Sunday, February 25, 2007

Grey's back - a week's gone by

Thought it was rather boring last week. Grey's Anatomy that is. Guess I'm just not concentrating.

Had my clinic session on Thursday 22nd Feb. at Prince Charles Hospital. Dr. Peter Hopkins was concerned that I had had two stage 2 rejections in the past nine months. Stage 2 is considered mild. It appears that on both occasions it was the pre surgery (hip replacement and planned Fundoplication) move from Everolimus (trial drug) to Myfortic combined with Cyclosporin that caused the problem. (This drug business is all trial and error).

Now it looks as though I'm off Everolimus, off Cyclosporin, and on to Tacrolimus and Myfortic. I hope I got all that right. So it's wait and see until my Fundo op. on 8th March and then we'll go back to trial and error again. Somehow, I suspect the current drug regime will continue into the foreseeable future.

The controversy in regard to MIS schemes continues to cause me a lot of stress. Great Southern shares have dropped to $2.02 (from a high a couple of years ago of $4.65). That's a massive paper loss for us and with little hope of recovery until some certainty returns to the sector.

The Government simply hasn't done its homework on this and I have urged, as have hundreds of others, that sanity prevail and that there be a stay of proceedings until the matter can be properly debated by both sides, farmers and MIS managers, in the High Court if necessary. I have written to a number of members of Parliament including the Prime Minister, The Treasurer and various ministers, expressing my concerns.

I am not against change as long as it is decided after a thorough understanding of the effect change has on the rural community, on jobs, on export income, and on ordinary shareholders.

"Landline" (ABC TV - repeated Monday 26th Feb 11.00pm Australia Eastern time) today had a fairly balanced report on the industry and it did appear that there will be a phasing in period before non-forestry Managed Investment Schemes are given the chop as far as tax deductibility is concerned.

So we continue to have hope for the future but I can tell you that we don't need all this stress. A new life after lung transplant, little income for eighteen months, the ups and downs associated with drug trials, hip replacement surgery, serious reflux problems, and now financial stress is all taking its toll and I am feeling very tired. It's a real effort to pick up each day and go on. But as always, I say, "Nothing is ever as bad as it seems" and I am sure things will get better.

Let's hope so anyway. I am just very, very tired.

Sleep well.

Tony, good luck for 28th Feb settlement on your new venture and Happy Birthday for Friday (I should have called but at least we were thinking of you). Phil, hope you're feeling OK, or as well as can be expected. Geoff, we haven't heard from you but continue to hope all is well.

Take care,

Ben

Sunday, February 18, 2007

Just before Grey's returns

Hi all,

Grey's Anatomy is back tonight, in just a half hour. 60 minutes is on at present so I'll quickly bring you up to date.

Health wise I am improving again but still experimenting with Tacrolimus following my transfer from Cyclosporin. Levels have been too low and I am now taking 8mg twice daily up from 4mg a couple of weeks ago. In the meantime my prednisolone intake is falling and I'm at 30mg per day reducing to 7.5mg/10mg over the next couple of weeks.

Boring stuff I agree but the underlying concern is that we need to stabilise my medication in readiness for my "half Nissen Fundoplication" early next month. My Doctors are almost certain that rejection and infection is being caused by chronic reflux yet we need to reduce some medication which reduces reflux prior to surgery. So it's the classic "chicken and egg" story but the general consensus is that we manage the situation as best we can, bite the bullet and go ahead with the surgery as scheduled. The sooner the reflux problem is fixed, the less likely I am to suffer rejection and infection and finally I can get on with things.

So that means back to weekly visits to Prince Charles Hospital for tests and balancing the medications as required. I have to admit that my transfer to tacrolimus has its side effects. Moods, particularly bad tempers, are hard to control, sleep is very much disturbed and when I do sleep I have some very strange dreams bordering on scary. Hopefully, as my body adjusts, these things will pass.

So the next goal is to get over the "fundo", feel better, and get on with life.

On the positive side we've lodged application with the Queensland Government to register the "Prince Charles Lung Transplant Support Group Inc". ( I love that term "inc."). We will then call for nominations for office bearers and get on with it. Second, we are finally getting somewhere as far as the water feature is concerned. I had to seek the support of the head of the Lung Transplant Unit, Dr Keith McNeil, but I expect we will be able to install the unit in the next month and have an official handover.

Want to make special mention of a few people. Phil, a fellow transplantee (just over four years ago) who is experiencing some health problems at present. Phil we're all with you and wish you well over the next few weeks. Also Geoff from Bundaberg, I hope you are hanging in there. And finally I can report that our President to be, Glenda Murray, has recovered well from her surgery and is looking better than I've seen her for a long time.

