ross. Again thank you Ross.

Until next time,

Cheers,

Ben

He's back

Hello everyone,

Just wanted to let you all know that I am still very much alive despite a few setbacks in recent times. I had decided that I would keep this Blog going on a monthly basis but I just looked at the clock and found it's been three months! No wonder I'm getting comments and emails.

I am not going to go on and on about my health issues. In fact I would need Janyne's input because I can't remember times and dates of all the hospital stays and clinic visits. Suffice to say that I have had bronchitis, pneumonia, and, more recently, a lung infection. To top things off, the hard drive on my laptop died just ten days before the expiry of the warranty period. (at least something went right).

The worst of this was that I had lost all of my data, email addresses, documents going back to the early nineties, financial records, photos, everything. Back-up? What's that? And only two weeks earlier I had asked Janyne if she had backed up the files on her computer. Talk about practising what I preach!

The computer repairman said he could send my old hard drive to Melbourne to see if they (HP) could recover some of the files but the minimum cost would be around $1,800 and with no guarantees.

So fortunately I have all the important paperwork on file just not in my laptop. The hard part is reconstructing my email address book. It is going to take a bit of time to fix that. Of course I could just wait for everyone to email me and file the sender's address in my address book!

On a sad note, one of our friends and a fellow transplantee passed away on the 3rd October, just short of five years since his single lung transplant. He had been ill for some time with issues probably more related to his medication than his lungs but eventually his body (and lung) couldn't cope with any more and it gave up. Only two weeks earlier I saw him in hospital whilst I was waiting for a CT scan when he was wheeled in before me with a gaggle of medicos from the ICU, tubes and drips everywhere. He recognised me and said hello and I responded with, "I'll catch you later". I couldn't visit him until he came out of ICU but did so on the Friday of my discharge as he had been transferred to a ward. I knew then that when I shook his hand and held his shoulder as one would when greeting a friend, it would be the last time I would see him.

He was only 52.

We all know that a lung transplant is not a cure, it simply prolongs life, but this incident, so close to us personally, really brought home the fact that we transplantees are here for a good time rather than a long time so make the best of it. Unfortunately most of us still need to concern ourselves with mundane matters such as worries about finances, concerns about our loved ones, family issues and the day to day activities that are simply a part of life. But we also need to work on the priorities and categorise those things about life that are most important to us.

So I'll leave it for now but I will be in touch again soon to provide all the nitty gritty about what's been happening over the past months.

Until then, goodbye.

Ben

Told you so!

Despite all the good intentions, it has taken me more than a week to update this blog. Have to admit I was pretty busy. Managed to do a bit of work for Great Southern, finally got that $3,000 Government Grant for the Lung Transplant Support Group Inc. from the Dept. of Health, (Thank you Minister Stephen Robertson), drafted a letter and membership application to all lung transplantees, which have been printed and will go out tomorrow, and I can't think what else. We're also seeking nominations for the Committee. So life continues to be good.

Great Southern shares have been falling back lately due to lack of any further announcements regarding possible takeover bids so the punters are thinking it's all over; yet rumours persist that there is still some due diligence activity going on in Perth. Well who knows? Hopefully we'll get a clearer picture in ensuing weeks.

Health wise I am feeling better than I have for a long time. Shingles persist but either I am getting used to the pain, the drugs I'm taking are working, or a bit of both. My clinic visit to the Prince Charles Hospital went well. The only concern Dr. Peter Hopkins continues to have is that my kidney function is not what it should be due to the immunosuppressants that I'm taking. He is concerned that, over time (I think he said five years) this could become a serious problem. So apart from balancing drugs such as Mycophenolate, Tacrolimus etc., I am to take in more liquids (plenty of Chardonnay, Semillion, Cabernet Merlot and Johnnie Walker) well, I think he really meant water, tea etc. although he didn't specify. But seriously, let's hope we can improve the kidney function before trouble raises its ugly head.

Winter is always a difficult time for transplantees because of the higher risks associated with contact with people who have colds and flus. It is equally difficult to tell family and friends of the higher risks of infection we face if they come to visit whilst ill with a cold or whatever. It seems almost rude to say, "please don't come" but it is very necessary. A simple cold could lead to pneumonia in a transplantee due to the very low resistance caused by immunosuppressanets even if one has had a double dose of flu injections like I have had. So I feel the best advice is to explain the situation honestly and hope they understand. If they are offended, too bad. The risk of serious illness and even death outweighs the niceties we would normally adopt.

Well with those words of wisdom, I'll go away until next time. Stay well and remember, "Nothing is ever as bad as it seems".

Bye, bye,

Ben

Times are good?

It is not really 24th June is it? Where did the month go?

