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
Search found 23 matches
- Wed Feb 10, 2021 11:19 pm
- Forum: The KPG Forum
- Topic: Stage 3 no protein in urine
- Replies: 5
- Views: 6513
- Wed Feb 10, 2021 11:15 pm
- Forum: The KPG Forum
- Topic: Vaccines for Covid 19
- Replies: 69
- Views: 129876
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
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
- Wed Feb 10, 2021 11:04 pm
- Forum: The KPG Forum
- Topic: Scared
- Replies: 5
- Views: 6894
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...
- Mon Dec 30, 2019 7:16 am
- Forum: The KPG Forum
- Topic: Hi All I am the New one Here
- Replies: 12
- Views: 30963
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...
- Sat May 11, 2019 10:58 am
- Forum: The KPG Forum
- Topic: after a kidney transplant
- Replies: 6
- Views: 20692
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...
- Sat May 11, 2019 10:48 am
- Forum: The KPG Forum
- Topic: Unidentified Disease
- Replies: 13
- Views: 48601
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...
- Mon Jan 21, 2019 7:22 am
- Forum: The KPG Forum
- Topic: Unidentified Disease
- Replies: 13
- Views: 48601
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...
- Fri Nov 02, 2018 10:42 am
- Forum: The KPG Forum
- Topic: Unidentified Disease
- Replies: 13
- Views: 48601
Re: Unidentified Disease
Hi the disease has now been identified as ADTKD-UMOD
- Sun Aug 26, 2018 7:55 am
- Forum: The KPG Forum
- Topic: Unidentified Disease
- Replies: 13
- Views: 48601
Re: Unidentified Disease
Hi Sue
I have sent you a message.
John
I have sent you a message.
John
- Sun Aug 26, 2018 7:42 am
- Forum: The KPG Forum
- Topic: ADTKD-UMOD
- Replies: 8
- Views: 19807
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...
- Sun Aug 05, 2018 11:49 pm
- Forum: The KPG Forum
- Topic: ADTKD-UMOD
- Replies: 8
- Views: 19807
Re: ADTKD-UMOD
Thank you, hopefully he may comment
- Sat Aug 04, 2018 8:42 am
- Forum: The KPG Forum
- Topic: ADTKD-UMOD
- Replies: 8
- Views: 19807
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...
- Fri Aug 03, 2018 4:31 pm
- Forum: The KPG Forum
- Topic: ADTKD-UMOD
- Replies: 8
- Views: 19807
Re: ADTKD-UMOD
Thank you, I hope to find someone who has the condition.
- Fri Aug 03, 2018 2:55 pm
- Forum: The KPG Forum
- Topic: ADTKD-UMOD
- Replies: 8
- Views: 19807
ADTKD-UMOD
Hi
Is there anyone here who has this condition or knows anything about it?
Is there anyone here who has this condition or knows anything about it?
- Thu Mar 08, 2018 2:25 am
- Forum: The KPG Forum
- Topic: Starting PD
- Replies: 2
- Views: 8249
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.
Good luck, hope it suits you too.