Covid-19 lock down shouldn’t have included this... - Liver4Life

Liver4Life

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Covid-19 lock down shouldn’t have included this site as well.

Richard-Allen profile image
5 Replies

This site is so quiet. It’s a shame the modulators can’t add something to spice things up.

There’s plenty of liver news going on out there but nothing seems to be spoken of or reported about on here. The modulators say they are passionate about liver health, yet never seem to post anything or update this site. It’s if they’ve started the site up, but then walked away.

Come on, guys. Have some input and get people talking.

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Richard-Allen profile image
Richard-Allen
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TT-2018 profile image
TT-2018

Everything seems to have gone quiet right now, it’s like normal life has gone into suspension. But hey, mentally, that is probably the issue because health remains with us all the time.

Cancer and heart disease get plenty of publicity but liver and kidney problems seem to have remained in the background. I really feel for the people who are waiting on a transplant list right now. Prior to my transplant, I spent around 100 days in hospital, over a 30 month period, I imagine that would come with a host of issues now.

How is everyone else with ALD or post transplant coping?

I am due an appointment at the Royal Free next Friday and as of yet, no instructions about how I should proceed. I am also due to collect my six month supply of medication, although, I still have a few months supply at home.

in reply toTT-2018

Hello I just phoned my local hospital who work with Royal free and they ordered my meds. They sent 3 months supply by courier.

For my last appointment I was given a phone consultation.

As you say, it must be awful for the folks who are waiting on transplant list.

Stay well and stay safe my friend xxxx

Jaycee

TT-2018 profile image
TT-2018 in reply to

Hi Jaycee,

I am between two hospitals right now and had my last appointment at the local hospital in February. They offered to order in the medication but I explained that I had enough to see me through to my appointment at the Royal Free in May.

I did get a shielding letter from them saying that they will sort out any blood tests etc, should I have an appointment in London.

I will phone them on Monday morning and see what happens.

I hope that they don’t put me on the scales because it’s difficult to keep out the fridge and biscuit tin at the moment.

I hope that you are keeping well?

Stay safe and sane,

Mark xx

in reply toTT-2018

Oh Mark, seriously, I am refusing to look at the scales I have put on to much weight. I think it must be the same for everyone. I seem to remember I was keeping my weight stable before transplant. I feel for those waiting now, it must be dreadful all this. No exercise, and just staying in cooking and eating !!

Jaycee

TT-2018 profile image
TT-2018 in reply to

Jaycee,

I went to my local hospital for a blood test last Friday, it was interesting. No parking charges and straight through Outpatients, to the blood room.

It was definitely strange, a bit like going into a school during the holidays. The only people who were there, was in the fracture clinic. In and out in 10 minutes.

I then had a call from the transplant coordinator from the Royal Free, my Heptologist is working locally to him.

They will send out my medication by courier this week.

Hopefully everything is going well with you? It’s definitely great to have the sunshine ☀️.

Mark

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