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PKD Charity for Autosomal Dominant PKD

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Hello I’m new to all this. I’m 54 yo man. No known family members have pkd. In August o 2019 I had a Ct scan that showed bi laterial parapelvic cysts and a 4 mm cortal cyst on my right kidney and a 7 mm cortal on my left. I also have hectic cyst scattered in both lobes. Kidney function is nor am gfr 78. I’ve been told I likely have simple cysts or pkd 2. I had follow up cr in May 2020 that showed no change and a renal US in December 2020 that showed no changes. My question is would there or should there be changes in that time frame? And I was told parapelvic cysts are not pkd? Thanks and God bless.

12 Replies

Hello it is unlikely that any visible changes would show up between the two scans as the condition is slow in progressing. I’m no expert just a patient with PKD but to me it sounds very positive that you are mid 50s with still good kidney function and only limited cysts.

birddog923 profile image
birddog923 in reply to 123432

I just get conflicting comments. My kidneys are normal size 11.9 on left 11.5 on right. My urologist says my age 55 and normal kidney size and function and no family history is not pkd. My kidney doctor says likely is pkd2 mutation. Not sure who or what to believe. As I sad I have bilateral parapelvic cysts ( that the urologist says are not considered genetic and should be excluded from consideration) and a 4mm on right and 7 mm on left cortal cysts. I do also have liver cysts. Just confused and frustrated. The urologist said at age 55 if it was pkd I would have hundreds of cysts . Thanks for taking the time to read

Hi. Have you looked at the kidney charity pages online? Or joined the Facebook groups? They are a great place to get info.

I am a PKD patient, at 54 where unlikely AKPKD however remain cool and check ur blood creatinine and monitor monthly basis.

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birddog923 in reply to Wmspl

Thank you for reading my post. I’m just a little rattled . I’m the sole provider to a very special needs child who depends on me for everything in his life. So I’m just trying to get some opinions. Thanks and God bless all

Hi Birddog,

Firstly, calm down. If it is pkd it is in a very mild form that’s why pkd2. It is not likely to kill you any time, or do you much harm. It just needs to be managed properly. Find a nephrologist and they will assist you. Pay special attention to your blood pressure meanwhile. Kind regards, R

Also, I agree that single cysts are normal at your age it’s not necessarily pkd, and yes, probably not.

pedicle, it is called a parapelvic cyst. A parapelvic cyst is a non-genetic cyst with pathological changes; the incidence is about 1%–2% of total renal cysts (2). The mechanism and tissue structure of para-pelvic cyst is almost the same as the simple kidney cyst. Generally, the cause of this disease is either as a result of congenital dysplasia or acquired obstruction in the kidney. The parapelvic cyst is related to urinary tract obstruction. The patient with this condition usually has a medical history of urinary tract obstruction, concretion, or infectious disease. Some researchers consider that this is due to the local expansion of pelvic lymphatic vessels caused by chronic inflammation (3, 4). The greater parapelvic cysts could lead to compression on the renal pelvis, vessels and lymphatic vessels. More seriously, this could lead to severe uronephrosis, renovascular hypertension or kidney failure. The most common clinical features of this disease include pain (98%), urinary tract infection (9.5%) and haematuria [4.8%] (5).

The aim of parapelvic cyst treatment is to have complete drainage of cyst fluid and prevent its further compression on the kidney and collective system. In 1991, Kavoussi et al reported the first successful example of peripelvic cyst treatment by ureteroscope retrograde ostomy (6). However, there are not enough numbers and sufficient follow-up period in published studies. In this paper, a series of experience of parapelvic cyst treatment by internal drainage technology using holmium laser and ureteroscope is reported.

Happy New Year dear one! I hope this information helps and you get the helps you needs. ❤️✌️🏽👆🏽

Happy new year to you and God bless

I just spent a lot of time reading your journal. First God bless you dear. Thank you for taking the time to read my posts. This is all new to me there is no family history of this. I’ve seen 2 kidney doctors. One say possible pkd2 . The other saying not pkd just simple age related cysts and said I don’t need any follow up. Not sure what to believe. Based on my clinical history thst I put on there at age 55 as a patient with knowledge what do you think? Hope you have a good new year dear.....

Just remember to ask your Nephrologist lots of questions and take care of yourself. 💚💚

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