hello i was diagnozed with pkd inherited from my mum at 23 years old. At that point i had no symptoms whatsoever, blood pressure was excellent and gfr was at 100%.
Fast forward today i am 39 years old, take daily blood pressure medications and my gfr is at 69%. i have been seeing nephrologist regularly for about 3 years, today for the first time i told him the problems i have been getting, like chronic back pain, kidney pain, i am also 4 foot 10 in height and weigh 7 stones. i was trying to explain how it affects me but he rushed me and totally ignored my back pain which upsets me a lot. i felt totally rushed and ignored when i mentioned about my back pain and how i try not to take painkillers daily.
he also said he will send me for ultrasound scan and that he will see me in a years time, so i feel that he is not interested in my pain.
i also could not talk to him that this past year my belly looks extremley swollen and i find it embarrassing as i look pregnant. my mum has pkd also, she is 64 and had a transplant at 50.
im sorry for the long post as i wanted to tell my nephrologist more about my pain and how it affects me but he kept talking over me and didnt seem that interested.
i like to know if anyone sees there nephrologist and feel they can say anything and feel listened to.
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marie763
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This is unfortunate. I hope you find a neph that supports you and doesn’t treat you like a number. I’m nervous to meet my neph for the first time but we have to be advocates for ourselves! We cannot rely on them!
Is it possible to change nephrologists? Or do you have a primary cste doctor who can see you and interven What you're said about your treatment is disturbing.
Yes. I do have a nephrologist now who listens to what I say and who hss been very helpful. However. my first nephrologist never listened and would try to hush me up. And, in so doing he didn't hear me when I told him the new medication he prescribed was causing terrible side effects that forced an emergency room visit. I knew that I had to chsnge doctors and was so lucky to find the one I have now.
As others have said you have to advocate for yourself. It's likely that the current doctor looks at your current GFR and think shes fine when you're not. I continue to be amazed on how CKD treatment doesn't usually start until you're in stage 3 or 4. It seems to be such an entrenched old habit for this disorder. Whatever happened to the notion about "early detection" for kidney problems. Instead, it seems to be "the later the better" for CKD.
Hoping and praying you can find the medical help that you need for that pain. Dont stop asking for and seeking the help you need. Please keep us posted as we hear you and we all care. Best....
Sorry your doctor made you feel rush and didn’t take the time,I have learn in my maturer age to speak up and I have even said like at some new doctor I am not finish or I don’t feel I have an answer to my question . I have been blessed with my neurologist and been seeing there Group for so long I know a lot don’t see you until stage four but me being proactive I think is how I stay in stage threee so long before I hit stage four .Yes be careful with pain pills and be careful with ibuprofen take Tylenol instead I think it may be call somethin else in Europe . But Tylenol goes through the liver ibuprofen go goes through kidney . With my back pain I find a heating pad help that .I hope you find the right type of care .
Marie, I also have PKD, stage 5, near the point of dialysis. What you are saying totally reflects my experience over the last 10 years with my kidney doc. I see a limited amount of information on here specific to PKD, but there's a little. I also am to a point where I may look for another kidney doc (neph) as I approach dialysis, since mine is more interested in hearing himself spout medical gibberish than to listen to what I'm feeling and respond. A couple months ago, I had a cyst to burst. I thought I was having a baby or something! Dang it hurt. I saw my neph a few days later and he pretty much acted as if it were no big deal. Happens all the time with PKD folks. Well it doesn't for me! I wanted to know what to do about it. He pretty much gave me nothing. So I went to my regular doc and he prescribed some pain med in case it happened again, cause Tylenol didn't do much of anything for that pain. Now fortunately, as in childbirth, the pain only lasted about 8 hours and then it greatly diminished and afterward I had a lot of blood in my urine for three days. But ever since, I've had pain in my right kidney. Not enough to use that strong pain killer, but enough to be very uncomfortable at times, especially if I lift something or sometimes just going from a seated position to standing. And I can't lay on my right side at night, it's just to uncomfortable. I feel like I have a soccer ball (your football) inside of me.
So I totally understand how you feel, and as I go through this process I'm going to try to find better solutions than my current kidney doc is offering. I'll share with you as I find out more.
Send me a reply so I'll have a link in my email to this thread to be able to respond back to you easily as I discover more info.
Marie, look into this facebook group as another source of information/support and just see that there are many others who share your issues: Search facebook for: Living with Polycystic Kidney Disease support group and join that group,
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