I have not been on here for a longtime. But this place adopted me for quite a few years and became my hub for salvation. I am totally indebted to the good folk on here who had helped me through the darkest moments of my life...
My husband went through numerous transplants/operations and we are in a much better place but still facing challenges at every corner...
I am missing lots of my friends from here and really do wish that you are all doing well. Has anyone heard from Kimberly? I have tried to send messages but I have not had any response.
Reading the many posts, I can see that this place remains a safety net for so many.
Wishing you all are keeping safe and well.
Pear
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pear-shaped
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Hi pear shaped, nice to see your post and glad to hear things are finally settling down for your husband. We're in pretty much the same position now. 7 years post transplant and 5 years post stroke we are getting back to routine survival. We have the odd hickup like the Covid pandemic that wobbles our world! He had renal failure in April and ended up being admitted to the dreaded hospital. He stayed for a week whilst they worked on a deepseated infection. Tested him a couple of times for Covid, thankfully all negative. He was rushed out of hospital at the earliest moment to continue at home with daily visit to outreach clean section of hospital for iv treatments. He still has his nephrostomy tube into his right kidney and catheter. He's still on 2 antibiotics. Fingers crossed we will overcome this hurdle too. Stay safe and take care if yourselves. 😊🙄☺
A mum of another transplant patient had said to me 'once a transplant patient... Always a transplant patient'. Here's hoping he recovers from this renal problem quickly. My husband had to go in last week, (he had another hernia repair, 8 hernias, at the start of Feb) had really terrible abdominal pain, they are not sure what is causing it but think it could be the bowel area, where they had to push it all back in. Anyway, following a CT, they have now found that the conduit they built as the artery has contracted/shrunk... So here we go again!
Keep us posted on how he is getting on...
We know quite a few patients who have lost their lives, not from Covid, but due to the fact they have not had the treatment they have been waiting for because of the Covid. This saddens me so much. We have been shielding since Feb - so its been a longtime, however thinking of how much people are suffering makes our whims seem pretty futile.
I pray on the go for all the people who have lost loved ones and for those suffering...
Hi, Pear. You have both been through the mill but are obviously hanging on in there, which we all are. I think this is a club for liver transplantee. It's very exclusive. The most important thing is we the carers of the tranplantees are not alone. You know what its like to sit there worrying day and night, we've all been there too. Maybe things have worked out for Kimberly and she has found some sort of normality. There are times when we don't need this group for support. I am guilty of that.
Since my husband had his stroke you'd think it only affected his sight. He is classed as blind sight impaired but it's affected him mentally definately. People don't see it because they don't know him but after 42 years of marriage I see it. He's a bit jeckle and Hyde, can be very stubborn and totally unreasonable like a child. It's tempting to just bugger off! But I always come back.... ☹
We were talking yesterday that the original husband is back after years away. We mean he's on 3 different antibiotics at the moment and he is his normal, mild mannered enthusiastic self enjoying life and being active. Just shows you how infections can set in and wreak havoc with emotions and attitudes!
They are all highly unusual because they are on immune suppressants. Nothing is ever presented A typically ever again. Sometimes the Drs forget that and it's our place to remind them. We are the guardians of the liver!
Stay strong and remember you are not alone. You can message me any time for a chat and a grumble. I can't solve everything but I can listen when I need to.
Stay safe 💖
Welcome back Pear, good to see you here.
Kimberly has not posted for a long time, we miss her too!
It's been such a roller coaster. Having rejection, various treatments, immune suppression issues and hernia issues... Has been something else. Since his Encephalopathy was cured, he has now forgotten most of the past 26 years. Some he chooses not to remember. He refuses support for this and with Covid keeping us shielding, seems not so important.
He has found friends from 30 plus years ago - these people he has not spoken to since he left school/college. Now he spends hours talking to them...
I am so grateful for all that we have been blessed with, I think I am just tired and feeling a little lost, maybe that it why I have comeback, I feel safe here!
It sounds as though his life has changed quite drastically and for you everything that has happened will always be there. I am sorry it must be a very difficult situation for you to deal with, especially now as we are all in a home together without a break. Are you able to get out for a walk just to free your mind a little?
As all immune suppressed have in common - we have been housebound since 1st Feb, as he had a 8+ hernia repair surgery done so was already told to isolate from that, then told to shield with the Covid outbreak... So we have all been isolating to protect him. He is super clingy, can't stand me being away from him for too long, gets very frantic. We have recently been told we could go for walks with masks on. So that has been nice.
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Unsure,about proof of illness, diagnosis forms.
Scared :(
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