I guess I'm having a bit of a week. Not the best for sure. Sometimes I wake up and wonder if I'll ever feel how I want to feel. I'd be happy at 80% of the person I used to be.
I seem to have a lot of trouble with motivation. I've never been a lazy person and have always been a worker. I've been finding it hard to get out of bed. My ears are still ringing but maybe I'm not focusing on that so much. It's the fatigue and the lack of motivation that I find very difficult.
I guess I'm just asking if anybody felt the same way and whether I still have improvements to look forward to after 16 months. I hope so, but I'm never sure.
Thanks so much,
Andy.
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AndyEssex
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23 Replies
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Hi Andy, you are amazing. You are now one us elite group of transplantees who have been giving a second chance of life. You don't need me to tell you just how very special this gift is, and in a strange sort of way l would like to think that your donor would now be wanting you to use that gift and go out there and embrace life to the fullest. Having said that though the motivation must come from within you.
I really don't want to sound unkind Andy, but do you think a personal kick up the backside is needed here? While getting your body back to full strength, your mind should have been busy generating positivity and looking to the future. My focus was to turn everything that was wrong with my negative life, into positive actions. I am using my doners liver to try and reach out to others in order to raise awareness and speak of the dangers of alcohol abuse.
I think you too might benefit from a fresh challenge. Ask yourself some questions. Where would you like to see yourself in say 12-months time? Where would you like to go? Make a bucket list and go out there and embrace life. Get out there and do something positive.
Make your donor proud. Tomorrow, is the first day of the rest of your life. Embrace it my friend.
While I agree that we all “should” be grabbing life by the bollocks, I certainly have, it not the same for us all. I know someone 2 years post that liver transplant that was really low. Like AndyEssex he couldn’t motivate himsel be bothered? He was humbled by his donation and couldn’t understand why he was so depressed? After some short term counselling and some medium term meds he’s doing great. I’m not a specialist so AndyEssex should mention this when he’s next in clinic or see he’s GP? Life is not a bed of roses for everyone post transplant and we all have background stories to deal with? All the transplant team were very concerned that I, would have emotional issues after transplant as I was only listed for 5 days but almost 6 months on I’m emotionally and mentally great! Again, we all are so very different as we know medically but the emotional side should not be forgotten? We all have a story to tell and sometimes, perhaps, it’s dealing with that story. I’m sure that you’d agree?
I understand everything that you are saying. I have made an amazing recovery. My liver failed at a time when a liver had not been sourced for my blood type. My kidneys then failed. I was on life support for over a month and intensive care for 58 days.
I've alway pushed myself to do as much as I can. I guess today was one of those frustrating days where I just couldn't see the light at the end of the tunnel. When I have days like this I sometimes question whether I am capable of making the recovery that I want. I am driving again which took a long time. My next milestone will be to work again. I'm not sure what I can do or how much of it I can do, but hopefully I will soon be ready. I think maybe I pushed myself too hard to be back to work within the first 12 months.
Hi sorry to read that you are feeling so lethargic. I am 4 months post transplant and am in myself feeling so well compared to how I felt 6 months ago. I can't wait to get going. I am being held back just at the moment by issues that are nothing to do with my transplant. I just wondered if you could be low on some vitamins or have some other problem that could be rectified with medication. It's worth talking to your GP about it and maybe have some blood tests. Hope you feel a lot livelier soon. All the best. Alf
While I agree that we all “should” be grabbing life by the bollocks, I certainly have, it not the same for us all. I know someone 2 years post that liver transplant that was really low. Like AndyEssex he couldn’t motivate himsel be bothered? He was humbled by his donation and couldn’t understand why he was so depressed? After some short term counselling and some medium term meds he’s doing great. I’m not a specialist so AndyEssex should mention this when he’s next in clinic or see he’s GP? Life is not a bed of roses for everyone post transplant and we all have background stories to deal with? All the transplant team were very concerned that I, would have emotional issues after transplant as I was only listed for 5 days but almost 6 months on I’m emotionally and mentally great! Again, we all are so very different as we know medically but the emotional side should not be forgotten? We all have a story to tell and sometimes, perhaps, it’s dealing with that story. I’m sure that you’d agree?
