That's what I've been up to this week..... doing everything I can to stay busy and distract myself, hoping that this horrible sick anxious feeling will go away.
I went in and had a chat with the Transplant Social Worker yesterday. My reaction to the situation is completely normal after such a traumatic event. I have to be extremely careful not to get sick, and not to lose any weight. I need to keep my extra few kilograms of buffer weight before transplant. I'm forcing myself to eat once a day, even though I feel like I'm going to just throw up.
She confirmed that my distraction technique is a good one - keeping my mind busy every day.
I also visited a lung transplant recipient friend who is currently in hospital yesterday. It's so helpful to be able to chat with someone who has actually been through the experience and knows exactly how you feel. Even though I was supposed to be visiting to cheer her up, she actually helped me!
Fingers crossed that things will improve this week.
Saturday, October 29, 2011
Tuesday, October 25, 2011
The Aftermath
Packing myself on the way into the Operating Theatre
It's been a strange few days around here. After all the panic and stress and tension and fear, I came back home with lots of needle holes and bruises, and still a little bit high from the lovely calming drug that they gave me in theatre.
I haven't been quite sure what to do. How do you just go back to your normal routine? Everything still seems a little off-kilter.
When I think about it, I feel nauseous. I can't eat. It's the same feeling I had after a traumatic event a few years ago.
I was supposed to do some contracting work this week. I had to cancel.
I remember lying on the operating table. I was all prepared and ready - all the lines were in and all the monitors were attached, and I was thinking about how there was a family somewhere who lost a loved one early Friday morning.
It all just seems surreal now, like it didn't actually happen, like that phonecall was just a dream in the middle of the night.
Tomorrow, I'll go and have my intragam infusion just like I always do, and Friday I'll go to Pulmonary Rehab just like I always do.
Routine is good. Structure is good. Control is good. Did I ever mention how much I hate surprises?
Friday, October 21, 2011
Oh What A Night
Well if you've been on Facebook or Twitter today, you've probably already heard all about all of this excitement and drama.
I was in sound asleep in bed thismorning when the phone suddenly rang at 4AM. Virtually no-one has been given my home phone number, so even in my half-asleep stupour, I knew exactly what that call meant.
The Transplant Co-Ordinator was on the other end of the phone telling me that they had found some new lungs for me, and that I needed to be at the Alfred by 6AM.
It probably took ten minutes for it to really register. I quickly called my sister. She asked me if I was 'tricking her'. I wouldn't call anyone at 4.15AM if I was just tricking!
Then came the mild panic - I was completely unprepared. I never expected to receive a call this quickly.... it's only been 7 weeks.
I jumped in the shower and covered myself in Phisohex (including my poor hair), got dressed as quickly as possible and then thought about what else I needed to do. My sister arrived and packed my bag as I did my nebs, tried to close my online shops, emailed stockists, emailed people waiting for orders, emailed my physiotherapist.
I think we finally made it into the car at 5.15, and headed towards the city. I called each member of my immediate family, and then spent the entire trip writing instructions - leave money in the meter box on Wednesday for the gardener, call to change certain appointments etc. Then I had to write a massive list of all my bank accounts / online accounts etc just in case my sister needed it. There was so much that we were already in the city by the time I'd finished.
Arriving at the Alfred, we headed straight into emergency and around to x-ray for a couple of chest films, then it was up to the 5th floor to start preparations.
The doctor put in a cannula and took bloods and filled in the paperwork, and I received my first dose of anti-rejection meds. I then just had to wait until theatre were ready for me.
At 8AM we headed down to theatre. It was at this point that I had to say goodbye to my sister.
Once inside, all the preparations began - lots of monitors connected - a line into the artery in the wrist to measure O2 levels, another large line in the arm for fluids, four lines in the neck, and five attempts at an epidural. Unfortunately due to my bone density problems, I've lost height and my vertebrae are too close together causing a nightmare for the poor anaesthetist.
The next step was to put me to sleep, but this doesn't happen until the new lungs have been inspected by the surgeons.
Unfortunately at 10.30, upon further inspection, it was found that the lungs couldn't be transplanted.....
Yes it's disappointing, but I need perfectly healthy lungs to give me a chance of a good outcome. I still have time and I'm quite sure that my new lungs will come soon.... and at least now I know exactly what to expect!
I was in sound asleep in bed thismorning when the phone suddenly rang at 4AM. Virtually no-one has been given my home phone number, so even in my half-asleep stupour, I knew exactly what that call meant.
The Transplant Co-Ordinator was on the other end of the phone telling me that they had found some new lungs for me, and that I needed to be at the Alfred by 6AM.
It probably took ten minutes for it to really register. I quickly called my sister. She asked me if I was 'tricking her'. I wouldn't call anyone at 4.15AM if I was just tricking!
Then came the mild panic - I was completely unprepared. I never expected to receive a call this quickly.... it's only been 7 weeks.
I jumped in the shower and covered myself in Phisohex (including my poor hair), got dressed as quickly as possible and then thought about what else I needed to do. My sister arrived and packed my bag as I did my nebs, tried to close my online shops, emailed stockists, emailed people waiting for orders, emailed my physiotherapist.
