Year End Reflections

It's very important to me that as the year closes I thank everyone for all the help and support I have received over the past 6 months, and in particular over the past month while I have been waiting in hospital.

I've received best wishes, emails and phone calls from all over - Australia, the UK, the US and across Canada. Friends and neighbours have been incredibly generous in helping Anne-Marie, Kate and Steph with everything from soup, chicken pot pies, baked goods to snow shovelling and Christmas tree erection!

Visitors have brought books and goodies to share and sometimes they have just come to sit knowing that I can't talk for too long.

My sisters came from the UK for 10 days just before Christmas at great inconvenience to their families and made a huge difference.

To all of you I say a heartfelt thanks and I hope that one of the blogs in the New Year will be to let you know that lungs have arrived

Best wishes to all for 2009!


I

The Twelve Literary Days of Christmas

Kate gave me an intriguing gift this Christmas - she called it The Twelve Literary Days of Christmas.

Here it is

The Twelve Days of Literary Christmas

On the first day of Christmas, my daughter gave to me
A classic and a festive Treasury.

On the second day of Christmas, my daughter gave to me
Lots of gruesome blood; and a classic and a festive Treasury.

On the third day of Christmas, my daughter gave to me
Wilde Tuscany, lots of gruesome blood; and a classic and a festive Treasury.

On the fourth day of Christmas, my daughter gave to me
Books that start with ‘F’; Wilde Tuscany, lots of gruesome blood; and a classic and a festive Treasury.

On the fifth day of Christmas, my daughter gave to me
Physics and a Mole; books that start with ‘F’; Wilde Tuscany, lots of gruesome blood; and a classic and a festive Treasury.

On the sixth day of Christmas, my daughter gave to me
Idylls of the Opera; physics and a Mole; books that start with ‘F’; Wilde Tuscany, lots of gruesome blood; and a classic and a festive Treasury.

On the seventh day of Christmas, my daughter gave to me
Purple Murasaki; Idylls of the Opera; physics and a Mole; books that start with ‘F’; Wilde Tuscany, lots of gruesome blood; and a classic and a festive Treasury.

On the eighth day of Christmas, my daughter gave to me
Famous books of women; Purple Murasaki; Idylls of the Opera; physics and a Mole; books that start with ‘F’; Wilde Tuscany, lots of gruesome blood; and a classic and a festive Treasury.

On the ninth day of Christmas, my daughter gave to me
More books of women; famous books of women; Purple Murasaki; Idylls of the Opera; physics and a Mole; books that start with ‘F’; Wilde Tuscany, lots of gruesome blood; and a classic and a festive Treasury.

On the tenth day of Christmas, my daughter gave to me
Itty bitty classics; more books of women; famous books of women; Purple Murasaki; Idylls of the Opera; physics and a Mole; books that start with ‘F’; Wilde Tuscany, lots of gruesome blood; and a classic and a festive Treasury.

On the eleventh day of Christmas, my daughter gave to me
Very different memoirs; itty bitty classics; more books of women; famous books of women; Purple Murasaki; Idylls of the Opera; physics and a Mole; books that start with ‘F’; Wilde Tuscany, lots of gruesome blood; and a classic and a festive Treasury.

On the twelfth day of Christmas, my daughter gave to me
Blinking Sherlock Holmes; very different memoirs; itty bitty classics; more books of women; famous books of women; Purple Murasaki; Idylls of the Opera; physics and a Mole; books that start with ‘F’; Wilde Tuscany, lots of gruesome blood; and a classic and a festive Treasury.

Lots of gruesome blood turned out to be Victor Lam's award winning Bloodletting and Miraculous Cures, and some of the others have included a book of Alan Fotheringham's essays, Hamlet, Lord of the Flies and Pride and Predjudice with more to come!

All of this, plus I'm halfway through Michael Chabon's The Yiddish Policemen's Union. So I have more than enough to read as the wait goes on.

An Accident

While I was trying to switch over my masks on Saturday night I lost consciousness and fell and banged my head on the bed.

I'm not sure how long I was out. My room mate opposite called the nurses and they got me back on oxygen.

I was bleeding a bit at the back of my head so they took me for CT scan to check for internal bleeding. Nothing unusual so no further action and they let me sleep.

I think it was a combination of standing up too quickly and not getting the oxygen sorted out promptly that caused me to faint.

Today - Monday - the respiratory technician has installed a three way valve so that I can switch back and forward among the nasal prongs I use when sitting, the face mask I need when moving around, and the humidified air for sleeping. This should make it a lot easier.

