Worrying times

[Sallydog1]

My husband has final stage liver cirrhosis. He as admitted to hospital last week and it was discovered he had had a bleed and he had 4 varicose tied off. He has new developed AKI3 renal problems and the ascites as spread to his legs he has a fantastic team around him-and they are all fighting for him but I’m scared to death. Yesterday he had a partial drain of the ascites and whilst he still has some pain in his legs he says they are easier. I know the prognosis isn’t good but I’m just wanting a glimmer of hope that I’m going to get him home. There are so many fantastic people on this site who seem to have been through really hard times and come through I just need a little lifeline at this moment thanks

[Hidden]

Oh Sallydog.

All I can say is how sorry I am you too are having to see your husband go through this, whatever the cause of the cirrhosis. Such a horrible disease which affects so many major organs of the body.

Im sure you are already, but all I can say is spend as much time together as you can and dispite everything try to smile and laugh through the low.

My thoughts and hopes are with you and that he will come home with you very soon

Big hug,

Laura xxx

[Sallydog1 in reply to Hidden]

Thank you laura009 getting him home is all I want now. Until this happened I didn’t realised what a vital part in our survival the liver plays every single function is associated with it I’m just trying to keep positive for now

[Hidden in reply to Sallydog1]

Yes it is an incedible organ unless it becomes permenantly damaged through illness or abuse. It carries out over 500 functions in the body so once damaged, the function of many other organs begins to fail with catastrophic consequences.

But with care and medication, many people can continue to live until the possibility of organ transplants as you can see by some of the courageous folk on here.

L x

[195ad4c0]

Hi Sallydog

I was diagnosed with final stage liver disease last june. I have had ascites and a bleed from varicese. 12 months on I am on reduced spirolictane now, 50mg per day. My blood count is perfect and I feel better than I ever did. Diet and nutrition is key as is exercise. Keep positive and hopefully things will improve 👍

[Sally1dog in reply to 195ad4c0]

🤞🏻👍 thanks for your support.

[Hidden in reply to Sally1dog]

Hi

I really feel for you both. I sincerely hope your husband comes home soon. With all my love to you both. Lynne xxxx

[Hidden]

Hi Sally

It must be, well I know it is actually, a very hard time for you at the moment. I speak from the side of your husband but my wife has told me that she never ever wants to go through all “that” again. She didn’t tell me until a year after my first 3 week hospital stay that she was told to decide where she wanted to die - hospital or home! I am glad to say I didn’t die but it was a long road until I got my new liver. BUT we are all different and, as far as I know, none of us on this forum are medical professionals, so we cannot possibly guess what you are both going through with respect to his condition. All I can say is that I recovered from that horrible situation and really hope that your husband can as well.

Good luck

Miles

[Barnetaccounts]

How traumatic for you. I was rushed into hospital last Thursday after having a quite serious HE episode. I eventually managed to get transferred to The Royal Free on Tuesday and fingers crossed should be discharged today. I have had a small amount of ascites drained (4 litres) and my

whole outlook is once again very positive.

My story is that I was initially diagnosed with NASH and had a tumour removed in April 14 by resection. In March 15 the cancer returned and I was put on the transplant list. November 16 finally got the call and was ready to be reborn again, however I haemorrhaged on the table, operation abandoned now they fought to get me stable enough to get me up to ICU.

My wife was told The gravity of my situation and that it was unlikely I would live longer than 24 hours. Family, Friends all came to say their goodbyes even though I was in a coma. 12 days later I came out of the coma, phoned my wife despite not really being able to speak and said something like I love you, what time you coming up. This was met with a screaming I have never heard before, because she was in The hairdressers telling them how grave things were. I got home for Christmas 16 and last Thursday was the first unplanned hospital stay. Why tell you this long rambling story. I have been battling Cirrhosis, Cancer, et al for over 5 years and last week I genuinely feared it was the beginning of the end. Your husbands will, and fight will get him a long way. Let him focus on that and leave The medics to do their stuff, and the impossible can be achieved. Having someone that loves you is massively important, so as has already been said laugh, make plans together, you never know how making plans helps focus the mind. Since my failed transplant I have had 3 cruises each planned in advance as if they were a target to be achieved. I have been to Russia, flown to Singapore, cruised the carribean with my best friend and have now planned my 60th Birthday Party in October. One day I won’t make it but it will never be for the lack of effort.

I really wish you the very best in your husbands journey.

Ray

[Hidden in reply to Barnetaccounts]

Wow Ray - incredible story - you have been very brave to go on cruises especially with your propensity for having HE episodes - so really good stuff 👍. I also know from posts way back you maintain your good SOH.

I presume your wife’s screaming were screams of joy 😀. Oh my - how fantastic.

Good of you to write so soon after your HE event. It’s not easy is it!

Good luck and may you have many more cruises, Ray. We hope to complete our first one in nearly 5 years in July (first holiday of any sort for us in fact 👍)

Miles

[Hidden]

Hi Sallydog1

Its fantastic to see our members supporting you here. If you would like to have a chat our helpline is open today until 14.45.

Warm wishes

Trust1

[Joycemluc]

Hi Sallydog

I'm so sorry to hearabout your husband, but hope I can give you a glimmer of hope. I too have Stage 4 Chirrhosis. On March 23rd I was admitted to the hospital with almost identical problems. In one week while in the hospital I had 4 blood transfusions due to bleeding varicies. They banded them and since then I have had also had them banded again. All of my veins were collapsed, requiring a central line in my neck. I was in critical condition, and moved from one hospital to another that had a trauma unit and was able to handle my condition. In one week alone I gained 40 pounds of fluid in my belly and legs. Like your husband, I was very sick. I was in the hospital for 11 or 12 days and then moved to rehab for a week. I'm happy to say that I am home with VNA coming to check my vitals and INR. I was weak, but am feeling a little stronger every day. Please don't lose hope or faith that your husband too will come home. I am absolute proof that it can happen. I will keep you and your husband in my prayers.

[Sallydog1]

Thank you all sooo much the latest on my husband is. His liver is behaving itself all his bloods are good unfortunately he has somewhere in his body an infection which looks like sepsis he’s had multiple antibiotics both orally and intravenously today they have moved him to icu because his kidneys are failing and they are of the opinion that this could be the site of the sepsis he has this afternoon been placed on dialysis for 48 hours hoping to give the new antibiotics a chance to grab hold of the infection we have been told that the next 24/48 hours are critical since if this doesn’t work we have basically ru out of options. The irony of this is that the liver problem is now stable (as a decompensated cirrhotic liver can be) and we’re fighting the battle with the kidneys. Whatever the outcome of this is I cannot thank his medical team enough for going above and beyond to try and make this a good outcome.

[alfredthegreat]

Hi Sally. Just want to say that I was classed as terminal for 4 years with cirrhosis and HCC. I'm still here, now 9 months post transplant and feeling really well. I hope that your husband pulls through this and is home again soon. Thinking of you both. Very best wishes. Alf

[Mypoorlyhusband]

My husband is at the same stage. Last month he had two more oesophagal varices tied and two in his stomach. Had to give him 7 pints of blood. He has been told there is nothing more they can do for him. He is getting stronger at home but i dread what is coming next.

[Hidden in reply to Mypoorlyhusband]

Hi Mypoorlyhusband,

Wishing you both the best and that he continues to improve.

Mary

[Hidden]

Hi Sallydog1,

Thinking of you both and hoping things are going well for your husband.

Mary