Spouse with cirrhosis

[Pslade]

My name is Pam. My husband has cirrhosis of liver. Was diagnosed 6 months ago but we believe he's had it for awhile. He has acsities where his belly needs draining every couple weeks. Last week they took 9 liters off. Going back a couple years he has follicular lymphoma.in remission but will return.just a matter of when. Had his umbilical hernia fixed and they explored to see where fluid was coming from. That's when we found out about liver. He's not eligible for transplant. Has never been heavy drinker but has been very overweight along time. I'm lost..I just don't know what to say or do. We have been together for 45 years. Don't know what I should ask dr. He's on 3 different water pills twice a day. I have no support here. I'm lost. Thanks for letting me vent

[Kimlescam]

Hi Pam

My name is Kim and my husband also has cirrhosis of the liver - we have no idea why as he has never really drunk. He also has emphysema and a host of other problems. It is difficult to stay positive, especially at the moment.

10 days ago he was put on the liver transplant list, since when things have got steadily worse.

At the weekend they have found a shadow on his lung - waiting for scans etc.

I also find it difficult and saying the wrong thing at the wrong time seems to make things so much worse. We have a son aged 16 who is coping well and trying to support me but it can be so difficult.

There is no support from his family whatsoever - like you I feel I'm struggling and most doctors don't have the time to spend helping him.

Yesterday he said he feels like just being left alone to die.

Here we can tell it how it is and know there are others out there who understand.

Please feel free to let off steam and ask for help. I have found help reading through some of the other posts and some people have been kind enough to respond to mine.

Take care and be strong xx

[Pslade in reply to Kimlescam]

Thank you so much..it is so hard.and I understand about not noting what to say or not to your spouse..mine goes off just yelling saying I don't understand...it hurts me deeply but I just listen ..his personality is changed so much. And yes..no transplant because of cancer

[Barnetaccounts]

It is a real “kick in the teeth” when you get a diagnosis without any plan for the furure. I have cirrhosis, but after nearly 30 years of systematic abuse am in no position to moan. I haven’t had a drink for 15 years now and was diagnosed with NASH nearly 4 years ago. To be told that my cirrhosis was not a result of my drinking just made me laugh. I had a resection in March 14 to remove a tumour, and was left under no illusion that the cancer would return it was only a matter of time. I lost a considerable amount of weight (8stone) and was placed on the transplant list in May 15. Finally got the call in November 16 and went down for the transplant. Operation was aborted due to major haemorrhage, and they transfused me with 25 pints of blood. My wife and grown up children were told I wouldn’t make the night and anybody that needed or wanted to see me should get there as quickly as they could. I was in a coma for 12 days, regaining consciousness on our 35th Wedding Anniversary. Bottom line is I am still here a year later, suffering with chronic fatigue, ascites etc and will live with my old liver as long as it lasts. I have only been drained once and that was from around my lung. I am on 2 water tablets a day, which seem to keep any fluid retention at bay. I am being tested for Hepatic Encalopathy at the moment as I can get confused at times. I am in no position to advise you, but write your questions down and insist on getting the answers. My experiences of Hepatologists vary from Dr to Dr. Some are good at telling it straight others seem to fluff things up so they don’t seem so bad. I have documented my “cancer” journey in a warts and all blog which is humourus, sad, rude, but very real. It can be found at 1liver1life.wordpress.com

I really wish you the best in your fight and hopefully things will be manageable.

Ray

[Kimlescam in reply to Barnetaccounts]

Good luck to you both xx

[cazer]

when you say he's not eligible... is that because of the lymphoma...

i feel for you... i now luckily have had a transplant but was first ill with my fourth pregnancy and it was touch and go for me and our son.... we both survived but i was ill from then until now. over the last 2 years before txp we thought i might not survive... so went on a big holiday.... somehow contemplating your mortality is sort of freeing but i felt terrible for my husband who would have been left to cope with a new baby and 3 other children. it's been hard on our kids who are now 18 and upwards... coping with the txp.

it sounds like he's pretty poorly... but try and do as much as you can together.. enjoy your time as best you can. all the tests in the world will not change things...

is there a club or society you could join just to get an interest away from the home... even if its just an hour or so? you may make a friend or two... something to help if you are finally on your own.

i hope you don't think I have spoken out of turn but sometimes we get so tied up with hospital appt docs etc that we forget to enjoy the little things.

my very best wishes to you... and hope you can find a few good moments to enjoy together. xxcazer

[Pslade in reply to cazer]

Thank you so much for your thoughts.i will keep going till we can't go anymore..we do have a grandson that'll be two next month and he really helps making us smile and laugh.

[freddie76]

Why is your hubby not eligible for a transplant?

[Pslade in reply to freddie76]

He has follicular lymphoma. In remission but none curable.just matter of time before it comes back. If it does come back they won't do chemo again because of liver.

[freddie76 in reply to freddie76]

Sorry to hear that. My hubby was lucky. Liver was full of cancer but undetected.

Once they had him on the table with an ew liver for him they had to go ahead.

Nearly 6 years now still ok

[Pslade in reply to freddie76]

That's great. Hope your life is full of happiness. The weird thing with hubby cirrhosis is he never had bad blood work . Indications of liver cirrhosis was never there. They only found out when they did hernia surgery and explored to find reason for acsities did they find he only has 20% of his liver working