So - no lasting impact - just a warning from the nurses and the docs to be more careful

The Best Christmas Ever

I can vividly remember as a 5 or 6 year old listening to a BBC radio piece about kids who had to spend Christmas in hospital and thinking how awful that must be. Imagine no parents or brothers and sisters to wake up to and open presents with, no special breakfast, no playing together!

Fast forward fifty five years to Christmas 2008 and I'm spending it in hospital. And this was the best Christmas ever!

Anne-Marie, Kate and Steph prepared the Christmas meal at home; roast turkey breast, stuffing, roast potatoes, roasted root vegetables and brussels sprouts, with smoked salmon, rye bread and capers as a starter, and my sister's plum pudding smuggled in from the UK as dessert.

They packed it all up in 2 Coleman hampers, added a laundry basket for the presents and a tiny 200 ml bottle of champagne (among the four of us) and carted all this up to the ward in a wheel chair where we had a great picnic! Thank goodness the bed next to me was empty as it was turned into the serving buffet.

A truly memorable Christmas dinner!

World First at Toronto General

Back in August I wrote about the ex-vivo pilot project that was being developed. This link takes you to a press release issued last Thursday on the successful outcome of the first transplant using this technique.

http://www.tgwhf.ca/mailings/news/2008-12-19.asp

It received extensive coverage on TV and radio last week so you may have already caught the item. Needless to say Andy Dykstra, the transplanted patient, is over the moon about the results and I wish him continued success in his recovery.

I have signed up for the pilot too so I hope this means I will be up soon!

Life Lived Under 10 Tiles

My life for the past three weeks has been lived under 10 ceiling tiles, one with a piece out of it. Two walls of curtains, the back wall of equipment and thankfully a big window looking at LuCliff place complete the picture.

It’s a ward of four beds and, although I thought I’d prefer a semi-private room and in fact signed for one, none was available when I was admitted and now I’m quite content to be here.

Today I become the dean of the ward – the Tibetan guy kitty corner to me goes home after 2 months. I will also lose the South African guy next to me tomorrow as he goes home.

The bed opposite me rotates occupants more. We have had nine folks through there in 20 days and the latest occupant look really young. I’m told that thoracic surgery closed on Friday for two weeks so maybe that will mean fewer new admissions and the ward will be quieter over the holidays.

I have had a brief respite from this space when I was taken to the Patient Court on the 4th floor earlier in the week. It’s a big airy space they use for receptions, concerts etc. and a place where patients and their families can get away from the wards and relax.

Being wheeled there in a chair reminded me of what it was like as a young kid – all I could see was from the perspective of a four foot tall person so each countertop was a surprise.

Week 3 in Toronto General

It’s pretty much confirmed, barring a dramatic turnaround, that I’ll be in here until I get transplanted.

Even though the underlying fibrosis seems to be at about the same level and doesn’t seem to be progressing too fast, the blood clots in both lungs have reduced even further my ability to take up oxygen. This means being on six litres of oxygen at rest and 70% to 90% pure oxygen with a full mask if I’m doing anything that requires effort. At night I’m on a mask with slightly heated, humidified oxygen which is quite a relief after a day of cool dry oxygen blasting up my nose to the point that I can’t hear well.

Even the most normal of activities are challenging. Turning over in bed is a two-stage activity - first onto my back – then rest – then on to the other side and catch my breath.

I’m getting used to the daily poking and prodding. The morning begins at 6.45 with the blood nurse taking a sample. If they are good, they can take it and I hardly wake up, just a grunt here and there and as long as she guides my finger to press on the spot I’m back to sleep in 30 seconds.

Hospitals are ideal bug breeding grounds so I’m now on a prophylactic dose of a drug to prevent fungal infection.

When I ask about the likelihood the clots will be dissolved by my body the answer is it depends on how they are “organized”. I’m told that there is a chance that some might have become calcified which I take it is not good.

Bed Management

When you live in a bed for a week, bed management is important

Things accumulate; well meaning family and visitors bring stuff – food, magazines, newspapers, technology, clean underwear, slippers that you forgot you had, enough hand cream to lubricate Mimico etc.

Then there is the three times a day visit from food services when they deliver The Tray. It’s not called breakfast, or lunch or dinner – it’s just called The Tray. If you don’t consume everything on The Tray and decide instead to keep that Jell-O Chocolate pudding for a later treat, or you decide the banana could do with an extra day of ripening to lose its green tinge, then you have more stuff, some of which can roll around instead of staying put.

Mind you there are stash places. Your bedside cabinet, under the pillow, in the sliding tabletop with the pop up mirror, but remembering where you put stuff, and being able to reach it takes more recall than I sometimes have, under the circumstances.

