Search found 23 matches

by JohnW99
Wed Feb 10, 2021 11:19 pm
Forum: The KPG Forum
Topic: Stage 3 no protein in urine
Replies: 5
Views: 1006

Re: Stage 3 no protein in urine

Hi

I have never had any protein in my urine, this surprised my nephrologist but eventually I was diagnosed with ADTKD-UMOD. I don't know if other conditions give similar symptoms.

John
by JohnW99
Wed Feb 10, 2021 11:15 pm
Forum: The KPG Forum
Topic: Vaccines for Covid 19
Replies: 41
Views: 4900

Re: Vaccines for Covid 19

I had the AZ vaccine yesterday, so far so good, no real problems.

I had to fight my GP surgery to be put into vaccine group 4 (I am 54 but have stage 5 CKD) but I won the battle. I hope no-one else has the same fight :(
by JohnW99
Wed Feb 10, 2021 11:04 pm
Forum: The KPG Forum
Topic: Scared
Replies: 5
Views: 889

Re: Scared

Hi Do you have anyone in the family with the same disease? I have a lot of family members with similar problems and seeing people who are managing on dialysis and people who have had transplants shows me there is still a future. I hope you can find people to talk to, if not we can try to support you...
by JohnW99
Mon Dec 30, 2019 7:16 am
Forum: The KPG Forum
Topic: Hi All I am the New one Here
Replies: 8
Views: 13550

Re: Hi All I am the New one Here

RE Vitamin D My consultant has recommended I start taking Calcitriol which is I believe a form of vitamin D, my GP is reluctant to prescribe it (maybe due to cost?) hopefully this will be resolved in the next week or so. Also my folate is very low, so I am taking tablets for that and having flax see...
by JohnW99
Sat May 11, 2019 10:58 am
Forum: The KPG Forum
Topic: after a kidney transplant
Replies: 6
Views: 16089

Re: after a kidney transplant

Hi my GFR is now 20, I am in the process of going onto the transplant list (Hep B jabs heart scan etc) I am still working although I no longer do hard physical work. What is the average recovery time after the transplant, how soon can I get back to work? I work with a guy who has just come back to w...
by JohnW99
Sat May 11, 2019 10:48 am
Forum: The KPG Forum
Topic: Unidentified Disease
Replies: 13
Views: 37240

Re: Unidentified Disease

Hi Sophie thank you for sharing, I have one daughter, she is late teens and has decided to be tested when she finishes uni, I don’t see a need for ultra early testing but I think it’s good to be tested at an age before symptoms start to show. My kidney function was tested when I was 36 and it was no...
by JohnW99
Mon Jan 21, 2019 7:22 am
Forum: The KPG Forum
Topic: Unidentified Disease
Replies: 13
Views: 37240

Re: Unidentified Disease

Hi Sue Sorry about the delayed reply, I haven’t logged in for a while. I was sent to see a genetics expert at the QE in Birmingham, my DNA was sent to Cambridge where the disease was identified. Looking back on it I have not been able to find any other condition which would result in my family’s sym...
by JohnW99
Fri Nov 02, 2018 10:42 am
Forum: The KPG Forum
Topic: Unidentified Disease
Replies: 13
Views: 37240

Re: Unidentified Disease

Hi the disease has now been identified as ADTKD-UMOD
by JohnW99
Sun Aug 26, 2018 7:55 am
Forum: The KPG Forum
Topic: Unidentified Disease
Replies: 13
Views: 37240

Re: Unidentified Disease

Hi Sue

I have sent you a message.

John
by JohnW99
Sun Aug 26, 2018 7:42 am
Forum: The KPG Forum
Topic: ADTKD-UMOD
Replies: 8
Views: 14348

Re: ADTKD-UMOD

Hi Keith, yes I am speaking to my doctors but want to hear other peoples experiences, thank you for yours. My research shows that gout will not come back unless the transplanted kidney fails and that this condition will not cause harm to a transplanted kidney, so thats all good news :) I know 2 peop...
by JohnW99
Sun Aug 05, 2018 11:49 pm
Forum: The KPG Forum
Topic: ADTKD-UMOD
Replies: 8
Views: 14348

Re: ADTKD-UMOD

Thank you, hopefully he may comment
by JohnW99
Sat Aug 04, 2018 8:42 am
Forum: The KPG Forum
Topic: ADTKD-UMOD
Replies: 8
Views: 14348

Re: ADTKD-UMOD

Fair point Autosomal dominant tubulointerstitial kidney disease caused by UMOD pathogenic variants (ADTKD-UMOD) was previously known as familial juvenile hyperuricemic nephropathy type 1 (FJHN1), medullary cystic kidney disease type 2 (MCKD2), and UMOD-associated kidney disease (or uromodulin-associ...
by JohnW99
Fri Aug 03, 2018 4:31 pm
Forum: The KPG Forum
Topic: ADTKD-UMOD
Replies: 8
Views: 14348

Re: ADTKD-UMOD

Thank you, I hope to find someone who has the condition.
by JohnW99
Fri Aug 03, 2018 2:55 pm
Forum: The KPG Forum
Topic: ADTKD-UMOD
Replies: 8
Views: 14348

ADTKD-UMOD

Hi

Is there anyone here who has this condition or knows anything about it?
by JohnW99
Thu Mar 08, 2018 2:25 am
Forum: The KPG Forum
Topic: Starting PD
Replies: 2
Views: 5357

Re: Starting PD

My Father and my aunt (his sister) both used CAPD in the early 90s, it seemed to suit them better than Haemo Dialysis. They both had a room devoted to the procedure and had a very strict hygiene regime. it seemed to work well.
Good luck, hope it suits you too.