For me it was/is a pretty good one. The pain from my shingles is starting to ease or I am just getting used to it, or both. The worst part is that I suffer from terrible ear aches from time to time and night time and early mornings seem to be the worst. Apparently this can go on for months

We fixed the lethargy I spoke about last time with a couple of bags of blood during my clinic session on 5th June. It seems some of the drugs I am on are causing anaemia. Lung function was great and continues to be. I am putting on a bit of weight and trying to keep around the 80 kilos mark so I have to say that if the rest of my 61st year continues this way, I'll be very happy.

On 12th June Great Southern Limited (ASX code GTP)announced that it had received an approach from a party expressing interest "in the future ownership of the company". Whilst nothing is certain, this announcement has raised much speculation. The share price had already been rising slowly from $1.98 on 20th April to $2.65 on the date of the announcement (Just how does the market know that a takeover bid might be in the wings? Or was it just a coincidence?) Anyway, since then we've seen the price improve to $2.94 so you can imagine, we're pretty happy at present. There's still no further word on what's happening on that front but speculation continues to run high. Hope the share price keeps going. We're still a long way from it's price just a year ago of around $4.00 but who knows what a prospective buyer of the company might pay?. It's all rather exciting.

At the same time there is the usual run to the end of the financial year for people to get their tax deductions. Great Southern's Non-Forestry projects closed on 15th June, but the High Value Timber and Plantations 2007 projects are officially open until June 30th so you can imagine that there is a lot of activity and nervousness around there at the moment. My daughter Jacqui effectively took over my role at Great Southern since I became too ill to work in 2005 and she is reacting exactly the same way as I did at this time of year. "Will I achieve my yearly target, and my bonus, or not?" As usual, much of the business will come in this last week so I don't think she need worry too much. We'll see.

On my own this fine Sunday afternoon. Janyne's gone up to Brisbane to go see a film with Jacqui and I'm here with Cindy who's sound asleep and snoring, do you believe, in her "bed" on the floor nearby. She's a delightful, intelligent, and often mischievous little dog, but we are both so glad to have her. I might take her for a ride in the Golf Buggy around the Hope Island estate later, before it gets too cold. I haven't seen all the new development of late.

Yes nights here have been very cool, around 8 or 9 degrees, but the last couple of days have been quite pleasant and sunny. It's the westerly winds that we don't like.

Just want say hello to Phil who hasn't been well for some time now but hopefully will be feeling better soon. Also to Rebecca who received some bad news health wise recently. We lung transplantees know what it is like to receive news of a terminal illness but once we accept it, we usuallly learn how to cope with it. For those of us lucky enough to receive a donor lung(s), bad news becomes good news. Remember, I was only one month away from being too ill to undergo a transplant. It just proves, there is always hope.

Bye for now. I'll try to give you an update next week but you know what I'm like.

Ben (and Cindy)

Don't tell me I'm 60, tell me lies instead.

It is so hard to believe that tomorrow 1st June 2007, I'll turn sixty years old.

I don't feel it. Except when I looked in the mirror today as I was getting a haircut and thought, "gee, you don't look too good". Or when I later sat down on a seat in the shopping centre waiting for Janyne who arrived just it time to hear a passer-by ask me if I was alright because I looked so bad. He happened to be a paramedic. Anyway we gave him an abbreviated version of my recent medical history after which he advised me to take good deep breaths and try to get some colour back in my face.

What a great way to end my fifties.

I haven't updated this blog in a while mainly because I haven't been too well lately. I felt it wasn't appropriate to complain about my state of health on the anniversary of my lung transplant on 4th May.

However, on 25th April, I was diagnosed with shingles. This is NOT a fun disease. It affected me on the left side of my face, from the middle of my scalp to the base of my neck. I went on Valtrex immediately which is a drug commonly used to alleviate the symptoms of shingles. Some time into the disease I began to have episodes of the most excruciating pain I have ever known. They would last for anything from 1.5 minutes up to 3 minutes. It was like someone pouring boiling hot liquid over the left side of my face and left me literally screaming and crying like a baby. It would strike without notice and a few of my friends who may have been visiting at the time simply couldn't believe such pain. Fortunately I finally had enough and I asked Dr Hopkins if there was anything I could take to stop them. After consulting a colleague, he prescribed a drug which is normally used as an anti depressant and after taking this for a couple of days the pain spasms disappeared, thank god.

I have to admit that this is the first time, since I was diagnosed with Lung disease in April 2002, that I asked the question, "what have I done to deserve this?". So again you see, a lung transplant is not a cure, but it is an opportunity to live a better quality of life then would have been the case. If we hadn't taken the offer of a set of lungs in May last year, I am certain I would not be here today. So what ever life throws at you, face the next day with confidence and enthusiasm. You'll be amazed at the result.