The daily sheet changes help although yesterday we threw my glasses out with the dirty linen and only caught them as they were being carted off to the laundry I couldn’t have imagined that. Blind and breathless!

There are however advantages to living in a bed for a week and my number one pleasure is the guilty bliss of peeing in bed. There is nothing like waking up at 4 am and knowing you don’t have to (can’t) struggle out of bed so you reach for the jar. Ahhhh!

A Week In The Hospital

Last Monday, after a difficult weekend when I couldn’t really get out of the house either day because increasing shortness of breath, I contacted the Transplant Team.

They recommended I go straight to Emergency where I was admitted. It is now Sunday evening and this will be my seventh night here.

After many tests, including a CT scan with injected dye, they determined I have several blood clots on both lungs. The rest of the week has been constant intravenous heparin drips and higher than normal doses of Coumadin to try and raise the level of anti-coagulation in my blood to therapeutic levels. This has proven a challenge; one day the levels seem normal then the next day they drop. Who knows why but I’m staying off green vegetables for the time being.

The physical manifestation of all this has been further deterioration in my breathing to the point where I can’t walk to the door of the room without stopping to catch my breath. Taking a shower is a major undertaking and one that now I cannot manage on my own.

This creates problems for the Transplant Team. I was listed as being able to take either two or one lungs, the advantage of only one lung being a shorter and hence less challenging operation. With bilateral blood clots I think this means I need two.

I think it also means I’m here until a lung comes. I can’t imagine being able to manage at home with this severely curtailed level of functioning. But things can change – the clots could clear and I could regain more lung capability as a result.
That could mean I am able to go home with the required level of support.

The Beard Has Gone

After 2 weeks and some careful trimming it was beginning to look half decent, but alas it had to go. Victim of the need for a better fit between face mask and face. (I think the use of the word face is superfluous here as a mask over covers the face, but I guess we are conditioned by American football usage)

I'm not overly upset; it was scratchy and still required daily attention so why not shave the whole area and be done with it.

Getting a Mask to Fit

As I mentioned earlier have moved up to a non-rebreather mask (NRB) to provide higher levels of oxygen. But this requires a airtight fit between my face and the mask - and the respiratory therapist tells me my nose isn't big enough and that I leak out the top.

So, the choice is clear - no it's not have a nose job - it's retrofitting the mask with an additional band of elastic plus some self-adhesive foam, like the stuff you put in the heel of your shoe when it's too big.

So now I'm airtight and able to breathe and exercise much better!

Trapped in an elevator for the disabled

One of the interesting first hand observations I am able to make as push my walker and oxygen bottles around the Toronto is the extent to which our built environment accommodates the disabled.

My sense is we have made great strides in making accessible places that weren't originally designed that way, and in designing new buildings that are immediately easier to use.

Now, we all have our pet hates. Mine is that building on the south west corner of University and College that use to be called the Hydro Building. As you stand on the street and contemplate how to get in your choice is descending into a pit of a courtyard that looks like the contemporary version of a dry moat and getting an elevator up, or climbing a formidable flight of stairs to a circular paltform outside the building that is likely to get you blown away on anything but a smoggy, still summer evening.

Retrofitted buildings have their challnges too. Even though they have the Ramp, or the Elevator it is often quite a walk away from the straight line from where you are to where you are going so one certainly gets exercise.

I recently had the delight of getting stuck on a elevator for the disabled because the operator didn't know ho to operate it. It wasn't even a full floor - just a little itty bitty thing that was designed to take me up half a level in the TD Centre. It barely fitted me and the walker and it thankfully had a window in the door so I could contemplate my fate and exchange hand signals with the attendant as she struggled with the controls. So I sat there on the seat of the walker for some time and tried not to think of the bathroom.

Tough Week

It started last Friday with me having difficulty completing my exercise program. It continued through the week to the point that I had to cut back to 1 mile an hour on the treadmill and even then I can only manage 10 minutes. Strange how in just a few days things can change for the worse.

We are not sure why - I don't have an infection or any other obvious reason for the decline - except for the disease itself making its unpredictable way through my lungs.

The solutions are doubling my predisone dose, weekly rather than monthly monitoring and a new mask with a bag attached that can deliver up to 90% pure oxygen. We shall see if all these interventions slows things down or maybe even improve the situation a little.

On a lighter note the votes were in favour of the beard so it stays. Trouble is it is so grey that it'll be while before anyone notices!

To grow or not to grow? - please vote

A few of the folks waiting for transplants have decided not to shave until their new lung comes (most of these are men) so I'm considering doing the same.

One guy even got his call after only three days of growing his beard so I'll try anything to hasten things along.

