Search found 3465 matches

by JMan
Tue Apr 18, 2023 7:43 am
Forum: The KPG Forum
Topic: "Patients Know Best"
Replies: 8
Views: 16395

Re: "Patients Know Best"

A lot! Another issue is updates are slower. Usually with PV I'd have my results by now. Samples at the labs around midday yesterday, as we take them straight to the lab! I'd have a notification waiting for me in the morning. Sometimes Same Day! This morning, nothing! The bloody thing is 13 years old !
by JMan
Sun Apr 16, 2023 6:41 pm
Forum: The KPG Forum
Topic: Spring Boosters
Replies: 3
Views: 9182

Spring Boosters

https://www.kidney.org.uk/News/coronavi ... r_patients

I've had a couple of texts, and I think a letter saying a further invite will be sent out.
by JMan
Sun Apr 16, 2023 5:46 pm
Forum: The KPG Forum
Topic: "Patients Know Best"
Replies: 8
Views: 16395

Re: "Patients Know Best"

Its absolute shite I've been on one or 2 of the 'feedback/patient participation workshops. (about 150 people on). https://youtu.be/zOQmrb5-O30 CRINGEWORTHY Basically going over and over their 'sales pitch' of how it works at the moment. I was due to do a 1to1 with one of the team of PKB but they arr...
by JMan
Thu Apr 13, 2023 2:12 pm
Forum: The KPG Forum
Topic: existing-pip-claimants-may-lose-support-group-status-as-early-as-2026
Replies: 0
Views: 28946

existing-pip-claimants-may-lose-support-group-status-as-early-as-2026

https://www.benefitsandwork.co.uk/news/existing-pip-claimants-may-lose-support-group-status-as-early-as-2026?utm_source=iContact&utm_medium=email&utm_campaign=Benefits%20and%20Work&utm_content=V2%2014%20April%202023%20News This is relevant if your also claiming Universal Credit. The B***...
by JMan
Sun Apr 09, 2023 6:15 pm
Forum: The KPG Forum
Topic: New to forum
Replies: 12
Views: 12578

Re: New to forum

Welcome to the forum. Its daunting, even terrifying, but treatments are good these days. Your GP may refer you to a neurologist in time, (kidney specialist) But this is might not just be yet as you still have plenty of kidney function We have 2 fantastic support charities in the UK as well, KidneyCa...
by JMan
Sun Apr 09, 2023 6:12 pm
Forum: The KPG Forum
Topic: End of mask wearing
Replies: 4
Views: 6519

Re: End of mask wearing

Still got signs up, and staff are wearing if they visit (home dialysis) everyone was at my clinic this morning. Chemist, staff are still wearing when serving. Also I've received a text message saying that I will be invited to have a 'spring booster'. My carer recently tested positive. as well From G...
by JMan
Tue Jan 31, 2023 7:38 am
Forum: The KPG Forum
Topic: suggestion... how about introducing ourselves??
Replies: 946
Views: 2272895

Re: suggestion... how about introducing ourselves??

Low iron levels will make you feel really lousy. And totally out of energy. Iron There's no reason in time you won't be able to enjoy exercise again. But if your levels continue to go down you may be looking at treatment options. Its scary as hell, but as humans we're very good at adapting. Even if ...
by JMan
Fri Jan 06, 2023 5:19 pm
Forum: The KPG Forum
Topic: A question I never thought I'd ask but.......
Replies: 13
Views: 19365

Re: A question I never thought I'd ask but.......

I would see it a great shame to see the forum go. It serves a purpose. In reality not everyone is on social media, for whatever reason. I hate it but use it for work and it acts as a contact tool cos every other bugger is using it! I rarely post on the groups unless I've got a question, or its a cur...
by JMan
Tue Aug 23, 2022 3:39 pm
Forum: The KPG Forum
Topic: Cost of living Food - Community Grocers
Replies: 1
Views: 4881

Cost of living Food - Community Grocers

Cost of living - FOOD Hi all, just wanted to mention, you may have a Community Grocers in your area. https://communitygrocery.org.uk/how-we-can-help/ These are NOT food banks, more of a co op grocery, and backed by the All Nations churches. You register with an annual fee, (£5) to become part of a c...
by JMan
Sat Aug 06, 2022 7:38 am
Forum: The KPG Forum
Topic: Long Covid - the risks
Replies: 1
Views: 5110

Long Covid - the risks

https://health-study.joinzoe.com/blog/covid-long-covid-risk#part-6?utm_source=0408Newsletter&utm_medium=Mailchimp&utm_campaign=Newsletter_Weekly Not that I've got long covid, but friends have, and its massively effecting their life daily My only comparison is perhaps my recovery from meningi...
by JMan
Sun Mar 13, 2022 5:32 pm
Forum: The KPG Forum
Topic: How “back to normal” are you?
Replies: 4
Views: 6642

Re: How “back to normal” are you?

A little more. Mask in local shops, and taxis. Cases are going up nationally, even tho they are coming down in the UK. The gov has continued to BADLY report stats (see ZOE studies site) I've been to a few small meetings and even yoga class unmasked. Not received any updates from hospital but going i...
by JMan
Tue Dec 28, 2021 8:44 am
Forum: The KPG Forum
Topic: Rubbish veins
Replies: 5
Views: 9565

Re: Rubbish veins

It seems like you need a sit down with whoever is your senior consultant/team to have a 'plan of action' to try and find some solutions. There's usually a way..
This may be tough during covid when appointments are rare as hens teeth, but wish you well.
by JMan
Tue Aug 31, 2021 5:00 pm
Forum: The KPG Forum
Topic: My latest allergy - Tinzaparin!
Replies: 3
Views: 6727

Re: My latest allergy - Tinzaparin!

Its gone all quiet so I suspect that she's had a verbal from the manager.
I was ready to take it to upper management and I think they know me well enough to try and avoid that.
Just glad to be back on Heparin
by JMan
Fri Aug 27, 2021 12:54 pm
Forum: The KPG Forum
Topic: My latest allergy - Tinzaparin!
Replies: 3
Views: 6727

My latest allergy - Tinzaparin!

Well that was fun. A week of wondering round feeling like a cross between someone on sedatives, and someone whose drink had been spiked! New consultant asked why I was still on Heparin, I said, well I never swapped over to Tinze. I think I might have had it one or twice on holiday. (where the unit l...
by JMan
Wed Aug 18, 2021 5:10 pm
Forum: The KPG Forum
Topic: Taking its toll
Replies: 3
Views: 6871

Taking its toll

Seems dialysis is starting to take its toll more and more. After dialysis anxiety and indecision kick in, especially if I have to go anywhere after treatment, which I avoid most days. And even more of a problem if I'm on my own. A session day without a 2 hour kip means a few days to recover. Next da...