What a great week. And it's only Thursday

Hello everyone,

It's been a great week since coming home from hospital last Saturday. My rejection period appears to be over. Today, clinical tests at Prince Charles Hospital produced the best lung function test yet with an FEV1 value of 3.46. I have had readings of 3.5+ on my home machine but never this high with the hospital's more sophisticated machinery. (FEV1 = (forced expired volume in one second) is the volume expired in the first second of maximal expiration after a maximal inspiration and is a useful measure of how quickly full lungs can be emptied). . Many of you wouldn't blow these numbers.

X-Rays show up lungs in very good condition and all my vitals including kidneys, of some concern last week, are working normally. This is all very gratifying.

Oh, by the way, my left hip is getting better everyday since replacement surgery three weeks ago. So well I'd almost forgotten about it.

To top things off, my older brother Rob and his wife Maureen, who live in Sydney, accompanied by my (also older) sister Marian who was holidaying with them from Melbourne, came over for dinner on Tuesday night. They decided to pop up to Queensland for a bit of a holiday and to see how I was doing. We had a great night and Janyne cooked a magnificent meal as usual. Paul, Jacqui, Jason and his girlfriend Kym were also there so it was a big happy family event.



Sister Marian and brother Rob with yours truly. Yes I had a glass of wine. Just don't tell Dr Peter Hopkins.



From the left, sister Marian, Janyne, brother Rob and his wife Maureen and yours truly.

Yesterday the interstate visitors were due to come back and spend the afternoon with us. Janyne was going to take them for a tour around Hope Island Resort on our golf buggy but the weather set in so they ended up visiting for a couple of hours. This time my younger sister, Theresa, and her daughter, Leah, who I haven't seen for years, accompanied them. They live in nearby Currumbin. Naturally there was a lot of chatting about old times and I thoroughly enjoyed myself.

They all head off home to Sydney (and Melbourne) tomorrow but I am sure we'll see more of each other in future. Have to admit I have never been very close to my extended family but I guess major health events such as lung transplants do make us realise the importance of family ( blood thicker than water and all that stuff). We won't be living in each other's pockets but more regular contact will be fun.

Today we also started the ball rolling with the establishment of a more formal organisation representing lung transplantees, principally in the areas of research about what organisations and activities already exist at The Prince Charles Hospital to ensure that we are not re-inventing the wheel. Janyne and I came away from these discussions with the view that proceeding would be very worthwhile for both current and prospective Lung Transplantees and their close relatives as well as providing support to the transplant medical team where required. We have names of other members who may be interested in being involved in the establishment period and I will be seeking meetings and discussions with them over the next couple of weeks.

We'll keep you informed of progress but if anyone has any ideas I'd welcome them. Just hit the "comments" button below and email me your thoughts.

Tomorrow, we start getting the water feature underway. Everything is ready to go as far as the physical feature is concerned but I am sure there'll be some hurdles with Hospital administration in relation to its position and installation. I don't want this thing tucked into a far corner of the hospital grounds where no one will see it and therefore no one will make a wish and help us raise funds. However, we have some good support amongst hospital staff and even the Health Minister for Queensland, Mr Stephen Robertson, was very supportive at the presentation last Friday, so I'm sure we'll get the job done.

I have waffled on for long enough now so I'll say goodbye. I'll talk again soon.

Ben





Some photos of our newly clipped "god dog" patch and his "mother" Suzanne to leave you with. (He's cute and we can give him back after a nice day's doggysitting)

Home again after a big week

It is amazing how fragile we transplantees can be. A small mistake with medication post hip replacement, and suddenly my body starts the lung rejection process. Quick action by the wonderful transplant team at Prince Charles Hospital and here I am home again on the way back to normal. It'll take a few days still but vital statistics look good.

It was an eventful week with Friday being the tenth anniversary of the Prince Charles Hospital Queensland Lung Transplant Unit. As I was now an inpatient, I joined the celebrations at the hospital with a morning tea attended by over 100 people including present and past members of the Queensland transplant unit as well as a large number of transplantees and their families. The State Minister for Health, the Honorable Mr Stephen Robertson, also attended and I think he was both surprised and impressed with the order of events and the camaraderie that exists between medical staff and patients. It is very much a big family.

