Been a long while since I posted on here about my husband and feels like a lot has happened since!
The last time I posted his operation to fit the catheter for PD didn't happen and they were planning on getting him an appointment to do it under a general anaesthetic instead. That was on a Friday, then on the Sunday night he was very very ill. I had to call an ambulance out for him and he was taken to our local hospital vomiting blood and then transferred to The Royal London the following day. His kidneys had completely given up. They kept him in all week and gave him a temporary line for HD before taking him to theatre on the Friday to fit his PD tube. He was due to be discharged on Sunday, so Saturday night I was at home relaxing and looking forward to getting him home when I had a call from Guys hospital looking for him as they had organs! Couldn't bloomin' believe it! They spoke to the ward where he was and arranged for him to be transferred to Guys. Meanwhile I was in a cab on my way, and then beat him to it! Unfortunately the doctors were concerned that he had been so unwell that they thought the risks were far too great to go ahead.
Was great to get him home, even though both very disappointed about the transplant, but of course we would never have wanted any extra risks. PD was hard to get used to, but he has not had any problems with it (touch wood) and has got into a routine. His work have been fantastic and he has adjusted his hours slightly and all in all he's very well. We even had a holiday to Norfolk for a week in July and Fresenius couldn't have been any more helpful, was like clock-work.
Anyway, we both knew it couldn't be much longer before we had "the call" again. It came two Tuesdays ago from the surgeon on his way to check the organs. He told us to hang fire and he'd call us back to say whether to go. We walked the dogs, packed bags and cried. It's the weirdest feeling. You wait and wait for it and when it comes you're not ready – at least that's how we felt. A few hours later we had a call back from the surgeon to say that the pancreas wasn't good enough and so it couldn't go ahead. Heartbroken.
Then last Tuesday, we had the call again! Panic stations, dog sitters arranged, bags packed for all of us. Then to find that they had to biopsy the kidneys and they weren't viable. Another heartbreak.
Not sure if it gets easier to get these calls and for them not to happen. I know of course we are so grateful that he is getting them, I just pray that the next one is it and it's perfect and we can get on with our lives. We only got married in December and so much has happened already.
There wasn't really a point to this post, but it sure helps me writing it out. I do read what you're all going through on here and think how bloody strong you all are and you're still there offering advice and reassurance to those who seek it. Good luck to all of you and I hope you don't mind if I get more posting and involved on here as I think it does help me. If I'm brave enough I might even show you my ice bucket challenge – donating to Kidney Research UK
Amber x
