Well Monday was a busy day. My mum called the transplant unit and they still had no beds. I was pretty upset by this point and just wanted the assessment I had been promised. I had lung function at 11am so they told us to bring a bag incase a bed was free afterwards but it wasn't looking likely. They had a 16yr old girl who had had a heart transplant ready to leave the transplant (tx) ITU and she needed a side room.
So we could get there in good time we left the house pretty early, I was tired and in a bad mood. Not a good combination. I tried my best at lung function but the machines were giving a poor picture so for a few of the tests I was taken off the larger machines and put on an old style smaller machine on wheels. I then had blood taken from my ear to check my blood oxygen levels, they turned out to be very poor on my 8litres of oxygen so I was also a bit upset with that. After I'd done lung function they called the transplant unit to find out if a bed had come up and if I could go home. They said no I couldn't because one had become available but it would be in the afternoon so we had to kill time in the hospital from 11.30 until I got to the unit...
Once I got there I met some of the staff, one of the doctors clerked me in and one of the co-ordinators came for a chat. She was going through a list of things including if I got on the list how I'd get to the hospital, contact numbers and after a few minutes her bleep went off. She went to go answer it and it was a heart being offered for transplant. She then obviously had to dash off to arrange the transplant but left me with the lung transplant handbook to read through, she said "this will be your bible, most of what you need to know you'll find in here but I will come back and talk to you more". I hadn't expected for things to be so busy and intense on the unit.
The co-ordinator came back today and took me through what would happen step by step from now to life post transplant. She highlighted the sad fact that some people don't get their call in time and in light of this life must carry on as normal as possible because life sat beside the phone waiting for it to ring could be a wasted one. She also stressed that transplant shouldn't be seen as the cure, it is an extension of life. She used emphysema patients as an example she said "they could be ill but tick along for 10yrs or so. If we transplant them they may only get 5yrs but the hope is that those 5yrs would be better quality than they could ever hope for." She then spoke about donor families and post transplant contact and how they encourage recipients to write to thier donor families. She used an example of a card she passed to a family recently, a heart and lung transplant patient wrote and thanked her donor family on her 16th transplant anniversary and how over whelming it is to think a decision they made to help other people live by choosing to donate their loved one's organs 16yrs ago is still making a difference today. There is no bigger gift than the gift of life, organ donation is a miracle. We then moved on to post transplant life and she explained about the drug regime and general health and the fact that not only do you owe a good, compliant drug regime to yourself you also owe it to staff that have saved your life by giving you a second chance and also to the donor family that had to make one of the hardest decisions of their lives at one of the most difficult times of their lives. That for me puts it into perspective, a selfless family say yes to donating a loved one's organs to strangers they may never meet but wanting to save thier lives anyway, how can you not want to look after yourself and your new organs post transplant? I would feel very guilty if I didn't.
Tomorrow I have one of my biggest tests, the right heart cath, I am nervous but I think its more because I don't know what to expect than anything else.
Sending some smiles!
4 weeks ago