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.
Monday, June 30, 2008
Thursday, June 26, 2008
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.
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.
Saturday, June 21, 2008
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!
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!
Thursday, June 19, 2008
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.
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.
Sunday, June 15, 2008
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
http://www.giftoflife.on.ca/page.cfm?id=AAAA221C-5D59-468E-A582-051EEA0652B8
Friday, June 13, 2008
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!
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!
Wednesday, June 4, 2008
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.
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.
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