But there are some dissenters in my family who remember the last time when I moaned incessantly about the itching for the first two weeks.

So please vote - yes or no. I'm already 3 days into it and if the decision is no then I'd like to look half decent by the weekend!

Cats Know

Being around the house more than in the past has some advantages and disadvantages. Apart from driving Anne-Marie to distraction at times - which I guess is a disadvantage to her, I get to observe the cat more than I otherwise would.

This one, China, has been with us at least 7 years and has never been a particularly cuddly mog, except when she needs feeding. But I've noticed a change in her over the last few weeks. She seems to want to be around more and sleep close to where I am. She even deigns to sit on my lap, something she rarely did before.

I've read somewhere that pets are sensitive to changes in their owners (or captors as cats would have it). And there is a growing body of anecdotal data suggests time with a pet may be “as powerful in the person’s recovery as the medical treatment,” according to the American Humane Association. If you Google this topic there is a ton of stuff on the human health benefits of having a pet.

So I will continue to bond with China and hope she helps.

Bad news comes in threes?

It's been a tough couple of weeks. First a break in on Halloween where they took a couple of laptops, all my cufflinks and watches, and some jewellery. We are still "finding" stuff that's gone missing.

Then I found out I need a root canal - deep joy.

But the more difficult event is the rapid decline in my breathing over the last week. It's most notable on the treadmill. I used to be able to do 20 minutes at 1.5 miles an hour and keep my oxygen saturation above 90%, Now, even with a new mask that delivers up to 90% pure oxygen to me I can't do 10 minutes without the numbers dropping to 86% which is too low.

So we are working to adjust my program - more bike which I can tolerate - and less treadmill.

The colder weather doesn't help - the first sharp intake of cold air promotes a coughing fit that can sound like I'm losing everything!

I had my monthly clinic a week early yesterday and I let the docs know about the change in my condition. They understand the urgency and made the right noises about me being a priority but of course they can't make promises.

I've had my flu shot and I am trying to stay away from gatherings where someone or several folks have colds. A bout of pneumonia at this stage would be a disaster.

Now's the time to grit my teeth, focus on staying healthy and, if it's not important, let the rest ride.

How is the Lung Transplant Program doing in 2008?

All I have to go by are the numbers. The statistics published by the Gift of Life Network show 67 lung transplants year to date. In 2007 there were 99 and in 2006 there were 83. At this rate the numbers will not exceed 2006.

Supply plays a major role in these numbers - which raises the question of donor registration and whether the Province should enact opt out legislation.

Opt out legislation would establish a "presumed consent" organ donation system. All adults in Ontario would be considered organ donors unless they specifically opt out of the program. This is the exact opposite of the current system in Canada where you have to specifically agree to be an organ donor. As a result, a huge number of organs go unused after death, and people die waiting for a donated organ that could save their lives.

In reading the comments to recent press articles, those against presumed consent out number those in favour by 2 to 1. The biggest concerns seem to be "I don't trust doctors - an unscrupulous doctor could snatch an organ before the donor is dead", "the government should stay out of my life" "People should be allowed to pass away peacefully" and "universal healthcare is not a right to live forever".

What do you think?

The Five Month Mark

Next Monday marks 5 months on The List.


I continue to exercise 3 times a week but as I said in an earlier post, I now have to use a mask to get sufficient oxygen to stay above 90% saturation, particularly on the treadmill. I've also had to cut back to 1.5 miles an hour from 1.8.

Over the five months I figured I've biked 53 miles and walked 31 miles.

My breathlessness is more noticable now - not sure if that's connected to the change in weather although the Fall this year has been relatively benevolent. I think it's just the disease progressing. It certainly slows me down a great deal and the physiotherapists are constantly reminding me to practice energy conservation. This means thinking out ahead of time what's the most energy efficient way of living your life. For example how you dress - I've found that hopping on one leg while trying to get the second leg in the pant hole is not very energy efficient. Lying on a bed and sliding into your clothes is - as long as you can stay awake through the process and not get found snoring with only half your pants on.

Fixing the Hole in My Leg - Part 2

The treatment for the cellulitis turned out to be intravenous antibiotics for a week which thankfully were administered by home care (after the initial dose as an in-patient).

It's quite the undertaking - two plus hours a night sitting with a drip; then disconnecting tubing while leaving the needle in and hoping that the site will last another day. If it doesn't then it's another go around with the nurse the next night to find a suitable site and tape everything in place.

The morning shower becomes an interesting undertaking. I was advised to cover the leg wound in Saran Wrap. Then I had to cover the needle site in Saran Wrap. Apart from requiring an industrial sized roll of Saran, I entered the shower every morning looking like something from a David Cronenberg film and emerged a soggy, dripping mess.