Oh by the way, on 5th May I was, and had been for a few days, suffering from severe diarrhoea. I phoned Dr Hopkins and he advised a few days in hospital to receive intravenous fluids and see what could be done about it. So again, a day after celebrating the first anniversary of my lung transplant, I'm back in Hospital. In fact I'm starting to know many of the Doctors and nurses there. Yes, Prince Charles Hospital is indeed a second home.

I am going back to hospital next Monday for a normal clinic session and will ask Dr Hopkins why I am feeling so lethargic but my guess is that it is caused by the cocktail of drugs I'm currently taking. It just amazes me how all these drugs know exactly where or what to attack, particularly when I take a large number at a time.



Anyway it is getting late so I'll finish off now.



Talk again soon,



Regards,



Ben

A Great Anniversary - But let's not forget

Amazing photo taken by Giorgio Raffaelli.

It has been wonderful to receive all the tributes and well wishes from my family on this, the first anniversary of my lung transplant. Sometimes I think they're speaking about a complete stranger.

But let's not forget that a little over a year ago, someone else's life support was turned off. He/She may already have been brain dead but a difficult decision had to be made. The result of that decision was that a heart stopped beating, lungs stopped breathing, kidneys, the pancreas, liver and gall bladder ceased functioning and a person was laid to rest. For the family who made this decision, this must be a very sad time.

Yet that person, again supported by family, had declared that his or her organs could be made available for transplant and within hours of ceasing to work, many if not all of them were soon functioning inside someone else. In this case, the lungs went to me and who knows how many others have benefited.

I think about the donor family every day and I know others I've met who've received transplants think the same. We think about their sadness. And we're so grateful for their courage in helping others, like me, to have a longer, better quality of life than would have been the case.

To Janyne, all of the comments already made on today's posts say it all. You have been fantastic even though life hasn't been a bed of roses these past years and there will be more challenges ahead. I thank you so much for your love, for caring for me so well under sometimes difficult circumstances. I cannot imagine how others, who don't have a loving spouse or children to support them, manage.

To the rest of my family, I am glad to be sharing tonight with you. We all know that I wouldn't be here but for the transplant. Thank you for your care, compassion, understanding if I get a bit "cranky", and general loving support.

Let's hope we are all together twelve months from now and that the year in between brings everything we hope for.

Ben

Happy One Year Anniversary!

Amazing photo taken by Thomas Hawk.

Congratulations Dad!!!

Well what to say?

Firstly, WOW! What a year! It’s not a standard thing to be celebrating and to be honest feels a little ‘weird’. The whole experience, this past year, has been not unlike a rollercoaster; lot’s of ups and downs but we’re still here, kicking and screaming, fighting our way through and I’m glad you all came along for the ride!

I started this blog just under a year ago today. Since then, Dad and I have written almost 100 posts, had around 10,000 visits from people all over the world, keeping a journal of everything that’s happened. I haven’t looked back on the past in a while but at some stage today, I will. I’m sure it’ll be a little emotional, maybe even a little scary (and that’s just checking my grammar!) but I’m looking forward to it. So much has happened; I’m glad I made the decision to blog it all in the beginning and I really hope you’ve enjoyed this experience as well.

So today we’re going to try something new. I’m going to open up the blog to the rest of the family. Dad and I came up with the idea a few days ago and since you’ve only ever heard the two of us carrying on from time to time, it’ll be a different perspective to have someone else blog about their thoughts/reflections/experiences over the past year. I’m excited to see what they write!

Starting things off will be Mum (Janyne), then throughout the rest of the day Jax, Mel, Jason & Kym and myself will all write individual posts. Finally Dad (Ben) will finish it up with his personal post as well. [Note: View these below!]

Once again Dad, CONGRATULATIONS on the One Year Anniversary. Wow, how things were a little different a year ago today!

"Life isn't fair. It's just fairer than death, that's all."
- William Goldman


Paul.

One Year On: Janyne (A Time For Reflection)

Amazing photo taken by Thomas Hawk.

A Time For Reflection

It is hard to believe it is twelve month’s since Ben’s transplant. Time has passed by so quickly.

As each day passes by, I am amazed at Ben’s tolerance and capacity to cope with what he has had to endure over the past year, let alone the previous years since he was diagnosed with Pulmonary Fibrosis and especially the twelve months prior to transplant.

As Peter Hopkins, the Qld Lung Transplant Physician said to both of us recently,

“Transplants aren’t easy”

and we both agreed.

Firstly, without “The Gift of Life” from his Organ Donor he definitely would not be alive today. Secondly, without the expertise of the Transplant Unit, the surgeon John Dunning and the Intensive Care Unit at Prince Charles, Ben would not have survived. One cannot realize what these people do and their dedication level. It is more than a job to them. Thank you to all those involved at The Prince Charles Hospital. I cannot say thank you enough.

Ben is really an inspiration to all of us. His ability to deal with the side of effects of all the medication and the ongoing health problems he has faced and maybe will face in the future. We take each day at a time and try to make the most of what we have.

