I thought I would let you know after a couple of really horrid weeks that saw him shaking and just feeling really unwell these last couple of days he appears to have perked up.
He actually said that if he was told,that how he is feeling now that is how,he would be for the rest of his life he would settle for it.
He is no where near before his illness but the change to me is amazing. It will be interesting to see what the blood results say next week. I cannot believe the difference. He just said to me “I feel fine”.
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Bs1524
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Hi
That is such good news, I can understand how it feels I got there as well on my journey
I hope the blood tests reflect the improvement, as that will mean they can refine things even more
I hope you a coping well with covid and keep yourselves safe
The change is like a 360 from last week I know it may change but I will take how he is now it is almost the old him. He also seems to have come to an acceptance within himself that when he gets his transplant assessment he may go on the list or he may not. He is taking the not as a sign he is too well.
My husband just said he feels like a fraud as he feels so much better. Although he was feeling so poorly any improvement would seem a lot. I am worrying now because he seems to think he is getting better as in his liver is getting better. Am I the one who has got it wrong that decompensated cirrhotic liver is not going to get better? Will his feeling better like this reduce his chances of going on the list?
No it will not get better, feeling better is just the treatment and increases his chances of transplant as you have be well
Not right till the end (About 1 month to live) has I really slowed down.
I was sleeping more and my strength was less than it used to be but, I generally felt OK
It was when the consultant put things in his notes for test requirements in Capitals did I guess I was getting worse
I must mention that while at this stage any change in my routine, i.e. a weekend away would put me into an HE attack. My balance of food and exertion etc was a fine
balance
I finished up being blue lighted into hospital twice while away
In the end my portal vein gave up because the liver slowly got more cirrhotic and that was that, transplant here I come
Thanks David, he was saying last night he feels well enough to go on holiday if we were not on lockdown. It really helps that you can related to how he is I meanwhile am not sure I am coming or going x
Just be aware that they can have these good spells - hubby has them and has said "I wonder if I could hold a job down?" then wham down again. Just be aware that he will probably dip again, having cirrhosis is a roller coaster some weeks you can feel 'ok' other weeks almost wiped out.
Hubby had a brilliant spell since stopping his sugar in drinks after the early diabetes diagnosis in January - got out walking nearly every day doing anything between 1, 3, 5, 8 and even 10 miles daily then nope back to exhausted every day again, sleep disturbed nights, up for breakfast then immediately back to bed. Last few days hubby has had a rubbish time with fatigue and today brighter again.
Not wanting to throw cold water on his 'recovery' but he will get better periods and then probably rubbish periods too.
my husband has wondered if he could work too. He seems to have ignored the fact that just like your husband goes back to bed having had breakfast and sleeps on and off throughout the day.
Great that your husband doing so well and feeling better👍 Sounds like he is ready for his transplant assessment! I am 5 months post transplant today and am so grateful for this gift. When they first suggested transplant to me I personally did not feel strong enough both physically and mentally to go ahead with the assessment. I worked hard to get well physically and I have some amazing friends who played good cop and bad cop to get me to the right place mentally And also my hepatology team! Sounds like your husband is in that place and that is so good! I went for the assessment feeling positive but took it one step at a time. Everyone is supportive as they all really want you To get the transplant! It sounds like you are doing a brilliant job supporting him! Stay positive and stay well and you will get there🙏👍
Such wonderful news for everyone to read about especially with Covid all around us! It's so lovely to have something to smile for so thank you for sharing!
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