What next?

[Love101cats]

Now I've got over all the excitement of having an ultrasound and a response to my email to the kidney disease nurse I would like to know what next. The response to my email confirmed that I had two kidneys both the same size, no swelling or stones so I should be over the moon. But why did I suddenly end up in stage 4 kidney failure just a few months ago? My GFR started ar 25 and now is 30.5 which is better and I should be elated. But im not! Its the lack of communication. Ive tried to talk to my g.p. but its got to be avoidance to patients because she is never available. I still don't have a specialist doctor. The only letter I've had was from a dietitian 80 miles away months ago giving me some does and don't. So im in limbo. Is it too much to be told what the next step is or what my kidney problem might be? I should have an appointment with the nurse before the end of the year. The fortnightly blood tests have just stopped about 4 weeks ago. Not a word! I'm afraid that im going to hear those immortal words " with your heart failure and your age (80) almost, we don't really think we should put you through any extra trauma and if you needed surgery we wouldn't do it anyway." That's what they told my husband and he was almost 80 and he died last December of who knows what? I dont want to be grumpy I just want help. Like, if its just aging, then why the sudden drop in GFR ? I had been having twice yearly kidney function blood tests with no problems. So help!

[apopnj01]

you are 80 and your gfr went up that is great - continue to do what you are doing - im thinking all is well - i now many people in the 80s that live a great life style and are very active - dont let anyone get you down -

[Love101cats in reply to apopnj01]

Thank you. I just read a post about aging and kidneys and the final bit of the jigsaw slid into place. After 60 your kidneys do show signs of aging and I had a hell of a year last year caring for my husband with multiorgan failure so what do I expect? So yes ive done well so far and need to keep it up. I need to look at other 80 year old and judge by what I see. Some look like spring chickens, many dont make it into their 80's and others are in nursing homes. Im home alone looking after myself. That must be good.

[apopnj01 in reply to Love101cats]

you are doing fantastic!!

[KristiS_NKF]

Hello Love101cats,

While coming here to get support and advice from the community is a great place to start, no one here can diagnose you. In general there are so many factors that go into diagnosing any stage of kidney disease, that it really is imperative for you to speak more with your doctor.

I know it's frustrating when you aren't getting answers from your doctor, but we have to be our own best advocate and continue to follow up. I suggest calling your local kidney organization in the UK who will likely be able to provide you with some resources and educational materials:

kidneycareuk.org/get-suppor...

Phone: [phone]

Best,

Kristi

[Love100cats in reply to KristiS_NKF]

If only! It sounds so easy but you cry for help and ? G.P. had to fill in on line form which then told me to phone 111. Next I tried phoning for an appointment but was told though she was at work she wasn't making telephone or other appointments. So I tried the kidney nurse via email and she did respond by reminding me I was due a telephone appointment at the end of December. If an ultrasound found nothing what conclusion can I come to? With heart failure and homebound is anyone likely to want to investigate further? What else could they find? How could they find it? I dont have a consultant. The only conversation I've had is with the dietitian and the kidney nurse in the whole of this year. So where do you go with this wall of silence? Health Unlocked.

[KristiS_NKF in reply to Love100cats]

Have you tried calling your the Kidney Care Foundation in the UK? They may be able to assist in connecting you with some resources that can assist. Phone: [phone]

And here is their website: kidneycareuk.org/get-suppor...

[Love100cats in reply to KristiS_NKF]

Thank you. I haven't tried that avenue.