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!
Thursday, November 27, 2008
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.
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.
Saturday, November 22, 2008
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!
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!
Thursday, November 20, 2008
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!
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.
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.
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.
Tuesday, November 4, 2008
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?
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.
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.
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