The treatment however was very effective. The antibiotic they used was heavy duty and my leg was feeling better within three days.

Never having had home care before I was impressed with the service. Someone arrived ahead of the nurse with boxes of stuff and a IV pole and an IV machine to meter the drip.

The nurses I had (2) were very different and diverse. Both had been here 8 years - one was an Iranian who was a trained nurse back home. The relief guy on the weekend was an Angolan-trained pediatrician of some 4 years standing who was interning here as a pediatrician to gain his Canadian qualifications. All of which made for some interesting discussions.

The wound itself is shrinking - but very slowly. It will be 7 weeks this Sunday since the injury and at this rate it will take several more weeks before I can say it's really healed.

Fixing the Hole in My Leg

I felt such an idiot for tripping and falling into the door handle of the car on September 7th that I didn't post anything here about the accident.

It is a nasty wound, about 2 inches by 1 inch and shaped like a crescent moon. It is also deep because I rubbed my trouser leg when it happened and all the skin and flesh came off on the inside of my pants. I thought it would heal, albeit slowly, and the emergency folks at Toronto General said there was no skin left to stitch so here's a tetanus shot, dress it daily and be prepared for a long healing process.

That was 4 weeks ago and it isn't much better. Not only that, an infection has spread up my leg through the lymph system causing sore, red blotches and making it difficult and painful to walk. So after a quick visit to my family doctor yesterday it was back to for a second time to TGH emergency last night where they told me it was cellulitis and ordered up an intravenous antibiotic. (My average wait time at TGH emerg is now 5.25 hours)

The transplant team also swung into action today and are considering a coordinated intervention that might include broader coverage on the antibiotic front, wound cleansing - can't wait for that! - and plastic surgery. My guess is I won't be chosen for a transplant even if something comes available until this infection and wound are cleared up.

So moral of the story for me is call for help early and don't assume things will get better on their own.

Status Change

In the transplant program here in Toronto each wait-listed person is classified as either Status 1 or Status 2. I have been Status 1 up till now - which I believe means relatively stable and less urgent.

As a result of my last 6 minute walk test my status has been changed to a 2. Practically speaking that means if a lung becomes available that fits two candidates - a Status 1 and a Status 2 person - the Status 2 person gets it. So this comes under the category of good news bad news. Good news that I have a degree of advanced standing and bad news that I'm getting worse and need it!

Graduating to a Mask in time for Halloween

I've mentioned before the contrasting affects of my improved level of fitness over the last 12 weeks set against my invetable declining lung capability.

One result is that I have had to start using a mask instead of the nasal canulae when I use the treadmill and the bike. Most people, me included, breathe through the mouth when exercising and that cuts down on the oxygen that comes through my nose. The mask concentrates the supplemental oxygen and keeps my oxygen/blood saturation much higher. As a result I can exercise longer and feel less tired at the end of the session.

Wearing a mask cuts down on conversation unless the person you re talking to is used to interpreting muffled wheezes so that's also a benefit. It's suprising how much talking while exercising reduces my numbers.

Delroy the Delivery Guy

Every Wednesday and Thursday Delroy tops up my oxygen tanks - the big base tanks of liquid oxygen that sit in my office and at home. This can't be easy work given the size of these things, the rigamorole he goes through to get the office tank up to the 16th floor of BCE Place and the fact that he is working with a liquid at minus 183 degrees Celcius.

Delroy looks a fair bit lighter that the tanks are but he is ever cheerful and, as it turns out, not just interested in getting me oxygen on time but is also very concerned about how his "patients" are doing.

The other day he called ahead as usual and asked how I was doing and I responded that I was half empty and needed a fill up. Turns out he really meant "how was I doing?" and encouraged me to keep positive and keep active. Apparently he regularly reminds his patients of this. Great delivery guy!

Two Fascinating Pilot Studies

One of the challenges with lung transplants is the low percentage of available lungs that are eventually transplanted. World-wide that percentage is only 15%. In Toronto it's higher but still below 35%. By contrast, that number for kidneys is 70%.

Toronto General Hospital is a world leader in trying to improve that percentage by both improving the preservation and preparation of suitable lungs prior to implant and by "recondtioning" lungs that don't meet all the standard criteria for acceptance.

A new technique using Ex Vivo (outside the body) Lung Perfusion is being tested in Toronto and all the patients on the list are being invited to participate in two studies.