Anyway, it's showtime so I'm off. Talk again soon.

Ben

Sunday, February 11, 2007

If I lay here

If I lay here
If I just lay here
Would you lie with me and just forget the world?


Heard this song first on "Grey's Anatomy" on the final program of the season 2006 and it has been on my mind ever since. In fact I'm watching a repeat as I write. Obviously a prequel to the new season. As you know there is a certain affinity between me and hospitals and, although my son Paul thinks the show is crap, for me it brings back a lot of memories.

Just yesterday, my daughter Jacqui was visiting and playing a game, "Zuma", on my laptop. I was having a rest in bed at the time and in a half daze could hear various tones emanating from the computer as she played the game and it sounded just like the tones emitted by the respirator keeping me alive in my early days in intensive care immediately post transplant. It was like waking up to (not from) a nightmare. The pitch went higher as she "crashed" more balls and so would the pitch on my lung machine until finally, the air would expel inside my lungs (she's missed the balls) and the tone immediately lowered only to rise again with the next "breath". The mind works in mysterious ways.

I think all of us at times find life so difficult that we would like to just lie down with the one we love and let the world go by.

Forget what we're told
Before we get too old
Show me a garden that's bursting into life


Problem is we can't forget, we do what we're told, and the only garden that can burst into life is the one we create. Have to say, my little garden IS bursting into life. Had a great day today and did something nice for someone who really appreciated it. It's always good to do something nice.

I don't know where
Confused about how as well
Just know that these things
Will never change for us at all


Got no idea what those words mean to the song writer but I'd disagree in that I do believe we CAN change things is we want to. Just got to make some effort.

Anyway I'm rambling and feeling emotional so I'd better shut up and go to bed. Just blame it on my medication. Phil, hope things go well tomorrow.

Ben

Saturday, February 10, 2007

What a week..............

Ben's back.

Yes, just ten days ago I was blogging away saying how bad it had been leaving this thing for two months and suddenly, BANG!, I'm back in hospital, Paul's taken over the blog site (I think he should do it full time he does it so well). My "Half Wrap Fundoplication" has been put on hold and the financial world as I knew it has, well, partly collapsed, for the short term at least, until things settle down. Won't go into the details but let's say we're a bit poorer than we were a week ago and we hope things will get better.

Janyne and I felt we might just sell up everything, buy a 4WD and a caravan (or trailer if you're in the US) and piss off. But of course we won't. Far to sensible for that. Anyway I have my "Fundo" due 2nd March and I am sure that will make things better. Less risk of infection and rejection.

So what's good. Everything is good. Little experiences such as this just bring back the importance of what it is to be alive. Not just exist but to be ALIVE! In the end, no matter how bad you feel, how ill you are, life doesn't owe you anything. No special favours just because you're feeling sorry for yourself. In the end, no one really cares about all that. No one but you can make you better. Only you can make a difference to the way you feel. Thank God your family and loved ones can help you through it. No one likes a pain in the arse ("ass" for US viewers)so think positive and get on with it.

So what have I done?

Well last night around 10.00 pm I made a decision I have been agonising over ever since my lung transplant. I wrote a letter of thanks to the family of the person who donated my lungs. Now to those of you who haven't experienced this, that may appear a simple matter of course, but it is one of the most difficult things to grapple with. Remember someone has died in order for me to live.

I don't feel guilty about that. That person would have died anyway. But imagine how that person's family and loved ones must have felt at the time. To think that various body organs of the one they loved are going to different parts of the country, sure, hopefully saving lives, but how do they know? I, we, who have received those parts and are now alive because of that owe a great debt of gratitude to those donors and their families and to be able to express that gratitude is more difficult than I had imagined but something we all, we transplantees that is, simply have to do when the time is right.

Last night the time was right. One day I may publish my letter. For now I want it to be read by the donor family first. It is for them. No one else. I would publish it only if I felt it could help others like me to do the same; thank their donor families.

But isn't life strange? I got to bed about 11.30pm, woke Janyne and asked her to read it. Here it is, the most emotionally difficult thing I have done in a while, and Janyne's first impression is that I should remove the word "corticoid" and replace it with something the common man/woman could understand. Forget the outpouring of emotions that I have built up over nine months; just concentrate on one word, used twice I must hasten to add, but in the end, just one word. See why I love her so much? She keeps me sane.