I was honored to be asked to make the presentation of the gift from transplantees and from some of their families whose donations were gratefully acknowledged. In all some $3,000 was raised, an amazing result considering there are only some 60 - 70 transplantees still living since transplants began in Queensland (out of about 110 operations). This should cover both the cost of the fountain and installation. Sincere thanks to Eleanor Kerr, social worker at Prince Charles, fellow transplantees Glenda Murray and Phil Griffiths as well as my wife Janyne and children, Paul and Jacqui, without whom this would not have happened.

Here we have two of the transplant team members, Dr. Fiona Kermeen (left) and Dr Peter Hopkins, both of whom look after me so well, accepting a token of the gift to come. It has a replica of a plaque on the left hand side and a photo of the water fountain on the right. Unfortunately the quality of the photos isn't great but I am sure you get the picture.

Guess who? Not bad for a guy with a crook hip and mild lung rejection ????


The plaque says, "Celebrating The Tenth Anniversary of The Prince Charles Hospital Queensland Lung Transplant Unit Donated with Gratitude by Transplant Recipients, Families and Friends, 22.09.2006".

In my presentation I made reference to my thoughts of creating a more formal group or association made up of existing and prospective lung transplantees and maybe their families and friends with a proper committee and better organisation so that future events of this nature can be more efficiently managed. There is no pre-determined agenda here as this will evolve with time and consensus but some broad aims could be to provide moral and, if possible and appropriate, financial support to past and prospective transplantees and their immediate families, raise funds to assist the transplant team in whatever way is deemed appropriate, create greater awareness of the benefits of being an organ donor, organise some fun tours and events etc (after all, life after transplant should be fun), and generally keep members informed about how to get the best out of their new lives.

Health Minister Stephen Robertson was so impressed by this idea that he approached me after formalities and stated that, if we can put this concept together, he would pledge up to $3,000 in funding, (based on a dollar for every dollar raised for the gift to the transplant team). This level of support is very gratefully appreciated and I will be writing to his office this week accepting his conditional offer on behalf of the transplant recipients and committing to report on progress.

Over the next few days I will be speaking to various hospital staff to gauge their thoughts and ideas as well as to find out what similar groups of this nature already exist. After all, we need to be mindful that we don't re-invent the wheel. We will also get a feedback form to as many current and prospective transplantees as possible to gauge levels of interest, organise some meetings, seek nominations for a committee, draft a mission statement and develop a constitution. If anyone out there has any ideas or comments in this regard, I would welcome them. We want this to be fun and not too formal but at the same time it may pay us to have the association registered as a charity if we're going to look at fund raising down the track so we need some formality involved.

Keep watching this blog site for details. Thanks again in my absence to my son Paul who does a far better job of all this than I do.

Rejection

What was meant to be a routine checkup has found Ben back in hospital for at least the next three days. The results of a blood test, as well as the lung function test, taken this morning prompted the transplant doctors to perform a bronchoscopy to discover the cause of abnormalities they'd noticed. Later this afternoon the biopsy confirmed what they had feared; there were signs of rejection.

Initially they are unable to tell what caused it. However, they suspect a mixup in medication, which saw Ben taking 100mg of Cyclosporine instead of 200mg, may have been the culprit. Irrespective of how or why the most important thing now is to get him better. How do they plan on doing that?

The next step is to get Ben hooked up to a Prednisone drip. For those of you who don't know, Prednisone is a steroid that is used as an immunosuppressive. In Ben's case it is vital they kill the immune system which is causing his body to fight against the healthy donor lungs (remember, Ben's body naturally sees the donor lungs as a foreign body). The plan is to administer this type of treatment over the next three days; the chance of success is good, around 85%.

The comforting news is that the doctors believe it will be a success. We're all very confident in them and Ben's ability to beat this and it's a nervous, fingers crossed, wait until early next week when we'll know.

I'll keep you informed!

Paul.

He's Home

A quick post to let you all know that Ben did return home today as expected. The kidney issue turned out to be a something minor that they're going to keep an eye on. Ben should be good to lose the crutches in around six (6) weeks and by the three (3) month stage he'll be as good as new.