The ex-vivo technique involves removing the lungs and ventilating them with a machine while perfusing them to cleanse them and help the lungs to repair damage naturally. This is all done at body temperature which is a big difference from current procedure. At the moment lungs once they are removed are preserved awaiting implantation in 4 degree solution. This shuts down cellular activity and prevents natural regeneraton and repair.

The first study of three patients involves bi-lateral transplants where one lung is preserved the usual way in 4 degree solution and the second is perfused at body temp for 2 to 4 hours before implantation. They will then see if there are any differences between the two lungs that shows perfusion improves acceptance and healing.

The second of 22 patients involves using lungs that don't meet current standards and perfusing them at room temp to see if they come up to standards. If they do they are used. If not they are discarded.

This opens up a potential whole new world of reconditioning body parts or a kind of "body shop".

The video we were shown was quite fascinating. The naked lungs sit in a glass or plastic bubble device looking all the world like a large turkey hooked up to a ventilation tube. They "breathe" as the perfiusion takes place and apparently 2 to 4 hours are required to demonstrate that the perfusion has worked or has failed to improve lung functioning.

TGH is a leader in this technology and we are all excited by the possibilities it opens up - better implantation results and a larger supply of potential lungs.

At the personal level it means that if I am accepted into one of the trials, it will improve my chances of getting a transplant earlier.

The first trial of 3 seems to me to be less risky than the larger trial. In the first trial they will be using fully acceptable lungs and just preserving them using two different techniques. In the larger trial they are using sub-par lungs that have been reconditioned and there is a chance that reconditioned lungs that look OK after perfusion still fail after implantation. So we have a decision to make after we review all the details and talk to the doctors.

A Two-Tank Party

It's been a hectic two weeks and I haven't entered anything here for some time. We have had first one sister arrive from England then my second sister with their respective husbands for overlapping holidays. Our 30th Wedding Anniversary celebration fell in the middle of all of this and we had what I'm calling a Two-Tank Party on August 4th arranged by my sisters and our daughters - 2 tanks because that's what it took in oxygen to get through the festivities.


We were joined by many friends and family - those who were in town for the long weekend and those who came back early - and it was great to see everyone. As a result of many fine gifts, I think I have figured out the empirical relationship between consumption of single malt scotch and oxygen saturation levels - one dram per 1.5 percentage points - I'll leave it to you to figure whether the effect is positive or negative.

Life goes back to somewhat normal tomorrow - back to a two/three person household instead of 8 - and then it's a short slide to Labour Day and cooler weather.

I'm in my 9th week and starting the third month on The List. During the last three weeks it has been a tremendous help to have my sisters and their husbands come to physio and help with set up, wipe down of the equipment etc. I can skate through the propgram in about two hours with assistance whereas it takes about an extra 30 minutes on my own. Stephanie and Anne-Marie will take over when my last sister leaves to go back to the U.K.

The novelty of physio has worn off a bit and I know it will seem more of a grind as the Fall appoaches. On the plus side I am feeling much fitter and I'm up to 1.8 miles an hour for 20 minutes on the treadmill and tension 5 - whatever that means - on the bike. I'm also using weights more for leg and hip exercises so the program is having a positive impact on my level of fitness and general well being.

I think the number of transplants being performed has increased after what seemed to be a quiet Spring. That always is good for a lot of water cooler speculation in the Treadmill Room and adds to the buzz and general feeling of anticipation in the air so we are all hopeful. A good way to shift from summer to fall mode.

Radioactive Breakfast

I started my day at 8.15 with a radioactive toasted scrambled egg sandwich. It didn't quite make it to Toronto's Top Ten Breakfasts as it was missing the coffee and OJ but it was welcome after the overnight fast.

I then got to watch it pass through me - in a manner of speaking. It was really a boring set of white dots on a black background every 30 minutes as they x-rayed my digestive tract.

On to the spirometry test which always results in a fit of coughing as though all the huffing and puffing disturbes the fibres in the lungs.

Then the physio program for 2 hours. I finally got to the office at 3 feeling as if I had put in a day already.

Tests and more Tests

The weekly grind of the physio program goes on - and it is making a difference as I have more energy and feel stronger.

This is interspersed with periodic testing. Next week it is Solid Gastric Emptying - a delightfully named test for something relatively innocuous. It's essentially a barium meal on an empty stomach to see how quickly solid food is digested. Apart from having to sit around for periodic x-rays to track the meal's progress - it doesn't seem that much of a challenge. Fedex could learn something from this procedure perhaps when they lose parcels.

At the end of August it's the Esophageal Motility and 24 hour pH study. This looks like much more fun! It involves sticking a tube down my nose into my stomach and leaving it there for 24 hours. The tube is attached to a walkman-sized measuring device and is taped to the side of my nose to prevent it slipping in. I think I'll cancel client meetings that day.

