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

One Year On: Jacqui ("Dad, I love you Dearly")

"Dad, I love you Dearly" - Jax

A year and one day ago I was leaving my last appointment for the day and checking my messages on my mobile phone. There was one from Mum and she sounded rather panicked. This isn’t unusual for her. She tends to leave messages in a certain tone of voice that makes you think something is wrong. I rang back immediately and she said Dad had received “the call”. The long anticipated “call”. I couldn’t believe it was actually happening. I thought I was dreaming. Those of you who know me well, know that I experience very vivid dreams and anything could happen in them. But this was the real deal. I met Mum and Dad at The Prince Charles Hospital. And you pretty much know the story from there. I swear it was the longest night of my life. Dad was very calm cool and collected throughout the entire night. Even through a time like this Dad kept his composure as the man of the family and he had to ensure that his family was happy and safe.

Dad is a very selfless man. Throughout his sickness he always put us first and worried more about us then himself. Remembering back I was crushed to see my Father so helpless. It pained me to see him struggle trying to walk a short walk from the bedroom to the kitchen table. Even though he was on oxygen the grasping for air was intense. And to see him pretty much a brand new man today is more than a miracle.

I was very impressed with the hospital staff – Surgeons, Doctors, Nurses and Administration. If it wasn’t for these people Dad wouldn’t be here today. We are very lucky that there are such devoted people in this world. As they wheeled Dad down the hallway to theatre I said to Mum this is just like on the movies. It seemed surreal. Mum chuckled at me. When recently watching the Ultimate Donation it brought me back to this time. Seeing Dad lying there on life support he looked peaceful. I certainly wasn’t prepared for the road ahead. And for Dad it was a rough and bumpy road ahead. You didn’t know what to expect and Dad made the journey and eventful one. He is a fighter and a determined man.

I must admit even though Dad does not complain he can get a little shall we say “cranky” at times. At least he does not get as cranky or more to the truth angry as he did before the transplant. I recall one day when we were working together. Dad was exiting the elevator I was about to enter. He was abusing this poor old man that looked about 80. I was horrified. It is probably the first time in my life (and hopefully the last) I pretended I didn’t know him. There are many other episodes but I won’t go into those. But as the doctors always say, the drugs cause his mood changes. We just need to ensure we aren’t in the firing line.

Fortunately we are a very close family. My Mother is the most amazingly brilliant dedicated woman I have ever met. In the last 2 years Mum gave all she had to Dad. She was not only a rock for Dad but also for all of my siblings. I wish I could grow up to be half the woman she is. I saw Paul grow up very quickly into a fine young man. He took over as the head of the family. He surely knew exactly what was happening at every stage of Dad’s stay in hospital and kept us fully informed. Dad if you had seen him you would have been very proud. Melissa gave me a fright. I remember when she arrived and Mum took her into ICU to see Dad. Jay and I were in the waiting room. Mum walked in with this dreadful look on her face. We were asking if Dad was ok. Did something happen to him? She finally got it out that it wasn’t Dad it was Melissa. Mel nearly passed out. We probably shouldn’t have laughed at her but I felt we needed a good laugh at an emotional time like this. It is amazing how you can all pull together when needed the most.

Here we are a year on. Dad is still here and all thanks to one very generous person that gave him the gift of life and it truly is the ultimate donation. I hate to think of what our lives would now be like without having his opportunity.

Dad has always lived by the philosophy that nothing is as bad as it seems. And you know what, he is exactly right. You need to be focused on what you want to achieve. And when you feel down and miserable you need to pick yourself up, dust your self off and soldier on. You are only here for a short time so make sure it is a damn good great time.

Dad I love you dearly and if there were more men in the world like you it would be far superior place to live.

Happy 1st Anniversary!

Love Jax!

One Year On: Paul (Go get em' Tiger!)

Go get em' Tiger!

I remember getting the phone call from Mum that afternoon. I was at work, just about to finish up for the day. As Jax said earlier, Mum had a tendency to start off a conversation or message and sound as though something was wrong, probably due to being on edge at that time! When I answered the phone I knew this call was different, I knew from the panic in her voice that it was either ‘the call’ we’d all been waiting for or something else was drastically wrong. Fortunately it was ‘the call’.

