When I last saw my own Respiratory Specialist a few weeks ago, we had a good chat, and he recommended that it's probably time to go ahead and consider heading down the transplant route.
I had an appointment at the Alfred on Tuesday morning, and they agreed that with my lung function as it is now (hovering around 22% of normal) and being reliant on oxygen 24/7 since last year, the benefit could now outweigh the risk.
I met the Transplant Co-Ordinator and the Social Worker for the first time, and we set some dates.
I'll be heading in to stay for 3 full days of pre-transplant testing in early July.
At the completion of all of the testing, the results are reviewed by a medical panel, and then they will make the decision as to whether or not I'll be listed for a double lung transplant.
I'll write more about things as they happen, but for now, that's the basics, in black and white.
17 comments:
Scary stuff, Cam. It seems awful to say I hope you are listed and that some suitable lungs are found for you relatively quickly ...given that someone has to be that donor to make that happen. But I do hope that you get the opportunity to live without an oxygen tank shadowing your every move at some point in the near future.
It sounds terrifying! And also very exciting.
such a scary thought, but boy oh boy it'd give you back a mighty big whack of freedom!
will be thinking of you all the way!!!
xoxo
Hugs to you. Here's hoping you get through this round. you may need to bribe all the specialists with aprons and brooches but it would definitely be worth it. Cherrie
cam i will be thinking about you often and sending positive thoughts your way. the prospect must be terrifying for you but the gains are going to be so very worth it
Sounds very scary, but a good step if the medical board approve you for the list.
Wow. Now the real journey begins. Have you seen other patients pre and post before? The difference even after 7 days post transplant is simply amazing. Fingers crossed you're an excellent candidate. Just imagine your freedom!
xx
The benefit now outweighs the risk? That's a worry if the risk hasn't changed.
I know this must be a very scary time as the doctors don't hold anything back with the details they tell you heading into being listed. Only fair so that you can make this decision based on the real facts, not necessarily the pretty life that everyone would like to imagine is the outcome after transplant.
The statistics they tell you are pretty ugly but I've met plenty of people who have blown those statistics out of the water. Just follow exactly what you're told to do except for when your instinct tells you that they're wrong and then you speak up loudly no matter how uncomfortable it makes you feel.
And that first feeling of being able to breathe normally without the oxygen must be amazing - Imogen did something like 20 laps of the ward in 1 go about a week after being transplanted, simply for the pure joy of it.
Thinking of you Cam, Jacqui.
Sending positive thoughts your way Cam.
Oh Cam - you must be going through a heap of different emotions towards this. I so hope the tests go well, and that you'll be on your way to better health. Huge hugs from me.XX
Big news!!! I hope all goes well.
What crafty stuff will you be taking in to hospital with you?
xxx
OH Cam, what a big moment.
So many different feelings and thoughts must be going on in you.
Sending you all my love and postive vibes, remember we are all here for you cheering you on and thinking you're awesome xo
It does indeed sound like it is time. I hope all of the testing goes well and the powers that be make a positive decision for you. Thinking heaps and piles and bucketsfulls of positive thoughts for you :-)
Wow Cam - this is huge! Thank you for sharing this whole process with us (although I say "process" but really it's your life!)
wow ~ a huge time in your life. we'll all be here cheering you on
wishing you lots of wellness and good wishes
That's huge - I can imagine really exciting but completely terrifying. I hope all your appointments go to plan.
xxx
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