It's good to have him home!

Rebuilding the Man: Day Five.

Today brought some exciting news. Ben could be out of hospital as early as tomorrow morning if all goes to plan.

Today he successfully completed a number of tests designed to gauge his ability to cope at home without the help of the hospital staff. One of the tests required him to walk up a number of stairs using his crutches. The other was to simulate getting in/out of a car. Apparently he passed with flying colours, after all I hear he is pretty handy on the crutches but still has trouble getting back into bed!

With so much good news we were bound for a setback sooner or later. Yesterday the doctors noticed an abnormality in his kidney function. There is a possibility its nothing or it may be a sign that there is an infection, which could be quite serious. They've done some further tests and we were expecting to know either sometime this afternoon or tomorrow morning.

Fingers crossed it’s all clear!

Time to Reflect

When I visited Ben on Saturday I noticed a girl sitting by herself in the lobby area of the hospital. As I got closer to her I saw that she was obviously upset and had been crying. It made me think back to the last time we were here and how different our emotional state had been.

To me there is a comfort in having been through the transplant experience. I now know how strong Ben is. It wasn't as though I had ever doubted his strength, or his ability to make it through, but there were times during that period where emotion and circumstance took over. I recalled myself being in the position of that girl. The person tucked away, alone, upset and in tears, trying to deal with the reality of having your loved one on life support in ICU. It's an overwhelming feeling of helplessness that you can't budge and one I'm sure is unique to people in that position.

This time around it's noticeably different. You've endured something so critical and involving and you've made it through to the other side. It's as if this time it's merely a walk in the park, a warm down after already winning the grand final. You're forced to remind yourself it's not, that anything could happen. That the wound could lead to infection or that the hip could pop back out. You remember that Ben isn't just an ordinary person, he's a double lung transplant recipient and that carries extraordinary risks. And that's how life has become; extraordinary.

I look at Dad (sorry it's not that easy to keep referring to him as Ben) and I see hope. I see in him what many people should see inside themselves; the opportunity life is! I'm reminded how close we were to losing him and the miracle a transplant brings. And now, when I see him lying in hospital after receiving a new hip, it's just one last stepping stone to seeing the dream fulfilled. Up until now mobility had been a factor, in a few months it won't be. Imagine how great a gift such as this could be.

When I left the hospital that day I came across a lady we know only as “Joanne's Mum”. Joanne, her daughter, is only 16. She has an extremely rare heart disease that there seems to be no cure. When we first met her she was in ICU after having 8 operations in a period of 4 weeks (if I remember correctly). This time, she's experienced difficulties, blood clots have developed in the arteries that connect the heart to lungs. Her lung capacity is at a shockingly low 30%. This week she goes back into surgery in an effort to save her lungs from collapsing. I don't quite know the details but by looking at her it looks certain she doesn't have long to live. Poor Joanne, a 16 yr old former track champion who it seemed had her whole life ahead of her only to be left with this!

There has been a connection formed between our families. One that could only be formed through the understanding of what each has been through in ICU. It becomes a second family, a community of people you feel for. Ask Mum & Dad (Ben & Janyne), it's not easy for them or the nurses to see former patients come back in. It may be just a routine checkup but there's always the fear it could be something worse, a complication. It's not just the fact you feel for them but it's the reality that next year, next month or next week that person could be you or your loved one. Life can be given and so easily taken away.

So I'd be lying if I said I wasn't nervous about Dad having this operation, I was. Put simply though.. the opportunity outweighed the risk!

Rebuilding the Man: Day Four.

Another day goes by and Ben's back at it making progress! "No rest for the wicked", as they say. Today he was up and about on his crutches, terrorising his fellow ward-mates as well as the defencless nurses. He has no trouble getting out of bed, it's getting back in that's the hard part. He says it best, "Once I'm up, I'm up." It seems he just waits around for someone to help him back into bed (Janyne, watch out! This will be your role soon!).

On other good news, the pain has subsided as well. He only has limited movement in his left leg so the process of getting himself mobile does cause some pain & discomfort. Apart from the profanities he's doing fine! (Just joking. I haven't heard one single swear word... yet!)