That situation panned out totally different then I had rehearsed it. Because I lived and worked closest to Mum and Dad, I knew I’d be involved in the process somehow. I’d prepared myself for it since Dad got on the transplant list. I knew Mum would be a wreck, all panicky and I’d man-up and be the rock, the cool calm collected guy that had everything under control; much like Dad would have been. I even decided not to drink over Easter so that I could drive, just in case we got that call. When the call came though, it was a different story.

I’d had a cold that week and since I didn’t want to infect Dad, hadn’t been over to see him in a couple of days. When I got the call from Mum, I still had the cold which meant no going along to the hospital for me. That was a hard thing to deal with. I knew that the transplant would be successful but in the case it wasn’t, well Dad would die and I wouldn’t have been there beforehand to say goodbye. The solution was simple though, Dad just wasn’t allowed to die. I’m still amazed at how calm you sounded on the phone the last time I spoke to you pre-transplant.

So here we are a year on and as you know Dad didn’t die, the transplant was successful and even though we’ve had ups and downs (just a few), it’s been amazing to see my Dad back again. Not the sick Dad, who each time I saw him, kept deteriorating; the new Dad, the one with the second chance who everyday I saw post transplant (I wasn’t only there for the hot dinners!) was getting better! To see that ‘life’ back inside of him is overwhelming. I never knew you could feel so much for someone.

I’d never lost anything I was close to in my life before. I didn’t understand ‘death’; I didn’t want to understand it. I didn’t want anything to happen to those around me I loved. The night we had to put Selby down though, I knew what ‘losing’ something/someone meant. The emotional effect it had on me I’ll never forget.

It’s interesting to read over everyone’s comments; especially Jacqui’s who commented on me being so ‘strong’. I recall seeing Dad in ICU for the first time. Dad’s condition, the state he was in, all the machines he was hooked up to, and none of it bothered me. It was inspirational; it meant that he had had the transplant and all would be ok. These machines were breathing ‘life’ into him and once he was well enough to take over, he’d do that job himself. He’s strong. He’s an amazingly strong man and I knew that. I made it my mission to find out everything that was going on, to understand what the machines were, what they did, what drugs he was on, everything! It was my way of trying to stay ‘in control’, to be strong. When Selby died, I think it changed me. I lost my ‘cockiness’. I understood you just can’t do it all yourself, it’s ok to breakdown or ask for help from others.

I remember when they were weaning Dad off the sedatives trying to wake him up. Before that he’d have his eyes open but it was clear he didn’t really now what was going on. This time he woke up and was ‘freaking out’ (for lack of a better term). I remember how he looked at me, like a man who was really struggling and asking for ‘help’. It turned out he didn’t realise he had had the transplant; he thought he was in hospital, that something was wrong and he was dying. That afternoon I gave him a little pep talk. I’m not sure if you remember it Dad but I quite sternly told you that you had to hold on, that this was the hard part but you’re a fighter and you can make it through! It was strange being in that position, usually it was on the other foot with Dad guiding me.

I’m rambling now but what I’m trying to say is that this past year, everything that’s happened has really helped me grow up.

We couldn’t have gotten through this without such a strong, close, family. We’ve got an incredible bond that can’t be broken. No matter what’s happened, we’re there for each other. I can’t appreciate this fact enough and I’m certainly not lost on just how important family is.

Mum, you’re an absolutely amazing woman! I hope you understand we all appreciate you more than words can describe, even if we don’t say it as often as we should. Haha, we know Dad isn’t the easiest person to deal with (at times) and you’ve been there for him this whole time, no matter what. It’s an example to me of what two people in love do for each other. Hopefully soon you and Dad will be able to properly enjoy life, to do the things you want to do and have some fun together!

Jax, Mel & Jay, I don’t know how you put up with such a little smart arse for so long! Not that I’ve stopped, I’ve just maybe dulled it down a little bit. To you guys especially, thanks for being there. Jax, I’m so proud of you and what you’ve achieved. You’re so thoughtful, so-friggen-organised and I know you’ll find success in whatever you do (p.s. Andrew’s ok too!). Mel, you strike me as such a strong woman – moving to Melbourne and being away from Mum (who you’re incredibly close to) to follow your dreams has been an inspiration. You’re always up here as soon as we need you! Jay, thanks for being the older brother. You don’t take my crap – even if I didn’t realize it was ‘crap’ at the time. I’m so happy for you that you’ve met Kym, fallen in love and the two of you are getting married! Can’t wait for Las Vegas.

