Transplant...anyone else worried?

[finished31]

4 years post Liver and getting a bit
worried to say the least. Anyone else?

[GooniesForever]

3 years post-transplant and getting more anxious by the day!

Have your unit given you any guidance?

[Wingedharpy]

Nearly 14 years post transplant here and not really worrying.

Putting all the effort into taking whatever steps I need to, in order to minimise risk as much as possible.

Have had a letter from my unit this week outlying what to do if I think I have it - same as everyone else really - call 111 but tell them you're a transplant recipient.
Keep taking the tablets etc.
Letter gives contact number for transplant Nurses, which I have anyway.

I have such faith in my transplant Consultant and her team, so I know they are just a phone call away if I need advice.

My next outpatient appointment has been changed from face to face to phone consultation and, quite frankly, I'm delighted!
I've been requesting this for a long time but Doc was reluctant as she likes to see her patients in the flesh.

I have a couple of questions regarding blood tests and supply of anti rejection meds but will phone Nurses next week as I'm sure they will have been innundated once those letters went out.

I'm not going out from hereonin and am cleaning things I never dreamt of cleaning in the past eg. light switches, plugs, sockets, glasses - including the arms, TV remote, phones, tablets and their cases, in short, everything that is touched! - I've even washed my door keys!!

The Goverment Coronovirus advice info which was published earlier this week, did say that we transplanted would be written to by "The NHS" with further specific advice for "us".

[Wingedharpy]

Document I'm rambling about is the "Guidance on Social Distancing" and it says :
NHS England will directly contact you with advice on the more stringent measures you can take to keep yourself and others safe.
It'll probably be wash your reading glasses and your door keys🤣🤣🤣🤣
Stay safe my fellow transplantees.

[GeorginaLS]

My mum is just 4 months post kidney - and early 70s, although super fit and healthy. She doesn't appear to have been told to do anything special and for example was at the Renal Unit all morning. She loves her team and they have been great but I am worried she is even leaving her house to go to the hospital each week - don't think virtual consultation has been offered. I love her so much and she is such a grateful recipient of her kidney..managed to avoid dialysis which my aunt did not, and my grandmother died of renal failure. I have not seen my mum in the flesh for two weeks for obv reasons - and she lives 60 miles away from me and the kids. And alone. Any advice- I'd be grateful. I feel very protective. And scared but also conscious of not wanting to make her anxious. She has been living such a full and happy life with this wonderful gift of a new kidney. Thank you and stay healthy all of you.

[Wingedharpy]

@GeorginaLS :
Is your Mum in England?
The document I referred to above was published by Public Health England so would be the appropriate advice to follow if she is.
The letter from my unit (also renal), said that phone appointments were being introduced for those patients who were more than 6 months post transplant.
This would make sense as it takes a while for things to settle down and stabilise post transplant.
Does your Mum have a pre-booked appointment with her renal team or is it just a drop in system?
My letter said, if you need to attend the renal unit you would be given an appointment time.
The idea is to stop having several people sitting together all waiting for consultations in the department.
It's understandable that you are concerned - sometimes I think it's worse for the nearest and dearest than for the patient😉
If she's being followed up weekly, it's likely that she's not at the stage yet where virtual consultation would be appropriate.
That she is super fit and healthy is very good.
The fitter we are, the better position we're in to combat ailments.
The positive thing is, if your DM is having a weekly consultation with a medical team who know her, the more likely anything untoward will be picked up quickly.

Good luck and fingers crossed for you and your Mum👍

[GooniesForever]

Did you all get the NHS Coronavirus service text?

[finished31]

I've had a few texts and 2 letters. Stay safe everyone x

[Wingedharpy]

I've had the text but no letter, as yet.

I'm not sure what benefit the letter will be TBH but understand that those of working age find it helpful for less than sympathetic employers.

Coping with the unwanted, but necessary, house arrest, but am keeping strange hours.

Very glad I have someone in the house who can currently go out and shop (while being stringent in his social distancing ).
It must be very hard for those doing this alone - or, even worse, a handful of bored small children😉

Keep safe, and wash your hands.!

[finished31]

Just checking how everyone is doing?

I've been getting food parcels and priority slots for deliveries.

Stay safe x

[ofwarren]

My son is 5 and had a liver transplant at 6 months old.
We had suspected covid in the house and luckily managed to isolate it. That was 4 weeks ago and he's shown no symptoms.
I can't even imagine when we will be able to stop shielding. I'm guessing we will have to stay at home until a vaccine ☹️

[finished31]

@ofwarren what a trooper....did he get tested?

I'm thinking the same about shielding g. We will probably be the very last group out x

[ofwarren]

No, not tested.
It was me and my other son who were ill and we stayed in the upstairs of the house for 9 days. We are lucky to have 2 bathrooms.

[finished31]

@ofwarren

That's good....what hospital did he have his transplant?

[ofwarren]

He was at Leeds LGI. It was live donor liver from his Dad. His part of the operation was at St James.

[finished31]

Oh wow that's incredible. I had mine in Queen Elizabeth Birmingham.

[GooniesForever]

Hi all, I’ve got (supposedly!) priority slots with all of the supermarkets, or at least they have all emailed me to say so!
However, slots are still limited (or non existent) except for Asda who have given me a recurring weekly slot with free delivery and no minimum spend (through a priority pass, until October) which is fantastic.
Just thought I’d let you all know what they are offering...
Hope you’re all keeping well, x

[finished31]

@GooniesForever the slots took awhile from Sainsburys and Iceland. I do sometimes get emails saying they are releasing slots for certain days.

Like that Asda have given free weekly slots though.

[finished31]

Anyone had any information about the new guidelines? I've had nothing so staying put for now.

Hope your all ok 🌈

[tobee]

Dh is a kidney transplant recipient. He is also back on in centre dialysis (since about the time lockdown started)

He's been climbing the walls to go out. But now the government has said he can, I think he might wait to here from his consultant who he trusts very much.

[tobee]

Also, we've only been able to get priority slots from Tesco, and that was just recently, after phoning them. And heard bog all from anyone else. 🤷🏻‍♀️

[tobee]

Also keep well!

[GooniesForever]

I've has nothing official, I've only seen the government announcement in the press....

However (add a pinch of salt if you want to!!!) my sister-in-law works with and comes across a lot of the healthcare big wigs in London and they seem to be saying the new advice to shielding people is mad and that shielding should continue... they are despairing at the government's approach.

[finished31]

It's so hard. I've been for a drive (passenger) in the car but not out.

Hopefully we will get some clear confirmation soon. My transplant friend lives in Wales and some have had letter to shield until the end of August. 🌈