As Ben tells me constantly, without a transplant the alternative is death.

Since we met some 29 years ago, Ben has always had his goals and dreams. Fortunately, he has been very successful at achieving many of these. His motto is – never give up and nothing is as bad as it seems!! His children have been told this on many occasions over the years. We both hope they will all remember this during their future years and will never give up.

Hopefully, the next twelve months and the immediate ongoing years brings you, Ben, a better quality of life so we can both enjoy what life has to offer, whatever that maybe.

You are always in my thoughts,

I Love You – Janyne

One Year On: Melissa (A Greater Perspective on Life)

Amazing photo taken by Diana Lemieux.

A Greater Perspective on Life

Well I still can't believe it’s been a year and what a year I must add!!! How that time has just flown, well maybe not for Ben but definitely for me.

I remember getting the call from Jacqui about 5.15pm. I had just turned my mobile on which is very bizarre because I normally wait until I get on the train. She said that Ben had received a call about a possible transplant. That night was the strangest night - sitting there waiting to see whether it was a match and if he would be having it or not. Strangely, I just knew it was going to happen and had to fly to Queensland to be there with the rest of the family.

I got a call from Mum in the early hours of the morning to say it was all going ahead. I called Paul to help make flight reservations and then started packing (this is like 3.30am!!!).

I will never forget arriving at the hospital and going into intensive care, seeing Ben lying there and everything just hit all at once - reality had set in. You hear about it on the phone, but to see it in person is another thing. I realised then what everyone had been going through during these very stressful, awful, times. How I wished I had been there to go thru it with everyone and I felt so bad I hadn't.

I remember while looking at Ben and all those machines (oh those
machines!!) I felt faint and was going to pass out. Mum had to get the nurse and they end up wheeling me out in a wheel chair, into the waiting room, how embarrassing!!! Here Ben is in ICU and I'm passing out!! But it is very common the nurse said. I did give everyone a scare though!!!

After what we all saw and the ups/downs with Ben, how he spent longer in ICU than expected, whether his body would accept the new lungs; it was all just waiting game. You soon get a greater perspective of life and how precise your family/friends are and what you can do for others too.

Because I live in Melbourne it is very hard for me to get up there all the time, but I keep in constant contact with everyone - I honestly don't know how Mum has managed through this last year and the previous years too. She definitely is one in a million and to me hasn't complained at all. I suppose that's what you do when you love that special person in your life.

How has Ben copped with all this, I honestly don’t know but I suppose you do. You get a 2nd chance of life but to go through all of this, on top of the lungs - the surgeries, backwards/forwards to see specialists/hospital, rejections, now shingles, you name it he has had it. What more can go wrong you ask????

Well I now hope the next 12 months things really do pick up and I'm sure they will and he can start to live a much more normal life again. He so deserves all this for everything he has been through. I wish you Ben all the very best for the next year - I think about you all the time and love you heaps. You have always been there for me and given me so much. You’ve treated me like your own daughter. Oh and also given me some stern words but it has made me take a good look at myself and get on with my life too in a positive direction.

Happy One Year Anniversary!

Melissa

One Year On: Jay, Kym & Tylah (As Today Fades..)

Amazing photo taken by Chris James.

As Today Fades

Dear Ben,

As today fades this may just be an ordinary day for most but for us it’s been twelve months since the Angel in Heaven gave you your second chance and ours. We are sure that you wake everyday and thank silently the Angel and the family for their wonderful gift, we also thank them silently.

What a time it has been for you over the last year, no not really just the last year but for the entire time that you were not well before the transplant. During this time, Jay and I have never heard you complain about anything (but I’m sure that someone has! ha ha), you have been dealt some pretty tuff ups and downs along the way but you have always taken on board any obstacles in a positive and admiring manor.

After visiting you in the hospital immediately after the transplant it wasn’t until then that did we realise what you had endured. Your strength during this time was amazing, your courage and determination unbelievable, your will to survive was truly inspirational.

We are sure that without the support of your loving wife (Mum) things would have been a lot harder. We would like to thank her for being the most caring, loving, unselfish person that we know. We thank her for being there for us in the hard times, we thank her for loving you the way she does.

We are sure that you have set some of your own milestones, not that each day isn’t a bonus, but we want you to share some of ours with us.

• 2007 secret Santa, and maybe we might have to up the anti on the limit?
• Our marriage next year in LasVegas (your shout for a drink at the Caesar’s Palace)
• Both of us losing 20kg
• Tylah completing high school
• Tylah obtaining her drivers license, (she’s keen for a spin in the Porsche)
• Jay turning 4 (p.s Kym turning 50)
• And anything else that might happen along the way! (no more grandkids from this union that’s for sure!!)

Here’s to one year up and plenty more to come. We love you.

Jay , Kym and Tylah