Dad, do you remember you always use to call me ‘Tiger’ when I was young?

I’ve said it a number of times to you in the past twelve months but I don’t know what I would have done without you here. You’re always there with good advice, making me realise that things really aren’t as bad as they seem. In life’s journey I’ve been thinking about you a lot, what you would do or what you’ve been through and it helps me defeat/overcome my obstacles. I’m not there yet, I’ve got a long way to go, so much yet to do and achieve but you can rest assured I’m on the right path.

So now as you’re facing some hard times, trying to get back on the wellness path, just know I’m here for some good advice too – “Go get em Tiger!”

I love you.


Paul.

That Bloody Little Leprechaun

Early last week it was quite obvious by the way Ben was looking and feeling that something was wrong. I suspected it may have been due to infection, given that Janyne had been sick with the flu the week before and he seemed to fit the symptoms. On Wednesday (Anzac Day) he broke out in a rash accompanied by a considerable amount of pain and decided to call the hospital. Turned out he had Shingles.

For those of you who don’t know, Shingles is an extremely painful form of Herpes that is a reactivitation of VZV (varicella zoster virus), the primary infection which causes chickenpox. It’s one of many viruses that can be caught by people on immunosuppressants (the drugs Ben takes to stop his body rejecting the new lungs). Unfortunately it’s quite painful and although it can be treated fairly easily, using a drug named ‘Valtrex’, the pain tends to stick around for a couple of weeks.

The good news is he is getting better day by day. Today marks a week since he has been taking the Valtrex which seems to be clearing up the obvious signs (rash and blisters) of the virus, just not helping subside the pain just yet. This morning he commented that whilst still in pain, he’s doing a lot better. The inside of his mouth, and tongue, had that many blisters he could barely eat, now he’s starting to. Interestingly enough it usually only occurs on one side of the body, in Ben’s case the left (strange).

In other news, he went in for a check-up on Thursday and all his vitals seem good. Once he feels a little better he’s going to get back on the computer and start blogging again, so I’ll leave any personal details to him.

This brings us to the title of this post, “That Bloody Little Leprechaun”.

At times it can feel like he (the Leprechaun) has sent us on the impossible mission of finding the ‘gold’ (metaphor for ‘good health’) at the end of the rainbow. So far we’ve had the Transplant, the Hip Replacement, the Fundoplication, two cases of stage 2 rejections and now Shingles (have I left anything out?) it almost brings the question, “What’s next?”

We’re almost at the date of the big 1 Year Anniversary (post on that to come soon)!!! Jax (Jacqui) has assured me she’s going to go and find this bloody little Leprechaun, trick him out of the ‘gold’ (yes, yes, the ‘good health’) and we should be fine for next few years! So keep your fingers crossed for Jax, and Ben, and all of us wishing him good health =)


Paul.

Round Up: THE ULTIMATE DONATION

Wow, what an amazing show!

If you missed it last Wednesday, bad luck, it was the series finale. I’ve sent an email to the Executive Producer, Greg Quail, in hope we may be able to somehow get our hands on it. I’ll let you know what happens.

Janyne (you’ll love this), it didn’t do too badly in the ratings either – No 30. It even beat Burt’s Family Feud (haha).

Whilst the show concentrated its efforts around those who were given another opportunity at life, they did show the other side, death. Unfortunately (I’m still searching for his name) a young (40?) police officer who’d been on the list for quite some time, had been waiting too long. A day after his heart transplant, he died. I’m thankful the wife and family of the man allowed this part to be shown. People waiting on transplant lists are sick, very sick, and with each day they wait their bodies are deteriorating. We need more organ donors! If you haven’t already signed up you can do so by clicking here.

After doing some googling, I found some discussions regarding the show and the Channel 10 web site. Here are the links.