So I am feeling positive. The massive doses of steroids (rejection) and antibiotics (infection) leave one a little strange but that will pass. My lung function is better than it has been for a few weeks and everything else seems to be going in the right direction. I have also had a change in one of my immuno-suppressants from Cyclosporan to Tacrolimus. Paul has already explained these drugs in previous posts but all these changes have an effect on one's metabolism and it takes time for things to settle down.

I am back for a check-up on Thursday 15th February and we'll see how we go then.

Well, for now I'll enjoy my glass of wine and then off to bed.

Talk again soon,

Ben

Thursday, February 08, 2007

Good News

I just got off the phone with Ben and he let out the exciting news; he’ll be home this afternoon! They’re just dosing him up with another drip full of drugs, feeding him some grub and then as soon as Janyne arrives he’s out of there!

Whilst on the phone I also got an opportunity to probe into the swap from Cyclosporin to Tacrolimus (see: Hello Tacrolimus). It turns out that Ben’s kidney function had been deteriorating recently, with his blood/sugar levels being close to that of a Diabetes sufferer. To combat this they’ve moved him to Tacrolimus, the main immunosuppressant used in Kidney Transplants, in hope it’ll reverse the effects. It’s only been a day but Ben’s feeling a lot better after the swap, commenting that he isn’t “feeling as nauseous” as before.

The doctors have blamed this recent bout of rejection & infection on ‘reflux’. I don’t know the specifics but I’d suggest that it has something to do with acid regurgitation from the stomach to the lungs (read more here & here). He was of course due to have that operation today however, due to this current setback and the fact the Surgeon is going on holidays shortly it won’t be until early March. The sooner the better I say.

Another blood test scheduled for tomorrow morning will reveal if anything else is abnormal. Luckily he can get that done remotely, rather than having to go into hospital again. Let’s hope its all clear! Although he doesn’t shutup about how beautiful the nurses are he tells me he really doesn’t enjoy being there!


Paul.

Wednesday, February 07, 2007

Hello Tacrolimus

“Who would have thought that all along it wasn’t rejection we needed to worry about; it would be the Great Southern (GTP) share price that’d ultimately kill him.”

Okay, okay, that’s a bad joke but I couldn’t resist. For those of you that are aware of Ben’s relationship with Great Southern (GTP) I’m sure you’ll get it, for those who don’t – it might take too long to explain. Let’s just say, that in a day that could of being disastrous, things actually turned out okay. “Fingers crossed”, as we too often say.

On the health side there are some welcomed developments. Ben’s on the drip and doing well or as Janyne puts it, “he’s full of life and colour”. Of course we won’t know until late Thursday or early Friday, after the blood tests, whether it’s worked or not but all signs are positive at this stage.

I was talking about the ‘balancing act’ in my post yesterday and today the Doctors made some more changes to his medication. They’re out with the Cyclosporin and in with the Tacrolimus. What the? In short, they’ve made some changes to the main immunosuppressant drug Ben’s on. You might recall, ‘immunosuppressants’ are used to prevent the rejection of transplanted organs – in Ben’s case, they stop his body from rejecting the new lungs. I’ve spent a little time on here (the net) reading clinical studies about the difference between both of the drugs. It looks like Tacrolimus, according to what I’ve read, reduces the likelihood of ‘acute rejection’ in transplant recipients. According to wikipedia, Tacrolimus is “more potent than Cyclosporin and has less pronounced side effects”. I’m far from being a Doctor but to me, it sounds as though it’s a good thing.

Here’s an overview of the two drugs and immunosuppressants in general. To find the clinical studies just google "tacrolimus vs cyclosporin" - keep in mind it might take a bit of filtering to find something relevant.

There’s really not a lot else going on. I’ll be back on tomorrow, writing another post and filling you in on where we’re at. It looks like Friday might be the day he gets out. Not a bad present for the weekend.


Paul.

A Bit of Bad Luck

Hello readers! It’s Paul dropping in once more to fill you in on the latest happenings whilst Ben’s away.

Unfortunately, he is back in hospital a little sooner than we expected. The plan was to have the reflux operation this Thursday however, a problem arose in his routine checkup on Monday which meant another unscheduled stay at Prince Charles.

What is it this time? Rejection. Yes, rejection has reared its ugly head again which explains the discomfort Ben has been experiencing the past few weeks. Whilst we don’t know exactly the severity, the doctors believe after a good dose of Prednisolone, administered via drip, he should be emitted this Thursday afternoon (fingers crossed). If the rejection wasn’t enough, they’re also dosing him up on antibiotics to try and fight infection as well. Whoever came up with the ‘one step forward, two steps back’ rule certainly wasn’t lying.