I think we finally made it into the car at 5.15, and headed towards the city. I called each member of my immediate family, and then spent the entire trip writing instructions - leave money in the meter box on Wednesday for the gardener, call to change certain appointments etc. Then I had to write a massive list of all my bank accounts / online accounts etc just in case my sister needed it. There was so much that we were already in the city by the time I'd finished.
Arriving at the Alfred, we headed straight into emergency and around to x-ray for a couple of chest films, then it was up to the 5th floor to start preparations.
The doctor put in a cannula and took bloods and filled in the paperwork, and I received my first dose of anti-rejection meds. I then just had to wait until theatre were ready for me.
At 8AM we headed down to theatre. It was at this point that I had to say goodbye to my sister.
Once inside, all the preparations began - lots of monitors connected - a line into the artery in the wrist to measure O2 levels, another large line in the arm for fluids, four lines in the neck, and five attempts at an epidural. Unfortunately due to my bone density problems, I've lost height and my vertebrae are too close together causing a nightmare for the poor anaesthetist.
The next step was to put me to sleep, but this doesn't happen until the new lungs have been inspected by the surgeons.
Unfortunately at 10.30, upon further inspection, it was found that the lungs couldn't be transplanted.....
Yes it's disappointing, but I need perfectly healthy lungs to give me a chance of a good outcome. I still have time and I'm quite sure that my new lungs will come soon.... and at least now I know exactly what to expect!
Thursday, October 20, 2011
Not that sort of rehab...
I don't know if I've ever blogged about Pulmonary Rehabilitation. I wrote an article for DiVine recently but it just gave a very basic overview.
Anyway, the local hospital that deals with all of my inpatient admissions classified me as a HARP patient in 2004 (meaning that I'm at high risk of taking up a hospital bed on a regular basis). Lucky me.
I was referred to the physiotherapy department and began a pulmonary rehabilitation program. At this stage, I had no idea why I needed a fitness / education program. I was working full time, travelling for work, living a fairly normal life. Luckily the medical professionals were a step ahead of me, and knew what was lying ahead.
The hospital gym program normally runs for 8 weeks, and then you have the option of joining a community run group. The sessions are run as a group of around 6-10 patients with 2 physios, and each person stays for the 8 weeks before moving on.
As I was always going to be heading towards transplant, I've been allowed to stay on within the hospital program under medical supervision. I'm extremely grateful because it's wonderful to be able to review my progress with the physio on a weekly basis. A small change in fitness can be an early indicator of a problem.
I started in the program at the age of 30, and I'm now 37. In the last 7 years, I've literally met hundreds of patients who have been through the program. I'd estimate that 90% would have been over the age of 60 and ex-smokers.
I can't really explain the experience much more than that tonight.... but I have a very special guest blog post coming up next from someone who explains so much more eloquently and more humorous that I ever could.
'Til then!
Anyway, the local hospital that deals with all of my inpatient admissions classified me as a HARP patient in 2004 (meaning that I'm at high risk of taking up a hospital bed on a regular basis). Lucky me.
I was referred to the physiotherapy department and began a pulmonary rehabilitation program. At this stage, I had no idea why I needed a fitness / education program. I was working full time, travelling for work, living a fairly normal life. Luckily the medical professionals were a step ahead of me, and knew what was lying ahead.
The hospital gym program normally runs for 8 weeks, and then you have the option of joining a community run group. The sessions are run as a group of around 6-10 patients with 2 physios, and each person stays for the 8 weeks before moving on.
As I was always going to be heading towards transplant, I've been allowed to stay on within the hospital program under medical supervision. I'm extremely grateful because it's wonderful to be able to review my progress with the physio on a weekly basis. A small change in fitness can be an early indicator of a problem.
I started in the program at the age of 30, and I'm now 37. In the last 7 years, I've literally met hundreds of patients who have been through the program. I'd estimate that 90% would have been over the age of 60 and ex-smokers.
I can't really explain the experience much more than that tonight.... but I have a very special guest blog post coming up next from someone who explains so much more eloquently and more humorous that I ever could.
'Til then!
Saturday, October 1, 2011
Following on with the story this week....
I'm sure everyone is now up-to-date with the lung transplant funding crisis this week, but there are a couple of really good articles in the Age today.
Lack of cash could de-rail transplant program
Politics at play in the Gift of Life
I'm going to add links to all of the articles from this week, just as a reference point:
Lack of cash could de-rail transplant program
Politics at play in the Gift of Life
I'm going to add links to all of the articles from this week, just as a reference point:
- Sept 17, 2011 - Lung transplant cutback plan beggars belief
- Sept 22, 2011 - Transplants under funding pressue
- Sept 24, 2011 - Alfred closes the door on transplants
- Sept 24, 2011 - Longer wait for lung transplants
- Sept 27, 2011 - Patients wait for lungs as political spat grows
- Sept 29, 2011 - Lung patients breathe easy as program resumes (and by the way, this is a ridiculous headline as no-one waiting for a lung transplant is breathing easy)
- Oct 1, 2011 - Lack of cash could de-rail transplant program
- Oct 1, 2011 - Politics at play in the Gift of Life
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