I can't believe I'm posting this so quickly after my last false alarm but yes,my third time has been and gone without the transplant going ahead. It happened last Thursday (26th) at 12.15am, I couldnt believe I was getting another call just a month after my last one. Usually the calm one in the family during calls, I have to say it hit me differently this time and i paniked a little bit, managed to calm down on the way there. Although the weather was appalling, we got to Harefield quickly, canula went in first time and has really made me feel better about that side of things again, so thats a positive. At 4.30am we were told the donor lungs were too damaged and came home. Got in just as my parents alarm was going off at 6.30am.
So thats what happened. Whats harder to pin down is how I actually feel about it all. Gutted is an obvious one. Hopeful that the two were close together and desperate that call number 4 will be soon. It somehow seems less impossible when the calls are close together... Mentally,physically and emotionally I feel drained and run down. It takes its toll and can catch you off guard. I randomly burst into tears and realise i'm just hoping with every part of me that THE call will be very soon. I start to hope I won't be here for xmas that I'll be at Harefield instead. The things that seemed such a big deal like present buying don't matter so much anymore and the things that seeemed terrifying like canulas and chest drains shrink in their importance too. If I'm honest I have felt a slight decline in my chest these last few weeks. Not caused by infection or a problem but probably (hopefully) by stress, emotional toll and exhaustion. It scares the hell out of me. I have been using my oxygen mask as its easier to breathe with this but its also a constant reminder. It makes me want that call even more.
As the years go by on the list Christmasses get harder. I am the one who loves Christmas most in our family but lately its hard to muster the joy. It breaks my heart to admit that. When you dont have the puff to buy and wrap your own presents, decorate your xmas tree or go to do any of the normal Christmassy thing you have always enjoyed it is very hard. I am so grateful to be here but I wish I could know how much longer I have to wait and if the waiting will ever lead to what I want. I don't want my illness to change me, its hard to stay positive when every day is a new ache, pain, problem to battle, I'm not always how i want to be in myself. I used to wish I could go back to how I used to be when breathing was easier, in hindsigh it probably wasn't that much better. Instead my Christmas wish is to go on and become the person I want to be,could be. I just need a chance to do that first.
I don't want my last christmas to be one of forced smiles, incredibly effort and unspoken worries that lurk in our minds, I want it to be my dream christmas with new lungs and new hope.
Please pass this link on to others to sign up to the donor list, together we can get the word out.
I'm sorry if this has upset anyone (I'm certainly crying right now) but I had to get these feelings out that have been eating me up.