It’s an unexpected knock back and it means that Ben won’t be having the reflux operation this Thursday, as planned. Instead they’re going to let him recover from this first and have pushed the operation back to early March. He’s probably thinking ‘great, another anxious wait.’

With transplants, as with life, there are no certainties. Yes, people have had them before but there is no clear path a patient should take, they’re all different. Some patients feel ‘fantastic’ and thrive from the beginning, some struggle with all sorts of adversities early on and others have patches of great health here and there. It’s very much a balancing act. Doctor’s are constantly balancing the levels of drugs vs the health of the patient, the patients are balancing the ups/downs they’re experiencing and the families go along for the ride. It’s not always easy and that in itself is a reflection of life. Just know we’re all very positive about the future and this is little more than a small setback in the bigger picture.

One thing is for sure; throughout this whole experience I’ve been truly grateful to have had Dad here. I can’t recount the number of times, just this past month, I’ve selfishly picked up the phone and dumped my life’s problems on him and his always been there for me, either with sound advice or a swift kick up the bum (the latter probably being the more needed). I’ve deeply appreciated it and now, after everything we’ve been through, it’s this last couple of months, more profoundly than the others, which have inspired me to be a better/bigger person. Thanks Dad!

Paul.

Thursday, February 01, 2007

Cindy Pics

Following on from my earlier post today, we thought you'd like to see some recent pics of Cindy and here they are..


And another..


And another..


Yes she is cute.

Sweet dreams,

Ben

Time flies when.........

Hello all,

It has been a long time since I last posted something on this site. Almost two months. In the meantime we have seen Christmas and New Year's come and go so I hope you all had a great time and continue to keep your New Year's resolutions.

I had seriously thought about discontinuing this blog as life is pretty much normal these days depending on your definition of normal. However due to overwhelming demand (at least three people have encouraged me to continue) I have decided to go on. Some feedback would be nice.
When my son Paul first started this site, it was to keep family and friends informed about my progress immediately following my bi-lateral lung transplant. It saved Janyne a lot of time on the 'phone and meant she wasn't repeating herself when people rang. It also ensured that the same story was being told to all interested parties.

Longer term, many of you have found it useful in understanding life following major surgery and I know for some, it has provided comfort that the experiences they are going through are "normal" post transplant. There are physical changes or conditions which are directly related to the new organ or indirectly, due to medication. It is a never ending process of trial and error with medication, of managing risk of infection without becoming so afraid that one becomes a hermit, and then there is the emotional side.

For me that is a bit like a roller coaster ride. Some days up and others down, just like most people I guess. Now most of you who haven't experienced major life saving surgery following severe illness would think that life is a ball when one is given a second chance at it and cannot understand that one would feel depressed at any time. Yet it is my experience in talking to others and to Medical Professionals that this is a common symptom amongst transplantees and needs to be addressed. To be honest, I have had those feelings for some time and they make one become lethargic, lazy even, (hence my delay in updating this blog) where one would rather stay in bed (metaphorically speaking) than get up and face the day. Small problems become large ones and there are also genuine concerns about finances and worries about fitness, weight and future medical procedures.

One solution I feel, is to work on one's fitness. I have put on some six kilograms in the past two months (too much food and wine over the festive season and not enough exercise). I haven't exercised as much as I used to due to chest pains which seem to manifest themselves as soon as I do something strenuous. Also, with my left leg now slightly shorter that the right leg, walking long distances is more difficult and tiring. In addition, I haven't been able to use my exercise bike post hip replacement until recently.

Excuses, excuses, excuses. "Enough!" I said to myself last week. "If I want to feel better, I have to work at it". So I'm back on the exercise bike, walking a bit more, doing some weights and I have to admit that I am starting to feel better.

My goal is to get back to 80 kilos and turn some flab into muscle. No doubt the partial wrap fundoplication I will be having next Thursday 8th February (to fix the reflux problem) will help as I will be on "mushy" foods for a number of weeks post surgery and likely to feel "full" with less food intake.(http://www.simonwoods.com.au/reflux.html) Hopefully I will be able to continue my exercise program.

The next step for me is to get the transplant group registered (yes, I haven't even bothered with this, tut, tut!) and get some commitment from the Prince Charles Hospital administration in relation to placement of the water feature we purchased as an anniversary present in September and have held in storage pending completion of renovations at the hospital.

In the meantime, our new "puppy" Cindy is growing up but a delight to have around and all is well with the family. Not looking forward to Thursday but I am sure it won't be too bad and recovery will be swift. I will let you know how it all goes.

Until then, take care.
Ben