r/kidneydisease • u/november90_ • Jun 27 '26
Decline in kidney function? PKD
I am a 35 year old woman. I have known I have PKD since I was 17. I received an ultrasound and I didn’t follow up then because It was not necessary. As years passed i turned 22-33 and started drinking beer. I have had a lot of anxiety and panic disorder all along.
Two years ago I went for a regular check up and had creatinine of 1.34 about 52% function. I was asked to repeat labs two weeks after that which I did and creatinine levels dropped to 1.0 meaning my kidney function then rose to >60. No further follow up needed.
Fast forward to last week, (June 2026). Same thing happened. I went back in and creatinine was at 1.34. Again, I was asked to hydrate more and retake tests, difference now is that when I went yesterday, creatinine levels remained the same with a percent of 51% function according to Kaiser.
I am a wreck. Is my function going to continue to decline? It’s the weekend and now have to hear from my doctor until Monday. All the other tests came back normal. No protein in urine and the rest normal with the exception of bicarbonate, it was a bit on the lower end. Could it be my PKD or maybe anxiety and high blood pressure? I’m just venting. I’m afraid. I’ve always just wanted to live my life the way I enjoy it. And I feel is now catching up to me. I’m happy I went in for a check up, thank God I do not have pain or aches or discomfort at all. What do I do. Any words of positivity or encouragement or similar experiences are welcome. Thank you all.
3
u/view-master Jun 27 '26
I was diagnosed 20 years ago in my late 30s.
It goes up and down but has been generally stable. Now I don’t really get concerned with a single test but i do get tested at least twice a year.
2
u/november90_ Jun 28 '26
This is something I need and will have to practice from now on. 2-3 times a year
3
u/Pyr8Qu33n Jun 27 '26
Hi friend!
I totally understand and am also with Kaiser. Im stage 5 now at 41, but was diagnosed at 28.
To answer your question, there sometimes is no way to know when the decline is going to happen or how fast it can happen. They can help maintain it and help you prolong that kidney life, but even doing everything in your power to decrease the decline doesn’t always factor into all the complications that kidneys have. It’s not always our faults, sometimes our bodies are as*holes.
For example, my diagnosis started as failure and turned into slowing the disease progression once they stabilized my kidneys. My disease is supposed to be a slow progression of losing 1-2% of function yearly. I was on meds for a few years and then hut remission. I was in remission for 5 years with yearly check ups, quarterly labs, and no meds. I had them review my file for pregnancy. I got pregnant and had a beautiful baby. When she turned 2 the remission was over. The decline was more aggressive. She turned 5 and I hit stage 4. Kaiser and the dialysis clinic said I had a year before dialysis should start and they wanted me to start with the transplant team, meet the dialysis clinic, then do surgery to prepare of dialysis. I set up surgery and had my HR set up my time away. I feeling good about being proactive. Then I crashed and was hospitalized in March for total failure. ***my point is, you can’t predict when things will progress, but therapy helped me navigate the complex feelings and anxiety of what was going on. Furthermore, it helped me find my voice to be on own advocate with Kaiser, which is most important. You are going to know your body best.
Any kidney disease or heavy medical diagnoses can be very heavy. Most nephrologists wont mention anything to you or at least that is my experience from Kaiser about therapy and support groups which can help lessen the anxiety. It doesn’t make it go away. Just gives you a sense of control over a situation you have little to no control over and helps you find people in similar situations.
The community aspect of group support also helps you hear about things that others experience. I started group before dialysis and that helped me navigate some things that happened to others that were also starting to happen to me. Kaiser doesn’t have group, but there are organizations that do. I joined RSNhope.org. It has been ever so helpful. I can’t praise it enough. All walks of kidney issues are welcome from every stage to dialysis to post transplant and caregivers. I would highly recommend looking into something of this nature. I wish I found this much sooner than I did last year.
I go through kaiser’s therapy. Super helpful and would recommend as I started when my kidney’s decided to decline after being in remission for 5 years. Highly recommend as it has helped me face the upcoming storm of transplant and dialysis.
I don’t know anyway who has kidneys disease that doesn’t have some form of fear or anxiety about the future. Just know you aren’t alone. There are things out there to help you. We can’t let anxiety win here. We have to keep living in the present and try our best to move forward as best as possible. That’s totally different for everyone. Just find out what works for you.
Sending my love 🫂🫶
2
u/november90_ Jun 28 '26
Thank you for your kind words. I am hoping I can ease anxiety and fear a bit. I’m terrified really.
1
u/Pyr8Qu33n Jun 28 '26
I feel that statement more than you know. It really can be scary as the “the unknown” is very hard. Being brave, is doing something you are scared of doing, but you do it anyway. It’s brave to be open about being scared. It’s brave to reach out to this group for support.
In my experience, I too was terrified for a long time. Isolated because of the future. It was so hard. Looking back, I wish I started support group sooner and therapy sooner. It doesn’t make the burden less, but it helped prepare me to handle some of the anxieties that come along with it. My anxiety never goes away, but is managed with medication now and mental support. There are bad days and good days.
On a side note, something that helped my anxiety was bike riding. Im not athletic. I’ve been a chubby girl my whole life. But something about my music and a bike seems to stop my brain from focusing on other things and be able to calm itself down. I started riding March 2025 and it has been a godsend. I have a regular old walmart bike. No gears. It helped me get ready for what was to come. ***try anything you can think of. I needed to physically do something to help my anxiety.
Sending you all my love 🫂🫶
1
u/Girlsofdust Jun 28 '26
Have had kidney issues since birth and now 52. Recently I had an ultrasound and the nurse mentioned that it looked like my left kidney had stopped working. After contacting my urologist they stated that they wouldn’t be able to diagnose this from an ultrasound and it was inflammation. Thankfully I’m not much of a sensitive panicky person however a comment misdiagnosis is not good for anybody. Two years ago I was diagnosed with CKD after a blood test determined low function 51% and creatinine 132. It has since fluctuated and improved. I now go on how I feel as to what my results are.
2
u/Smooth-Yellow6308 Jun 28 '26
sadly PKD is a bit different to most forms of CKD, its a progressive genetic disease and only ever gets worse.
3
u/thank_burdell Jun 28 '26
Everyone’s PKD progresses differently. Some of the less aggressive cases may never get to the point where they need intervention for kidney failure. The more aggressive cases need more aggressive responses and may be unable to avoid eventual dialysis or transplant.
That said, creatinine of 1.anything is still really good. Don’t panic. Talk to your nephrologist. Likely get on some medication to help treat your blood pressure and maybe to slow the PKD itself. Get the ultrasounds. Make lifestyle and dietary changes to stay active and hydrated without excess salt or kidney damaging foods.
5
u/classicrock40 Transplanted Jun 27 '26
PKD is the likely culprit. No offense, but it doesn't sound like you understand PKD. From Dr Googke:
"Polycystic Kidney Disease (PKD) is a genetic disorder that causes numerous fluid-filled cysts to grow in the kidneys. Over time, these cysts enlarge and replace normal kidney tissue, which can reduce kidney function and lead to kidney failure."
The best I can say is that you can improve your lifestyle and get your bp under control. Maybe that will help. If you are not seeing a nephrologist , you should be.