I have also signed up for a research project looking into the psychological effects of being on the waiting list. Not something that I had thought much about but my quick preview of the questions has made me think about how I deal with uncertainty and waiting. I'll complete the test and then post my reaction.

The Aston Martin DB10

The trial of the walker seems to be a success so I am going to keep it to use on longer jaunts and for getting in and out of the office with my briefcase etc.

Kate and Stephanie have dubbed it the Aston Martin DB 10. Daniel Craig need not fear - downhill with a tail wind it perhaps can make 4 kms/hr.

Registering to be a Donor

If you are interested in registering to be a donor in Ontario here is the link to the Trillium Gift of Life Network site. It has a lot of useful information, including a frequently asked questions section and a section on cultural and religious perspectives on donations.

http://www.giftoflife.on.ca/page.cfm?id=313B576D-E970-4CBE-B946-49A4B3F306D8

I was surprised to find out that the oldest Canadian organ donor was over 90 and the oldest Canadian tissue donor was 102.

Second Month - Second Gear

I've now finished the first month of physio and also filled up the first exercise card. On Friday I got my new program - a kind of second gear where I have to increase the intensity all around.

The program now consists of more repetitions, slightly heavier weights and faster on the treadmill. None of this is going to turn me into a Schwarzenegger or a triathelete but it does feel good to be making progress.

The physiotherapists have also persuaded me to try a walker for a week to see if it helps. Up to now I have resisted getting one but they do have advantages. I can walk farther, it has a basket to take my oxygen bottles and it has a seat. Apart from the hassle of folding it into the car it does mean that I could get to places I might otherwise avoid such as a waterfront concert or a longer walk in a park.

Back on Track

It is the begining of my fourth week in physio and after today's workout it seems that all my numbers are back to where they were before the infection - so that's good!

It really helps when Anne-Marie or Stephanie come to help. It takes less time to get set up for the exercise and ensure I am plugged into the wall with the right amount of oxygen flow. It also helps if someone is there to help swab down the equipment with the sterile wipes afer use.

Because this is a long weekend there was much chatter in the treadmill room on Friday about the greater potential for lungs being available for transplant. As morbid as it may be, the reality is the more traffic on the roads, the more accidents.

The Joys of Nasal Canulae

There is nothing like walking around with a plastic tube up your nose to generate looks from others. For the most part adults are very circumspect. Kids how ever just stare - and then ask their Dad or their Mum "what's that man got up his nose?"

I'm finding that there are four basic problems with oxygen tubes

The neck jerk - when the tube gets wrapped around something like the gear shift or the handbrake in the car just as you are trying to get out. This a close cousin to the ear jerk so well known to IPod users. If I am really lucky and happening to be wearing my Ipod and my oxygen I can get experience both phenomena simultaneously.

The cat effect - ours loves to play with the tube - and if I am on the 50 foot tube in another room I can be completely unaware of the potential damage being inflicted.

The "Oh migod I didn't mean to stand on it" effect - the tubes are clear plastic and often lie on the floor - you have to aware of some unsuspecting visitor standing on the tube while you slowly go a nice shade of blue. I'm thinking of decorating the tube with Dandy Lion stickers.

The smell - the plastic has a distinct odour that eventually wears off - just about the time you have to replace it. It's like having that new car smell without the cost of buying a new car.

Of course, the tudes are just a means to an end - getting oxygen into me to supplement the poor job being done by my lungs. Getting the right oxygen supply system set up to deliver the right amount for home use, for the office and for travelling about has been a very interesting exercise in shopping around for the right supplier for my needs. The Ontario government's Home Oxygen Program is very good - but it still requires the patient to choose from among the many vendors that are covered by the program.

I have changed twice and am now on my third supplier. I think the combination of oxygen concentrator, liquid oxygen and compressed oxygen tanks I am on now will work. However it takes planning to work out what I'm going to be doing, where I will be, how much exertion will be required and how much oxygen I will need and then loading up the car etc. with all the bits and pieces to make sure I don't run out. I'm sure once I have a routine established it will become easier.

Second Week Set Back

It's the end of my second week of physio and it looks like the physiotherapists have a designed a good, balanced program for me. It will mean going onto a different source of portable oxygen - liquid oxygen instead of the small concentrator I have been carrying. I need more like 6 litres a minute when I'm active and not 2. This means a base unit at home and small units that I refill as needed.

On Thurday as I was on the treadmill my oxygen saturation numbers were way down so we cut back the program. I felt OK but there was something going on. By the evening I had all the symptoms of congested lungs and I was coughing and sneezing. So it was off to the family doctor on Friday for a check up and a prescription.