The Ultimate Donation - Channel 10 (make sure to read the Forum)
Organ Donation Petition – eBay
The Ultimate Donation – Essential Baby

There are some interesting debates/views/opinions expressed above on the topic of Organ Donation. I’ve weighed into it with my opinion which you can find here (Post 67 under the name ‘paulboy4212’).


Paul.

THE ULTIMATE DONATION

In another perfect example of how time gets away from you, I'm leaving it till now to mention this very important announcement. Tonight on Channel 10 @ 9:30pm they're airing the first episode of a short 2 week series named "The Ultimate Donation".

In the words of a Channel 10 copy writer..

" 'The Gift of Life' shows how the often-tragic death of one person can result in organ transplants which can bring the precious gift of life to as many as six people. "

Be sure to check it out! They've had something similar to this on before and it's amazing the process, people and work involved in making it all happen!


Paul.

Happy Easter

It's been a whole month since my last post. Time seems to fly by.

Had my half Nissen fundoplication on the 8th March as planned. Everything seemed to go well, a bit of soreness for a few days, a bloated feeling for a few weeks, mushy food the whole time, but it seems to have fixed the reflux problem. I'm still feeling very tired yet my lung function is excellent (FEV1 of 3.35 to 3.4), temperature is normal and I'm losing a bit of weight (below 83 kilos) so all the vital signs are good.

Went back to clinic on Monday 12th March and now not due back until 16th April although I have had a couple of blood tests in the meantime. Maybe it's having three lots of surgery over 11 months, or the stress associated with the fall in the GTP share price or both but I find myself lacking in energy. I need to improve my fitness level as I have had little exercise in the past few weeks, just couldn't get motivated. Seems I'll have to force myself as I am keen to try getting back to work soon. (we'll need the money!!)

Finally sold the Porsche (settles next week) so we're down to two cars and I think we'll keep things that way until I see what happens work wise.

It is only four weeks to the first anniversary of my lung transplant (4th May) and only nine weeks until I turn 60 (1st June). It is still hard to believe that so much has happened in a year and I still wonder what might have been had a donor not been forthcoming. Certainly I would not be alive today and Janyne's life would have been quite different (she might even say, "for the better"!!!!!) (Just joking).

Thanks for your good wishes to Kathryn Flynn and Judy Ryan from the Second Wind Lung Transplant Assoc. Inc in the U.S. ( www.2ndwind.org/ ) . This is an organisation similar to the Queensland Lung Transplant Support Group Inc which we have just established here but obviously far more advanced having commenced in 1996. I am hoping we can use their know how to develop our own association.

It is reassuring to read the experiences of others and I think organisations such as theirs and ours, and a blog such as mine, can help people awaiting transplant or those who have already had one, to realise how others have coped and to understand that they may not be alone in experiencing the ups and downs of life post transplant. Whilst we are always grateful for a second chance we can still have our sadder moments the same as everybody else. The key, however, is to concentrate on the good things and do what we can to fix the bad.

Also hello to Rebecca who is in Europe at present, unless she has recently returned.

Anyway, I'm back to clinic on the 16th April and also seeing my "Fundo" surgeon, Professor David Gotley. I'll let you know how it all goes.

Bye,

Ben

So there it is......

Not a good night tonight.

Feelings?

Worried, concerned, all of the above?

Yes it just seems to get harder every time you have to undergo another "procedure". They put a canula in whatever vein they can find , put you under, probe your insides with various tubes and cameras, hopefully fix the problem (reflux), tie a few knots and send you off home in a couple of days.

In the meantime your financial world is being turned upside down because a few seat hugging backbencher politicians listening to their bleating farmer electorate can suddenly change the whole face of the Managed Investment Scheme scenario. Am I bitter? You bet!

I have spent the past 15 years in this business. The claims made by the anti MIS supporters are based on "anecdotal" evidence, not facts. I have written to every Federal Government Minister I can find to urge them to reconsider this decision. I have yet to recieve a reply.

So where do we go from here? Well we simply live in hope. There is always light at the end of the tunnel. I just find it harder and harder to keep a positive attitude. But in the end, a negative attitude achieves nothing.

But I am very, very tired.

Maybe my "Fundo" on Thursday will make me feel better.

I really hope so! I REALLY hope so.

Goodnight,

Ben