My husband was told two weeks ago that he will need a liver transplant. Everything I have read is about the patient which is quite right but who and what is there for loved ones who may not go through it physically but do so emotionally and mentally?
How have your loved ones got through supporting you through varying stages of liver disease or approaching transplant ?
Hi, In a way it's team work, admittedly a few things will change but you can get through it I got very grumpy ( typical male ) but it soon passed. Try to let him do things by him self but keep an eye on him. Main thing is think of the future you will both have together. I hope it goes well for you both..
There are support groups on Facebook for partners of people who are caring for someone who is waiting for a transplant. They were invaluable to me and my husband pre transplant as when I was in Leeds, I didn't have many visitors being from Manchester but because the people from the group are based in the north-west they took in turns to come visit me and also to keep my husband going. What hospital is your husband under?
I agree with Jo Jo , and am an admin of an international one. Its one hell of a roller coaster ride, FB groups offer much emotional support , and have people who have been thru exactly the same thing , often they are not as restrictive as this network is either .
My husband had a liver transplant in May, so I know exactly how you feel, but there are partners on this site, and also as Jo Jo mentioned on Facebook. It's hard to explain to someone who's not been through it, but it's the worst thing in the world watching someone you love slowly deteriorating. There are many partners and friends of liver transplant patients and I've found them very supportive on these forums. There is one particular couple, Lucy and Jim, who've given me so much advice, I could never repay them. Please remember that you need to look after yourself, even after your husband has the liver transplant. I am exhausted and it's a roller coaster, but try and be positive. I hope your husband receives his new liver soon. It has been a struggle, as you say, it's emotionally draining, but I'm trying to look into the future and it looks promising at last, as I'm sure it will for you. Stay strong, but more importantly healthy.
Lots of supportive partners on here, we tend to be the ones who deal with the medical side of things whilst loved one gets on with living life the best they can and getting the care they need.
My hubby was assessed for transplant in 2014 and added to the list. I attended every day of his assessment except from when he was having medical tests, I took part in all discussions (as hubby struggles with hearing and understanding the facts) and was the one who interpreted all the med speak back to him (repeatedly). Hubby was delisted after 10 months as his bloods improved thereby taking him out of the qualifying criteria for transplant. Now we just get on with life as each day presents itself and keep a close eye out for any signs of deteriorating health.
Hubby hasn't gone through transplant but did have to have aneurysms dealt with in his splenic artery which was a bit of an ordeal for both of us. That worry, the what ifs and all that is pretty terrifying when you are on the outside.
I was never told of any support systems for the loved one although at TP centre I understand that coordinators do update you as to what's going on in surgery and support you during the op. I tend to spend a lot of time on here though and have educated myself about liver health as much as I can so I can help hubby as much as possible.
Wishing you both all the very best, always someone about on here for you to vent to, ask questions of and get cyber support and hugs when needed.
Katie xx
I had my transplant late last year & thankfully am now doing much better. This is after years of deteriorating health from NASH. There is absolutely no way I would have made it through without my fantastic wife & family.
We have tried to approach the whole thing as a team but everyone always asks how I am doing but I am aware of the terrific strain my wife has been under throughout. I have tried to support her as well but know I have been a right pain at times. It always seems to be about me.
There doesn't seem much support for spouses? Any advice for who to contact?
We are based near Bournemouth, are there any groups in this part of the country?
Is this something the Liver Trust could help with nationally?
Hi Dorset123,
Unfortunately there is not a general liver support group near to you at the moment.
The British Liver Trust is well aware of the importance of support groups. We have a thriving and active collection of groups in Scotland and it is our aim to learn from the examples there and try to expand support groups in England.
We are aiming to look at resources for this in the Autumn. Please keep in touch!!
Warm wishes,
Rebecca
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