I guess I came across as not giving it a proper go. I feel that sometimes I'm only as good as my immune suppressants let me be. I have days where I feel almost back to my old self and some days where everything is an effort. Obvioulsy everyones journey is different. Sometimes I still try to gauge where I'm at compared to other people who have been through the same. I pushed myself to work too hard during the first 12 months. If I'm honest I don't quite think I'm ready for that just yet but I have just started to drive again and that's a huge step forward.
It's definitely the brain fog and fatigue that gets me on some days. I am on a relatively low dose of Ciclosporin - 125mg daily. It's the lowest I can go according to my blood results.
I totally get it, please don't get me wrong. I was a mess for about eight months. I felt so riddled with guilt and an enormous amount of unworthiness. Even though some people believe that alcohol-related liver disease is self-inflicted and there are some people still out there who believe that such people shouldn't deserve a second chance. That feeling really hammered it home to me. The whole transplant experience was a game changer. What's that saying the the Marines use, "Adapt and overcome". This is what we all have to do, and while I totally understand that we're not all the same, this should be considered within the healing process, post transplant.
This mental aspect is often over looked by the assessment teams.
Yes, I too have a problem with motivation. I need to have a kip afternoon or early evening if I’m busy and generally sleep badly. If I listened to myself I’d spend all day in bed or on the sofa. However I make sure I make any medical appointment for 9 or 10 am and volunteer 1 1/2 days a week to I have to get off my arse. I also work in our shop on Sundays to have to get up relatively early. Basically I get up early half the week. Once I’m dressed I’m more likely to then go out shopping or to the gym!
I think you should plan one or two things which you MUST stick to.
My sleep is never great either. I sweat and have bizarre but realistic dreams every night without fail. I never sleep for more than an hour before waking up.
I am now driving again and I go out every day regardless of how I feel. Work is my next aim. I used to put so much pressure on myself to get back to work within 12 months but I'm a little more relaxed about it now, even though I still don't want to leave it too long.
Well done Isabelle. I totally agree with you and how the lack of motivation can really hold us back.
The plethora of drugs we have to take post opp don't help any either.
What some people may forget to realise is that the medications used to prevent rejection can alter the way hepatocytes in the liver handle sugars and drive overproduction and release of glucose into the blood. Also patients with diabetic risks before transplant are more likely to experience it after transplant. The upshot of the transplant is that it can therefore cause some people to suffer with type 2 diabetes. This in turn can make a person feel lethargic and tired all the time. I would recommend to anyone who has undergone a liver transplant to be checked for type 2 diabetes post transplant as this could become an underlying factor.
• in reply to
Hi Ricchard
Re diabetes -I had type 2 for 15/20 years before tp treated with metformin. Post tp (now 4 months) no metformin but insulin injections. No lethagy at all. Tiredness in evening yes. But as you say we are all different 😁
BTW I have niggling little problems which can be dispiriting, painful hands and shoulders due to Advagraph and a constant urinary infection I probably picked up in hospital which I seem to have for life. Also due to HE I suffered slight brain damage which means I can’t find my words and slur a little when I talk which can be very frustrating . However I’m so lucky as, when I look at my hubby he is so relieved I made it and would be completely lost on so many levels without me, and my girls would be so sad that my frustrations and odd pains generally pale into insignificance.
Yes, I think in the end all of us have a moan and niggling problems sometimes get us down. As you’ve said Isabelle2 they all do, eventually, pale into insignificance. I hope those niggles of your get better and don’t let the @$#%?!¥ get you down 😊
Hi Andy 😊 please don't be so hard on yourself I go each day at a time we aren't promised tomorrow, so if I want to be a lazy twat I will, I won't feel guilty anymore I am sure my donor had lazy days, good, bad, sad, happy, fun etc etc ... I am sick of people throwing the guilt word around we don't know what kind of person our donors were any they will never know us but they and their families were kind enough to give us a second chance
But I am just grateful to be independent again, for my husband not to be wiping my arse or washing me, dressing me that I can be left alone to walk around the house naked, or dance like a lunatic or sleep all day 😂
I am 2 years and 4 months post now and I have accepted I am never never going to be the person I was pre illness and you know what I am happy about that my eyes are wide open to what is important now and I thank the world for that x
I really hope you start to accept/feel somewhat better sooner rather than later
And I seen a psychologist this year because I got a wall through people trying to make me feel guilty about the donor so if you need a pointer in the right direction then see your GP x
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