Sunday, September 10, 2006

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!

Saturday, September 09, 2006

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. =)

Friday, September 08, 2006

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.

Thursday, September 07, 2006

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”.

Monday, September 04, 2006

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

Sunday, August 20, 2006

It's a small world

I just had to tell you this.

Since I was referred to Dr Peter Hopkins, consulting lung physician at Prince Charles Hospital, back in September last year, there have been quite a number of coincidences involving him. First, his wife Danene is a general practitioner who works at the same surgery as my GP, Dr John Golder, the doctor I have been seeing for 18 years since moving from Melbourne in 1987. Peter and Danene's baby Jessica was originally due on my birthday, 1st June, but arrived via caesarian section on 30th May.

Second, since my surgery on 4th May, Peter has seen my son Paul at the Woolworths Supermarket at Bulimba, a suburb of Brisbane.(Paul didn't recognise him with his street gear on).

Then just a few weeks ago, Peter saw both Jacqui and Melissa, who was visiting from Melbourne, in Oxford street Bulimba but Peter was too embarrassed to say hello as he was in his gardening clothes.

Only yesterday, Paul met a lady on the Esplanade at Labrador on the Gold Coast and through a casual conversation discovered that her husband is a patient of Peter's and is awaiting a lung transplant.

Finally, and this is a true story, Janyne went for her regular bike ride this morning to the Hope Island Golf Clubhouse where she has breakfast with her friend Suzanne. Suzanne had her new puppy with her and some of the golfers came over to have a look. In conversation, it emerged that one of the men was visiting from Sydney to play golf for a few days and it turns out that he is Danene's father, Peter's father-in-law.

Is this an omen or is this Peter's covert way of keeping a watchful eye on my recovery process and making sure I'm behaving myself????

Just for good measure, Dr John Fraser, another consultant at Prince Charles Hospital, has a three year old son. And his name is.......? You guessed it, Benedict John, the same as mine.

Life is full of coincidences.

Bye,

Ben

Friday, August 18, 2006

Back so soon?

We had our two nights at the Sheraton in Noosa, courtesy of Jacqui, on Tuesday and Wednesday of this week. Caught up with George and Wendy from Tassie who were there for the Taxation Institute Conference. Had a great time and the weather was just magnificent. We would love to have stayed longer but holidays will have to wait until some other time.

Received an email from Rebecca who has suspected obliterative bronchiolitis (refer my 9th July post) apparently resulting from her rheumatoid arthritis. I had always thought OB was a common condition following lung transplant and didn't realise it could develop through other medical conditions. I am actually trialing a new drug, everolimus, which it is hoped will prevent or manage this condition. I am one of about 400 transplantees worldwide on this trial program. We won't know for a few years but, if it works, it could mean that, barring complications such as rejection or infection, lung transplantees could go on living for a very long time. Rebecca, thanks for your comment. Perhaps have a chat to your lung physician about this new drug. I wish you well.

We are receiving a very positive response to the fundraising flyer seeking support for a tenth anniversary gift to the Queensland Lung Transplant unit with $400.00 in so far and many promises of more. Considering it's been only a week since the flyer went out, this is very encouraging. Thanks to my brother Rob for his contribution. He felt a donation was better value than buying flowers for me when I was in hospital and I thoroughly agree. Could be food for thought for some of you out there!!!!

I would love to have some feedback in relation to a suitable gift. We hope to have $2,500 to $3,000 to purchase a "thank you" gift to the lung transplant medical team at Prince Charles Hospital. So far a painting or a wishing well has been rejected and it has been suggested that a statue of some sort might be suitable. Can't imagine a "Venus" or "David" achieving the objectives we're seeking however. The theme of the gift should be the giving of life or "new beginnings" and be an inspiration to those involved in the transplant journey be they surgeons and other medical professionals, patients or prospective transplantees and their relatives and friends. If you have any ideas, please let us know by completing the "comments" section below.

Queensland is having a State election on Saturday 9th September. Could we be seeing a new Premier and/or Health Minister at our 10th Anniversary morning tea?

Talk again soon,

Ben

Monday, August 14, 2006

Hip Hop

Good evening all.

Had my regular visit to Prince Charles Hospital today. All results were good but I seem to have a cold which, hopefully, won't develop into anything further. My left hip has been playing up quite badly for a couple of weeks now and Dr Peter Hopkins has finally agreed that the time has come for a hip replacement. The condition is known as Avascular Necrosis, a break down of the bone tissue of the femur (thighbone) and the acetabulum (pelvis) due the long term use of Corticosteroids (prednisolone in my case). Anyway, I was referred to Dr Scott Crawford, Orthopaedic Surgeon, and he has me booked in for hip replacement surgery at Prince Charles on Thursday 7th September.

Yes I know I'll feel better in the long term but I have to admit I'm not really looking forward to surgery again just four months after the lung transplant. However, if I don't have it the whole femur could shatter and I'd be in worse trouble.

The artist Peter J Hill, who painted "Lemon Orchid", (refer 3rd August entry) the painting we hoped to purchase as a tenth anniversary gift to the Queensland Lung Transplant unit, phoned me today. He had just returned from a trip to outback Queensland and said the "Lemon Orchid" had been sold but he'd be happy to paint another similar painting if we're interested. I explained we'd decided to raise some money first and then see what we can buy. Somehow I don't think it will be a painting. Pity, because Peter sounded like a really nice guy (you know he's nearly 70?) and he paints some amazing stuff. Take a look at his website (http://www.pjart.com/index.htm).
By the way, I have no financial interest in Peter's business nor am I on a commission.

Flyers to transplant patients, discussing the tenth anniversary and requesting donations towards a gift, were sent out last Thursday (10th August) so we're hoping we'll get a good response. My son Paul designed the flyer and did a fantastic job. Have a look at it here!

On the bright side, Janyne and I are off to Noosa for a couple of days and catching up with some friends from Melbourne.

Yes, the Porsche Boxter is definitely for sale and is advertised at Carsales.com.au. We've discovered we really only need one car anyway and the money could be better used elsewhere. If you know anyone who may be interested, please send details via the "comments" section of this blog.

Talk again soon.

Bye,

Ben

Sunday, August 06, 2006

Change of plans

Back so soon?

Well we've had a mini meeting and decided that we should raise some money first before purchasing an anniversary gift marking ten years since the Queensland Lung Transplant Unit was formed at Prince Charles Hospital in Brisbane. There wasn't much enthusiasm for the painting I showed you in the last update.

We're looking to raise $2,500 to $3,000 which amounts to about $25.00 to $30.00 per transplantee. There is no reason why relatives and friends shouldn't be part of this as they too have benefited from the fact that their loved one is alive due to the efforts of the transplant team. There are also a number of recipients who had surgery interstate but receive ongoing care at Prince Charles.

Glenda Murray is co-coordinating donations. Anyone who'd like to contribute should make cheques or money orders payable to "Lung Transplant Account" and sent to Glenda Murray, 29 Ballinderry Street, Everton Park, Qld 4053.

Until next time.

Ben