Hello everybody, I hope you don't mind me posting but I'm in need of some support I guess. My husband had a double lung transplant almost 2 years ago, he was diagnosed with COPD back in 2008 and slowly deteriorated until he had to go onto the waiting list. He was incredibly lucky and had his transplant only 5 months after being listed. We've had a very rocky 2 years due to rejection, infection and some nasty viruses so he's spent a great deal of time in hospital so its been tough, don't get me wrong, if he hadn't of had his transplant he probably wouldn't still be here so I'm very thankful but it has been difficult.
We have 2 young children so trying to balance family life, work, all the normal day to day things and having this hanging over us is taking its toll. At the start of this year it was looking as though we had turned a corner, his health was stable and we were planning on having a year of "normality". Then a couple of weeks ago he went back to the hospital for a check up and we've found out that now his new lungs are deteriorating due to a virus he has just before Christmas, we don't know timeframes yet but he's going back on the 28th April to run the same tests again so they can begin to build up a picture of how quickly/slowly the decline is happening, but ultimately he will probably have to be re-transplanted in I estimate 1 - 2 years. The thought of this terrifies us both. There are so many if's and but's. He was so lucky the first time round to receive a transplant so quickly, you see he has a rare blood group just to add to it! So when he was listed it was a case of "glass half empty - you are in for a long wait and might not get a transplant at all, glass half full - you are the only person on the list with this blood type, so if a match comes up, its yours". Luckily it was the latter.
But this time I can't help thinking that he can't be that lucky twice, also his body has already been through so much so going into it a second time he is so much weaker.
In terms of myself, i'm trying to hold it all together but its a struggle, over the past year or so I've started experiencing panic attacks and anxiety, I can no longer drive on the motorway (I was travelling daily to visit him when he was in Harefield which is up the M4 and M25 for us) and at the moment I don't feel very strong or brave. I know I have to be, I know I have to step up, we got through this once and we will do it again but at the moment I just want to bury my head in the sand.
I'm not really sure what I'm expecting anyone to say or do about it, I think I just need to try and get some of it out because my head feels like its going to explode.
I'm sorry for the long post, and if you have made it this far thank you so much for taking the time to read it. One thing I have learnt is everyone is fighting their own battle, and quite often the biggest smile hides the saddest feelings.