The chest X-Ray came back clear and there are no signs of infection so far. He's vitals, progress and general attitude at the moment are all excellent. Whilst this is to be expected, it does come as a welcomed relief. At this stage he looks set to return home on Thursday, only just a week on since the operation.

Rebuilding the Man: Day Three.

Ben's up and at them today! Yes, he's been out of bed with the aid of the walker. It seems these exercises are measured by being able to make it to the shower, in which case he was successful today. Much to his pleasure I would suspect, as he was complaining yesterday that the sponge baths really weren't doing it for him!

It's great news though and the more mobile he is the quicker he'll both regain body strength and help the hip heal! The process of healing seems to be a lengthy one. He'll be on his back for the next couple of weeks, only being able to bend over to an angel of 45 degrees. After the 6 week period this will stretch to 90 degrees for around the next 3 months. He'll have to be very careful how he interacts with normal tasks, such as getting into bed or sitting in a chair. If he bends past a certain point the hip could pop out resulting in another operation. It's not like a dislocation where they can simply "pop it back in".

I won't get into the nitty gritty of it, there's far too much to remember. That is why they're sending out an occupational health worker to assess the house. They'll check everything from the height of the bed to the access in/out of the shower, etc. They'll then make recommendations on what might need to be done in aiding Ben further mobility around the house.

On top of this he won't be traveling as a passenger in a car for the first 6 weeks and it's another 3 months until he'll see the drivers seat. He's getting rid of the Porsche though, so now he might look at driving as a chore instead of a pleasure - it might not be so bad being chauffeured!

Okay, enough of the banter and back to Ben! He had a rather rough night due to, again, another meal mixup. Last night the chicken broth he thought was gluten free, actually contained gluten. Remembering that Ben is a celiac, it's suffice to say he didn't have a pleasant evening.

Tomorrow sees a return to the normal staff roster which means more physio. Hopefully he'll be having two sessions rather than the one a day he's been seeing so far. Again, just to make the point, mobility is the most important thing! He's also due for a chest xray (to make sure those lungs are still doing well) and a few other bits and pieces as well. All in all he's traveling just as expected. It's a relief to find out this isn't the two steps forward, one step back, type recovery the transplant seemed to be!

Rebuilding the Man: Two days on.

As suspected Ben is feeling a lot better today. It turns out he was supposed to have had a liquid meal, instead of the regular meal, for dinner last night. This would have contributed to the nausea.

The pain has subsided from yesterday. He's off the morphine drip now and just using panadol as pain management. There is still pain however, it's nowhere near as bad.

They've made him get out of bed for the first time post operation. He was standing with the aid of the walker with the plan to make it to the shower. Due to the diziness he was experiencing he wasn't able to make it. Apparently this seems to be the case with most of the patients. He'll try it tomorrow, hopefully with better results.

There was some concern before the operation about how Ben's lungs would hold up. Operations such as this put a huge toll on the body and considering he has only just had the lung transplant, there was sufficient (albeit minimal) risk involed. At this stage he looks to be doing fine. His vitals, whilst a little higher than normal, are standard for this type of patient and there have been no signs of infection (the primary worry) at this stage.

Tomorrow he should be up and walking around. =)

Rebuilding the Man: A day on.

Ben was in quite a bit of pain today after having the hip replacement yesterday. He is also suffering from nausea which doesn't help. There are two (2) other hip replacement patients in his ward who suffered from the same thing only to come good the day after. Let's hope he's in the same boat.

Reminder: 10th Anniversary Donations

Just a quick reminder that donations for the 10th Anniversary of the Queensland Lung Transplant Unit will need to be in soon. The ceremony takes place Friday 22nd September, just two weeks away!! You can now make donations by direct debit on the details below. Jacqui and I both made our donations today. It's a great feeling knowing you're doing something for such an important cause. Thanks to all of you who have made donations thus far!

Bank: Credit Union Australia
Acc: The Lung Transplant Account
BSB #: 804050
ACC #: 30333222


Paul.

Rebuilding the Man

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

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

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

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

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

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

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

Paul.

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

Four months on

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

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

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

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

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

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

In the meantime, take care.

Ben