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Aortic Valve/Bowel Rejigging - Carers UK Forum

Aortic Valve/Bowel Rejigging

For issues related to specific conditions and disabilities.
Hello. I'm brand new to this forum. I'm not really sure what I'm after, information or just someone to say this to.

Other half was in hospital most of July/August. Had previously had an aortic bypass. Went in with leg pain. First it was blood clots throughout leg, possible cancer so full body scan, no cancer but possibly an infection, petscan confirmed infection in previous graft which couldn't be erased (mechanical ? graft) so needed a replacement graft. Surgery found the previous graft had fused with the bowel so they cut a foot of something off and rejigged the digestive system. I.C., H.D.U., Gen Ward, he had an internal bleed, an infection, pneumonia then another infection. Discharged, district nurses twice daily giving anti-clotting injections, then back as a day patient for a scan, removal of filters in leg and finally the drain. Except the drain was still producing bile so into hospital for another week. That's the background.

I'm struggling. Since this is a carers forum, I'm going to be selfish, because throughout this whole process I've been out of the loop. Still am, he saw the consultant for a follow-up, and also his G.P. for various - it's all about his recovery, rightly so, but what about me ? Who do I ask questions ?

Ok, I've had coming up to three months of stress, whereby he almost died. But he survived, great. Right now, he's upstairs in bed. He barely leaves the bedroom except for the bathroom. Yesterday, he was awake for 4 hours out of 24.He won't walk. He won't 'go out'. He says he's exhausted all the time. At the consultants follow-up, he told him he was practically suicidal the previous week, feeling the way he did. That really blew me away. All the professionals keep saying is ''it was major surgery and it will take time ... six months .. 12 months''. I feel absolutely isolated. There is no one to talk to about this. Ask questions. At the hospital and googling, it's all a gradual improvement, try walking a bit further today than yesterday. He's gone backwards, he's doing less now than when he was discharged.

Ok, me, the selfish bit. I said I feel isolated. I do. There is no one of ask questions. Yes, I think I'm depressed. There is no joy in our home. Just this pervading sense of gloom. I could handle the stress (people do) because it wouldn't be forever, he would recover. He isn't. He's worse. And he isn't even trying. And the really selfish bit is I feel p*ssed off that once they've done their bit he's just dumped at home and I'm supposed to manage. Someone who's physically weak, won't leave bed, is depressed and semi-suicidal (he refused a MH referral)

I don't know if I'm venting. I do know I'm angry. I'm in tears half the time. Anyway, I'll leave it there.
Hi Molly, welcome to the forum. I'm not surprised you are struggling, it would be amazing if you were not. What a roller coaster ride for both of you. As it's the middle of the day and I'm supposed to be doing a heap of things, I'll write a longer reply presently, but I assure you that you will find lots of support here. For the moment, I have a few questions which might help me and others who would like to help.
Can I ask how old your partner is? Did the hospital draw up a care plan before he was discharged? Have you been told to ask Social Services for a Carers Assessment? How are things financially? OK or awful?
Hello Molly and welcome to the forum :)

What sort of questions do you want answered ? Medical ones ? Then maybe start with your GP; because of patient confidentiality he probably won't be able to tell you much, but if your husband was to give written permission to the GP to discuss his condition with you then the GP should (hopefully) be able to fill in a lot of the gaps. If the GP's knowledge isn't adequate then you should be able to go down the same route with your husband's consultant. I agree that it's the 'not knowing' that is hard to take and cope with !

Alternatively you could ask your GP for a referral for yourself for counselling - they won't be able to answer your medical questions regarding your husband's condition as they are there for you to talk through your concerns regarding what has happened, what is happening now and what will happen in the future. You have every right to be p*ssed off and depressed, but NO you are not being selfish - you matter too !