Lindar1961: Morning everyone! I don’t... - British Liver Trust

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Lindar1961

Lindar1961 profile image
16 Replies

Morning everyone!

I don’t post much but wanted to share that my husband is going through two days of testing to see if he is strong enough for a liver transplant. We are hoping that they don’t find cancer outside of the liver so we can get on the list. He has NASH. We are in the United States.

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Lindar1961 profile image
Lindar1961
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16 Replies
alfredthegreat profile image
alfredthegreat

Hi Lindar. I was about as weak as you could get and I got a transplant and luckily after 4 years of liver cancer it had not gone beyond my liver.Wishing you and your hubby all the very best. Alfred

Lindar1961 profile image
Lindar1961 in reply to alfredthegreat

Alfred, thank you for the words of hope. I’m glad you got a liver. My husband’s chest X-ray did not show any signs of cancer outside of the liver. We are hoping for the best. Alfred, I pray you do well with your new liver. Linda

alfredthegreat profile image
alfredthegreat in reply to Lindar1961

Thank you Linda for your good wishes. I hope that all is going well with the testing. I remember so well what a stressful time that is. Thinking of you both. Alfred

Smyally profile image
Smyally

Wishing you both the best of luck xx

Lindar1961 profile image
Lindar1961 in reply to Smyally

Thank you

grace111 profile image
grace111

wishing you well lindar1961. what alfredthegreat said should give you hope. my thoughts are with you both, love grace xoxo

Lindar1961 profile image
Lindar1961 in reply to grace111

Thank you. We are very hopeful. We will get a call next Thursday regarding the committee decision about getting on the list. Yes, Alfred’s words give us hope. Linda

Hey up Lindar

Yes I wish you well also. Good luck! The waiting is awful isn’t it! 😕

Still let’s hope that what largefreddy said holds true for you. It sounds an onerous testing process for you over there. We have a similar process over here but, for me, I found there was also quite a psychological aspect to the assessment i.e. was I mentally ready for s transplabt, did I understand the ramifications of it, did I recognise the importance of not drinking alcohol etc etc. Is your assessment similar?

Miles

🇧🇧

Lindar1961 profile image
Lindar1961 in reply to

Miles,

We were on information overload the last couple of days. For my husband, the thought of a major transplant was overwhelming but we both felt better after all the meetings. For my husband, alcohol isn’t the problem. He has to change his diet and lose 20 lbs by May. He needs to get his BMI down. However the coordinator nurse at the end shouldn’t have told him that after transplant he could have a glass of wine for the holidays. He isn’t thinking straight so he heard differently and thought because it wasn’t alcohol related he could have a glass for the holidays now. My daughter and I told him No!!!!! I hope he can stick to the dietary changes. It means life or death.

Thanks for responding.

Linda

in reply to Lindar1961

Linda - does that mean he can’t go on list until May? Or on transplant list subject to losing 20 pounds?

Miles

Lindar1961 profile image
Lindar1961 in reply to

Miles,

The committee will decide and let us know on Thursday if he gets in the list. Then once we have a yes, he has to wait 6 months before he can get a liver. There is a 6 month waiting period for everyone. No, I don’t think by not losing the 20 lbs will prevent a liver transplant but they want him to be in the best health. I believe.

Once on the list, we wait for our turn for a liver. I guess we will learn more as time goes on. Linda

Linda

in reply to Lindar1961

Ah Ok. Thanks Linda. For us here there is no 6 months waiting, once you’re on the last you’re on! (My first attemptwas after only 6 months). Do they say why a 6 month wait? (None of my business but just intrigued).

Best of luck for Thursday = aaaggghhh the tension of waiting ☹️

Miles

Lindar1961 profile image
Lindar1961 in reply to

I’m glad you don’t have to wait 6 months. We have a 6 month wait unless death is 7 days away. They didn’t say why, we didn’t ask. Linda

in reply to

I meant 6 weeks not 6 months. Aaaghh these darn prograf tablets 😁 - I don’t mean that because prograf is what keeps us transplantees alive!

Miles

Radnor profile image
Radnor

Everything crossed for a big yes! Hazelx

Lindar1961 profile image
Lindar1961

Well, we got a call from

the hospital. My husband was accepted for the transplant list but they want him to reach a BMI of 30–I think it’s a condition to getting a liver. At least there is still hope.

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