Chronic Kidney Disease

CountryMimi

@FOXYLADY71

Oh gosh, really not getting any easier for you is it 😞 have they told you whether the lesions are related to the vasculitis? 

Do you find the belt helps much?

It must be really difficult with the coccyx pain - I suppose it does kind of make sense though.

Hope they refer you to women's physio for the incontinence - my physiotherapist is absolutely amazing, she goes into everything with detail in a way that you can understand - draws diagrams, has little models to show me and even sends me away with notes from the sessions so that I can sit and read them in my own time - it can be quite overwhelming, particularly when you're under the care of numerous departments

Really really hope your appointment with the GP today has a good outcome and is helpful 🥰

FOXYLADY71

not had any phone-call as yet and still waiting. I am afraid your treatment is better than mine and in fact I have been undergoing a complaint with the Trust since 2022. I have a large case going on as we speak. This is the hospital that has allowed babies to die as shown on television and I am communicating with my MP on my non treatment and bad record keeping etc....it is one of the reasons as well not to have treatment with them but I am not concerned on that as I do not wish to have it anyway and just want quality of life. I am just waiting to see how they will deal with my health once I determine the problems. The dermatologist did not give a diagnoses and she did not deal with me in a caring way, she even ordered my Husband out of the room saying it was too small for the both of us when she had just seen a patient enter in a wheelchair with her Hubby. I took this up saying this was discrimination to me with an invisible illness. oh it goes on, but I have contact with the Ombudsman and Commissioners Office to help. Hope you are well today and better in yourself. So pleased you have the care you deserve. x

CountryMimi

@FOXYLADY71

Hoping they'll ring you today xxx

That is horrendous about the babies 🥺 those poor families! and I'm so sorry to hear that you're having a battle with them! It must be so worrying for you! You're doing the right thing by having contacted your local MP as they can often pave the way for change - my sister had an issue with the NHS, contacted local MP at the time and had a good response which turned into a good result - sometimes I think that we forget that MPs are there to fight for our rights too.

I am just grateful that my problems aren't worse than they are and I have my amazing mum and brother and sister for support as well as a few close friends, not to mention you guys 💜

Sending lots of love xxx

FOXYLADY71

Had phone call at 7.30 last night.anyway GP has made appointment for me.so good news .can no talk about my weeing. My MPs have also been good in helping. My battle continues and I hope will turn out good eventually. It's not good when you are unwell dealing with paperwork.it has been a worry but determined to see it through. My GP also said she and her husband who is also my GP are thinking of retiring as doctors as they have had enough. Great that's all I need.what is going on? We won't have any doctors soon. Xx

CountryMimi

Yaaay some progress!!

Sending you lots of love and here if you need to talk, we're all in the same storm, different boat 💖

Sorry to read about GPs thinking of retiring, thats got to be worrying! Completely understand as it can be so difficult to find a Dr that you can trust and build that bond with. A few years ago my mum, sister and I all found a Dr at the practice we had been going to for years, she went above and beyond - was amazing - even the smallest of details, she would remember, regardless of whether it was medically related or not. If I went, she would ask how my mum was doing, if my mum went, she would ask how we were all doing. I moved across the town I was in at the time and wasn't able to stay at the practice and it really bothered me xxx

FOXYLADY71

Hubby visited GP today with important paperwork they needed to scan and receptionists were so rude to him and he blew his top. I think he is going to speak with GP about it  there were others complaining of wrong tablets being prescribed etc. He said it was bedlam with 25 in the queue all moaning. I am on a local neighbour website and I am reading people moaning about our hospital and asking for others to join up to bring to MP attention. It's just awfull. Did you see news about kidney patients on telly only saying no money for the patients treatments and badgering government. well at least I am saving them money by not having dialysis.

FOXYLADY71

Had phone call at 7.30 last night.anyway GP has made appointment for me.so good news .can no talk about my weeing. My MPs have also been good in helping. My battle continues and I hope will turn out good eventually. It's not good when you are unwell dealing with paperwork.it has been a worry but determined to see it through. My GP also said she and her husband who is also my GP are thinking of retiring as doctors as they have had enough. Great that's all I need.what is going on? We won't have any doctors soon. Xx

CountryMimi

I just don't understand it, why do they feel the need to be rude. It must be so frustrating for you, all you want is to be cared for and to know you're being cared for 😔

No, I haven't seen it, but that is shocking! That's neglecting people with serious illnesses. I know people and know of people who are in dire need of dialysis to treat them and I can only imagine how they're feeling at the moment if they know the news! It does worry me going forward!

I don't blame them wanting to retire, though it has to be worrying for you if you have a good relationship with them