Kidney Patient Guide

Extra advice from the kidney charities too...

https://www.kidneycareuk.org/news-and-c ... us-advice/

I am a little surprised following a phone call with my renal unit today, I left a message a few days ago telling them that I only have enough adaport and MMF to last for 3 more weeks (as the remaining 2onths supply is at my work which has closed due to this virus (I couldn't get it all home as I work near the hospital). I work in central London but my work told me 2 weeks ago to work from home until further notice due to all this.

The nurse in question said that I would have to travel in to the hospital pharmacy after this weekend, meaning I would have to get two underground Trains to get there, I asked was there any other way and she said most likely not but she would have to check if they could make an exception to get them delivered.

Whilst I understand it wouldn't be easy sending out every patients prescriptions I wouldn't have thought they would want us travelling into central London from Essex when we are now being told to stay at home.

Very worried and anxious like everyone else. At the moment extreme social distancing, not shopping, just using on line shop. Worry about not getting enough exercise. Three plus years post transplant and have been so lucky to be very well. I am 72 and well supported by my family so all in all very fortunate. Would really like some definitive advice, so hope that is forthcoming g next week. Take care everyone, keep well.

Hi Millimurvie,

I don't think there will be any more definitive advise other then what we have already been given.
The name of the game is, 'Avoid the Virus', normal surgical masks are not a lot of good, the most effective way is as currently recommended. - https://www.nhs.uk/conditions/coronavirus-covid-19/

Best wishes

Thank you, have looked at the link, all good stuff but daunting. Needs must.
Best wishes

The latest advice which seems to go further than the NHS advice, references the NHS letter that is going to be sent out this week and strongly suggests that those in the groups listed as extremely vunerable, which includes transplant patients, should not go out for 12 weeks:

"You are strongly advised to stay at home at all times and avoid any face-to-face contact for a period of at least 12 weeks from the day you receive your letter. Please note that this period of time could change."

That is a very stringent requirement and perhaps not everyone will be able to comply with it. There is talk of outside help in the document - but even so.

. My own view, as a 13 year transplant patient, is that I will do all I possibly can to try to avoid catching Coronavirus. Stay safe everyone.

The document is here

https://www.gov.uk/government/publicati ... m-covid-19

Well did we all get our texts/letters today?

I, and my family, have basically been doing that for 10 days already.

It's fine, although boring, for me as a transplant patient.

It's my poor kids, who've given up all social life, to help protect their Dad. They have given up a chunk of their lives.

Whatever the papers say, there is a lot of good in the younger generation today.

Stay safe everyone. Lets hope we all get through this.

Love to you all.

Chris

Hi, everyone seems to be getting their letter or text message but I haven't had anything and don't know who to contact about this?

DeanH wrote:Hi, everyone seems to be getting their letter or text message but I haven't had anything and don't know who to contact about this?

I shouldn't worry about it the information is as already broadcast.

I haven’t had the letter yet either. I have looked at the website so I know what it will say.
I wanted to receive the letter to be sure I was registered as vulnerable. (I know I am post transplant I suspect having being registered may help n the coming weeks).I can then register on the government web site. I would also like to be registered as a vulnerable customer with Sainsbury’s who will then try and help with home deliveries.

I saw advice that says if you haven’t had a letter by Sunday to contact your GP.



To be honest I look and feel healthy. Under normal circumstances “vulnerable “ is not a term I’d use to describe myself. However we live in unusual times........

Stay safe.
Sue

I was also expecting to register on the government website.
That's the UK government website by the way.

Apparent we are not a "United Kingdom" it seems.
You can only register if you live in England.
Us in Wales have been ignored..as has our Scotland friends.

Doe's this help? https://gov.wales/coronavirus-action-plan

Just got off the phone to my GPs surgery to ask when my letter would arrive telling me to shield for 12 weeks. The secretary who answered said that I wasn’t on the list as although “I can see from your record that you’ve had a kidney transplant”, they didn’t consider me to be in the Extremely Vulnerable group.

I wasn’t aware there were any guidelines from the government or the NHS that would class transplant recipients as anything other than “Extremely Vulnerable.” Does anybody else have any details, or have you been told anything similar by your GP?

I would contact your transplant team, you are definitely in the vulnerable group.

Having said that, there is nothing more to say, other than what has been broadcast.

Have you looked at this? - https://www.kidneycareuk.org/news-and-c ... us-advice/

This was recommended by the dialysis unit.

Yes, I was reading it earlier.

I actually started isolating/shielding last Monday on the assumption that I was in the group and told my workplace I’d be off for 12-weeks. They asked for a copy of the letter when it arrived which is why I started chasing it today.

Very surprised to be told I wasn’t included on the list (as far as my GP is concerned) which is why I was wondering if they’d been issued with more specific guidance. But I’ve seen the letter that NHS England sent to GPs and it doesn’t look that way.

Anyway, I’ve asked that my GP look at it again and they’ve said they’ll get back to me. If they still say I’m not in the Extremely Vulnerable group I’ll get in touch my Renal Unit (who posted me my medication for the next three months last week, coincidentally).