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
Wednesday, December 31, 2008
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.
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.
Monday, December 29, 2008
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
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!
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!
Monday, December 22, 2008
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!
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.
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.
Friday, December 19, 2008
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.
Monday, December 8, 2008
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!
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.
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.
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.
Subscribe to:
Posts (Atom)