I was interesting that the monitoring equipment picked up the problem before I was aware of the symptoms

So Friday evening dinner was my favourite - chicken soup and antibiotics!

The Treadmill Room

The Treadmill Room on the 12th floor of Toronto General looks at first glance like any health club - bikes, treadmill machines, weights etc. until you notice that everyone's moving at about a tenth the speed and we are mostly hooked up to wall oxygen outlets.

There are two groups - those that have had their transplants and those that are waiting. It's easy to tell - those of us waiting are tethered to the oxygen outlets or are carting liquid oxgygen wheelies behind us.

The single biggest determinant, we are told, to a succssful transplant is how fit you are. That also holds for post transplant survival. Challenge is that years of prednisone and other drugs have reduced my muscle mass (and replace it with fat!) so much so that for me sitting on a hard surface is difficult for any length of time. It also means that I can't walk for much more than 5 minutes.

The first few sessions have been about getting the right program at the right levels. How far, how long, how much oxygen etc. Looks like I can manage 20 minutes on the treadmill with 6 litres of oxygen a minute at 1.5 miles an hour and keep my saturation level above 90%. Trouble is that 1.5 miles an hour is almost falling over speed - I have to hang on or I lose balance at that speed.

Same goes for the bike - which I find easier. The stretching and hip and joint work is also critical. At the moment it takes me about 2 hours to do the full routine - with all the stops to check levels and to clean each piece of equipment with anti-bacterial wipes (for which you have to wear gloves to protect your hands).

More later about the community of folks in the room.

Statistics

If you are interested in how many organ transplants are done in Ontario and how long the wait lists are, check this out:

http://www.giftoflife.on.ca/page.cfm?id=AAAA221C-5D59-468E-A582-051EEA0652B8

The First Week on the List

A busy first week.

Met with the Transplant Program Coordinator and the surgeon on Monday. The briefing from the program coordinator was as thorough as you would get anywhere. Seventy five minutes of information about what to do, who to call, what to expect while we wait, when the call comes and what to expect after the operation. Some of this I knew but a lot was new. For example I thought that once a donor was located there was only a short period of time - 5 hours - to transplant the lung(s). We learned that the donor can be kept going for up to 2 days before harvesting and then the surgeons have 8 hours to transplant the lung after harvesting. This means lungs can come from as far as Alberta and Newfoundland.

I should be prepared for false starts - called in and prepped but then the operation doesn't proceed. This can happen more than once.


I was surprised to learn that they only use about 15% of the lungs that become available. Contrast this with over 70% for other organs such as kidneys. I also discovered that they blood match but do not tissue match. Not sure why but time and the lack of good tests may contribute to this.


The folks at Toronto General are doing a lot of research to improve the odds of successful lung transplatation. I have signed up for several research projects such as donating bone marrow from my sternum during the operation to see if stem cells play any role - positive or negative - in the development or treatment of pulmonary fibrosis. If positive, there is hope that they might be manipulated to grow new lung tissue.

Another study is to determine if a blood test can predict rejection in lung tranplant patients.

They are not sure if my operation will be a single or a double lung transplant. The reasons for doing a single are compelling. You can function perfectly well on one lung and my lungs are equally shot - i.e. there is very little difference between the two so there is no compelling reason for doing the right or the left. This means more flexibility. One lung is a shorter operation by about half - 4 hours against 8 hours - and is a different procedure so is less invasive. Given a healthy double set of lungs from a donor it is better to do two people with one lung each. I'm also the most common blood type so all this adds up to what I hope is a shorter wait.

Having said that - who knows! The average wait is 6 months but the standard deviation is huge. I heard the story of one fellow who was placed on the list and was called 2 days later. I bet that was a shock. There are all sorts of stories of getting called at three in the morning but the one thing that they emphasize is get down to the hospital ASAP. That, and, if you are in the middle of a meal, stop eating immediately.

More tomorrow about the pre-operation rehab program - three days a week working out in the treadmill room until I get The Call. Not sure I like the phrase "rehab" so I am going to call it physio!

The Beginning

I've never even read a blog let alone authored one but several friends have suggested that a blog would be a good way to keep everyone up to date with events as I go on The Wait List for a new set of lungs. So here goes!

The pager arrived today and it's now active. Another piece of belt technology to accompany the Blackberry. With this and the ever-present oxygen concentrator I feel weighed down but at least it's easier in the warmer weather now to get around with all the junk I have to carry.

Off to see the Program Coordinator and the surgeon on Monday.