If i could getmy hands on the f*ckers who rang I would happily wring their necks. It wasnt the much needed, hoped for, prayed for call we have been waiting for so so long. It was a withheld number so I couldnt even call them back and scream abuse at them for waking me up at stupid o'clock for no reason at all. I may be coming across as angry right now (no shit sherlock) but I am sick to the back teeth of how much our lives depend on the phone ringing to say 'we have a heart for Peter'. We have almost resigned ourselves to the fact that the transplant may never happen in time.
He is running out of hours on his current LVAD (his eleventh machine since july 05) and needs to get a new driver fitted on tuesday. This is asimple procedure, basically switch one a new black box of tricks, then unplug his current one, and plugs the leads into the new black box. However we do get a bit nervous after this was done before xmas when the machine had a minor fault, beeping every minute as hours had run out. And that time he set off the alarms on 3 different boxes before they found one that worked properly. They have also issues him one before with a mashed up fan cover (the box is essentially a big box of air to pump the bladder, which then moves the blood around his body) which made the machinbe have a funny whirling sound to it. His appointment on tuesday will be the usual, checking he is stable, all organs working correctly, blood work, tests, echocardiogram and x ray. And I am guessing, aside from the LVAD change over, it will be the same as always. Nothing to report. Except that his mum is not going to be happy. We came across something on the Uktransplant site, thanks to Emmie from LiveLifeThenGiveLife, which states that people who are STABLE on LVADs can be listed as urgent on the transplant list at consultants discreation. We were told that Peter cant be listed as urgent because he is stable. Who knows what is going to happen, but my goodness If, big IF, the consultant agrees with my Mother in Law about this bit of ruling from the transplant people, then maybe, just maybe, heart transplant can become a reality once again. Its coming up to 2 years on the LVAD soon. Its been over 2 years since Peter went on the transplant waiting list. He has been through end stage heart failure, ICD op, open heart surgery to fit the LVAD, multiple organ failure, infection after infection. Dont you think its about time his turn came up? I know there are people currently in the transplant unit in a worse state, and in an ideal world they would also get a transplant in time, but a selfish part of me wants Peter to leap up the list, which could in theory mean another person waiting could die. But if he doesnt get a transplant, then Peter would die. The massive shortage of organs is the killer here.
I know this post is kind of disjointed, but I wont edit it. These are my thoughts on s sunny morning in April. A sunny sunday which would for a normal family mean maybe going out and doing something as a family. For us, it means nothing different to any other day. Peter is asleep, in pain. The girls are in the garden, and I am thinking about mowing the lawn, the same way i have thought about it for the last three days.