Today started off like any other day.
I had big plans to actually get out of bed on time, head to Pulmonary Rehab and then go and meet Carly for lunch.
The alarm went off at 8AM and I remember hitting snooze at least three times.
At 8.41AM my mobile phone rang, and it was a mobile number calling me. I assumed it was the cabinetmaker as I'm finally getting my disability kitchen mods after two years of waiting.
It was actually one of the Transplant Co-Ordinators.
They had some donor lungs that were a match and they couldn't say whether I would get a transplant today, but it was a possibility and I should prepare and they'd call me back. Luckily I was still asleep and hadn't had breakfast at that stage, although I was allowed to drink half a cup of coffee.
So I went through the drill - nebs, shower, disinfect, clean clothes, and wait for another call.
At 10.08AM they called back and were still unsure whether it would go ahead but needed me to come into hospital just in case.
We went through the first bits of prep / paperwork / bloods etc and were just about to do an ECG, when at about 12.50PM I was told that it wasn't going ahead today.
There was another lady who was also a perfect match for the donor who is in dire need of a transplant right now to save her life. I hope she pulls through, and I hope the third time will be the one for me.
Showing posts with label false alarm. Show all posts
Showing posts with label false alarm. Show all posts
Friday, November 16, 2012
Sunday, October 21, 2012
One Year Ago Today
Just marking time again.
One year today since that 4AM phonecall.
After receiving that call after only seven weeks, I would have never thought that I'd still be waiting one year later.
It's worrying.
I don't know whether there haven't been any matches, or whether there have been matches but someone else on the list is more ill than me and closer to the end without a transplant.
Trying not to think about it.
Had to just get the words out of my head.
One year today since that 4AM phonecall.
After receiving that call after only seven weeks, I would have never thought that I'd still be waiting one year later.
It's worrying.
I don't know whether there haven't been any matches, or whether there have been matches but someone else on the list is more ill than me and closer to the end without a transplant.
Trying not to think about it.
Had to just get the words out of my head.
Saturday, October 6, 2012
False Alarms
It's been nearly a year since my false alarm.
I was really sad to read this week that little Coen Ashton had a false alarm on Wednesday. His mum has written a blog post.
There are no words. I get butterflies in my stomach just reading it.
I was really sad to read this week that little Coen Ashton had a false alarm on Wednesday. His mum has written a blog post.
There are no words. I get butterflies in my stomach just reading it.
Friday, November 4, 2011
Two Weeks
I'm not quite sure what I should be counting now.
Two weeks since that near transplant experience, or nine weeks and two days on the waiting list.
The bruising on my neck, arms and wrists is subsiding, but I get a really achey back each night from the ten epidural attempts. My back is itchy, but when I scratch it, it's numb. It's very bizarre.
After ten days, that horrible nauseous anxious feeling finally went away. I've been able to start eating properly again this week, but the waiting feels different now.
It's made it even harder to make plans, or committments to anything, because now I know for sure that when that phone call comes, I have to just drop everything and go. Some people face years of this. It doesn't bode so well with my control freak / always maintain committments and promises type personality.
I've had lots of weird and wonderful comments over the last couple of weeks. Some people really don't understand how organ donation and transplants occur.
Hmmmm it's been interesting to say the least....
Two weeks since that near transplant experience, or nine weeks and two days on the waiting list.
The bruising on my neck, arms and wrists is subsiding, but I get a really achey back each night from the ten epidural attempts. My back is itchy, but when I scratch it, it's numb. It's very bizarre.
After ten days, that horrible nauseous anxious feeling finally went away. I've been able to start eating properly again this week, but the waiting feels different now.
It's made it even harder to make plans, or committments to anything, because now I know for sure that when that phone call comes, I have to just drop everything and go. Some people face years of this. It doesn't bode so well with my control freak / always maintain committments and promises type personality.
I've had lots of weird and wonderful comments over the last couple of weeks. Some people really don't understand how organ donation and transplants occur.
Hmmmm it's been interesting to say the least....
Saturday, October 29, 2011
Distract Distract Distract
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.
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.
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!
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