Catch up

Hi all hope everyone is still fighting as best they can.

It's been a long stressful few months with 2 weekly ascetic drains, trips to Birmingham and living with all that entails.

He's had his assessment last month but wasn't listed yet. They need to make sure he's fit enough for theop to review again in October. He has been told to eat a high protein diet to build up muscles and strength. The anethiatist saw a abnormality not his heart scan that they want to check out so he's been referred to a cardiologist near where we live which is good. ( Referral only happened last week as I chased it. Administration error again)

Trying to be positiveand hope that October's decision will be a positive one. Scariest thing to hear from specialists doctors that your husband defiantly needs a new liver to survive and may not be fit enough to have the opportunity of a new one.

You learn so much about things.

Who your friends really are!! That's a tough one and also that the best person to fight for us is us. Ask whatever you want to ask, don't be afraid to challenge and chase hospitals and doctors.

Remember that the person who knows the illness the best and how if affects you is you.

Keep fighting.

Love to all

Xx

13 Replies

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  • Wise words poppy.

    Being ill enough for transplant and healthy enough too is a tightrope. Not many people seem to get straight through from assessment to listed without some further tests. I think it's possibly the most critical time when it most in the hands of the patient. From initial assessment to possible transplant the patient MUST stick to high protein, low sodium and FORCE whatever they can out of their body to stay as fit as possible. Staying on top of this really can be the difference between life and death.

    It's also a really important time to stay positive, even try a bit of humour as I believe mental strength is whats needed to keep up the physical strength. Make the most of the weather, I had my transplant in November (2014), and during the months through the summer during assessment and listing we would go for walks and then cream teas, or ice cream, etc most days.

    Good Luck!

  • Thank you!! It's so tough but got to keep pushing forward. I have so much respect for the liver now. Xx

  • Hi Rodeojoe, it's been awhile. Since I could talk to anybody. Still in the same situation in fact a little worse. Dealing with the 25-year-old son who has no patience or tolerance for anything just finish schooling it has five years of friendship and has dealing with the 25-year-old son who has no patience or tolerance for anything just finish schooling it has five years of friendship in Canada 5 years of apprenticeship before he can take his final license exam. The awful thing about this disease that you never know what Organ is going to be affected. It seems that you have better medical assistance then Canadians do. I don't know I have no family that could careless. They are mean cruel and ignorant I did have a partner in a long time go but I had to kick him out because he was so abusive he couldn't understand why you can do the things that I did before well I just said wake up and smell the coffee. my liver is damaged my pancreas is damaged , and I'm blind so he took off with another woman took my daughter out because she was following in his footsteps being abusive. Now I have to deal with my son's acting the same way. He has no patience although he has Tourette and Asperger symdrome. I just kind a want him to move out because he's literally screaming in my ear swearing at me doesn't see that he's swearing says he's not but he is it's not the same person . But I'll keep pushing as I always do, taking one day at a time!❣🇨🇦

  • hi...in exactly same position as you with my husband...assessed for transplant but not on list because has developed a leaky heart valve. Cardiologists have refused in Cardiff so we await to see what London may do?? Ascitiies big prob..Also told to build up weight...im on sick from work as this has been going on for two years.He had tips op which failed...There is a new thing for ascitirs called the aqua pump....we were told they don't do it in wales bit we will ask next time in London...all the best..i know how you feel

  • Ascetis really is horrible. We have a few days of him being in OK health before it starts to cause problems again. He can't have tips cos he has HE. I have heard of the pump it sounds great but I don't know many hospitals that will fund it.

    Is it just me or is hospital just really stressful. I feel loads more on edge when he is in hospital as I don't trust them. Hate leaving him there but no other way.

    Got to keep fighting.

    Xx

  • Hi Poppy , I'm in a similar situation ! The HE makes everything so much more difficult and its hard to leave someone when they are so vulnerable and confused. In my experience general health professionals do not have the time or the knowledge to manage HE , others make value judgements in relation to causes of liver disease which often results in poor care .

    Sending good wishes😊

  • I completely agree. The other day I left him to go out to the doctors and he said goodbye. 10 minutes later he text me asking where I am? He gets scared. It's horrible seeing my incredibly intelligent husband like that. I agree about the judgement Alcoholism is an illness at the end of the day.

    Sending good wishes to you to hun

    Xx

  • sorry about spelling.was too quick

  • Dear Poppy,

    It is now a race against time for you both - you are doing the right thing by being on top of the hospital and referrals - left alone - you would end up being lost in the system... We have had delays after delays for my husband's next op because of things not being put into place properly...

    It's all like a domino effect - one wrong move creates so many complications and then your dealing with adverse effects of all these...

    You seem to have a good idea of where you are heading - keep the spirit up Hun and don't stop asking questions.

    I have found that email is a much better way of communicating with some of the team😊

    Sending you lots and lots of love,

    Pear

  • Thank you.

    Xx

  • It is a bizarre situation, you feel ill, you run out of energy, every day someone asks me how I'm feeling/doing, if I'm quite I'm told I'm being grumpy, If I'm really quite I must be feeling worst, its a crappy way to live!

    I think about the transplant, I think about my health, I see the deterioration in my results.

    It is a time when you feel at your lowest, but you have to find the last little bit inside, exercise within your limits, a little and often, if you don't feel like it don't. The scariest moment for me was when I was told, you can see the muscle wastage in your upper body, now consider you heart which is a muscle, and your lungs which are driven by a muscle.........aaarrrgghhh, that focused the mind!

    I had my assesment in Kings and was in for 3 days, the same week I was notified I was listed, I think my current condition got the ball rolling sooner rather than later.

    Interesting that you mention friends, there are certainly friends and relatives that I have put a little more distance to, the only way I can explain it is, some conversations last an hour but feel like a 10 min catch up and are easy, the others are 10 mins that feel like an hour, you come away from the conversation thinking 'well that was pretty pointless', there are people who will take your energy, leave you just thinking why did I make that call, its not that they are bad people, you just don't need them around during this time.

    I hope every thing comes together and the listing goes well.

  • When I was really ill, pre, during and post transplant I had a strange relationship with some of my closest friends.

    Out of concern they would want to ask me how I was, what was going to happen, how long it would take etc... All simple questions but so difficult to answer. I got a bit sick of it, it was all I was talking about. So I backed off and started to avoid them. Then they started asking family and my partner all the same stuff.

    It came to a bit of a head when my best friend decided to phone my brother and ask him how I was after receiving the news I needed a transplant. The problem was my brother was working away for the week in Austria and we'd decided to not tell him until he came back. So he panicked and got home on the next flight although really there was no need.

    I know it's all well intended but I started getting fed up with it all, and exhausted with trying to keep everyone up to date. It was getting to the point where when my partner was in hospital as a visitor friends were phoning for long chats. I'm sure they all still think I'm a miserable sod. But you've got do do what you've got to do.

  • With us people either avoid us like the plague or try to give us well meaning but not particularly help full advice. Not easy when you feeling awful and just want to relax in peace.

    I'm very protective over Hubby so anyone from his drinking past especially I keep at arms length. I get what you mean though its tough having to explain everything to everyone all the time. I know they mean well but it is exhausting almost like you have to be strong for other people too.

    On his good days we do try to have a 'illness free day'. Try and do normal things for a while even if that I just food shopping or cleaning. Lol.

    Xx

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