Polycystic kidney disease (PKD) and future planning

@charliedelta. Good Morning, and Welcome to Mayo Connect. I would like to assure you that you are not alone with your diagnosis of PKD. And I believe that your desire to investigate and plan for your future are going to be to your advantage.
My own experience with liver/kidney failure - liver/kidney transplant tells me that being proactive, and taking care of oneself along with good medical care are the best way to proceed.
Here is what Mayo Clinic has to say about kidney disease (PKD).
https://www.mayoclinic.org/diseases-conditions/polycystic-kidney-disease/symptoms-causes/syc-20352820
I want to invite you to the Transplant Discussion Group where you will meet @jolinda who has shared her own PKD journey. You can read about what others are sharing, and I encourage you to participate with your own questions and comments. That is how Connect works - by sharing we are able to help others and to support each other. https://connect.mayoclinic.org/discussion/pkd-kidneys-removed-at-time-of-transplant/

I look forward to meeting you there.
Is there anything else that I can help you with? Let me know.

Hi CharlieDelta,

I am so sorry that you have this disease! Because it is an inherited disease many of us have watched people we love go through kidney failure in our lives and it can feel like a scary and lonely process at times. I want you to know you are not alone, many of us have traveled the road ahead of you and are here to help if we can.

I inherited PKD from my mother's side of the family and I can tell you options have come a long way in just one generation. You are so smart to learn all you can about caring for yourself including as you mentioned in your post watching salt and protein. Keeping blood pressure in check really eases the burden on your kidneys. In addition to closely watching what I ate in the years leading up to transplant I would also remind my doctors of my condition when they were prescribing any meds because I learned some drugs are processed through the liver instead of the kidneys and they can generally substitute one for another. Staying hydrated was also a big help for me.

Even though I was good to myself eventually the PKD caught up and I received a transplant from a living donor. Because my kidneys grew so large from the PKD they were removed at the same time that I received my transplant. Post transplant I actually needed to increase the salt in my diet. 🙂

If I can help answer any questions or ease your journey let me know.

Jolinda

My most recent mri stated the kidneys are nearly replaced by numerous cysts and complex cystic masses, compatible with polycystic kidney disease, anybody know if the kidneys can be saved.

Hi @triff1, welcome to Mayo Clinic Connect. Triff, have you been diagnosed with PKD or are you waiting to consult with your doctor with the MRI results?

HI @triff1
I'm sorry to hear about your diagnosis. There are many ways which you can keep your PKD kidneys healthy longer (depending on their condition) but unfortunately there is no known cure for PKD.

* Keeping your blood pressure under control is essential to slow the damage to your kidneys
* Often Lisinopril is prescribed for high blood pressure because it helps protect the kidneys to some extent
* It is important to consult a dietitian to modify your diet and water intake appropriately
* Daily exercise and maintaining healthy BMI also helps a great deal
* Jynarque is a medicine that is a medication that is also used for treatment of PKD
* Actively avoiding mental and emotional stress is also important

I hope this list gets you started in the right direction. A Nephrologist (kidney doctor) will be able to give you details on your exact condition.

Do you have other family members with PKD? Was your diagnosis a surprise or did you expect you had it? Please know our online community is here to help and encourage you whenever you need us.

Jolinda

I am an 84 year old male with pkd creatinine ranges around the 200 mark. Recently my potassium hovers around th 5/6 level . I am feeling incredible weakness and feeling frail. Is that likely caused by my 25% kidney functioning ? How concerned should I be about my potassium levels?

Hi, jdiakiw @jdiakiw, as an 85-year-old CKD patient, diagnosed as "moderate" kidney disfunction, I have some experience with your issues of concern, but I'll readily say I'm not qualified to offer any diagnoses. What can you tell us about your Creatinine level? My lab reports it in mg/dL, and the normal range is 0.7-1.2. Mine runs a little high at 1.45 mg/dL. Does your figure of 200 mean you're measuring the solid Creatinine in mL (milliliters), which might be the equivalent of 2.0 in my lab's system? Would that be quite high? What does your doctor say about that? Your potassium in the 5-6 level compares with mine in the 4-5 level. Potassium is a primary interest, since I have a genetic kidney problem that excretes potassium and refuses to reclaim it. It surprised me a few years ago and sent me to the emergency room with hypokalemia. As long as mine stays below 6.0 I know I can regulate it nutritionally. Your kidney function of 25 percent filtration rate (GFR) compares with my 42 percent, which doesn't cause me conscious concern right now, but I know I have to keep an eye on that level. This comparison of your situation with mine dramatizes the importance of a ready line of communication with a medical team that knows in detail what I'm dealing with. Are you able to get that kind of service from your nephrologist and endocrinologist? Martin

I feel quite confident of my team. Dr Pei is a leading researcher, professor, head of nephrology at the hospital network. In Toronto he specializes in PKD2 my inherited condition. I have been taking ‘tolvaptran’ for 2 years now. It costs 30,000 $ per year but he was able to get it free for me. Ihave also had 2 interventions where they drilled down into my kidneys into the larger cysts 5-6 in in diameter drained the fluid and reinserted a concoction to kill the lining of the cysts What are the major dietary changes you have made to keep potassium low? Normal reading in our reporting is up to 120. Dislysis is necessary when it reaches around 300.

Well, @jdiakiw, you do indeed exhibit a rousingly professional medical team. Congratulations on putting that together. I don't have a polycystic condition thankfully, but I had a marble-sized cyst on my chest that ruptured a few months ago. We bathed it daily and kept it protected from bacteria, but did nothing else except tweezer out pieces of the lining when I could see them. To keep my potassium levels up, I drink a cup of pure coconut water for breakfast every day and add a little later if I need additional potassium. Against that background, I simply reduce my daily coconut water in order to bring the potassium reading down. That's not much help for you, I realize, so I'll add that I tracked down a good list of potassium rich foods on the Internet and prepared myself to avoid the most fearsome of them, but it was not necessary in my case, so I lost the list and didn't worry about it. Let me know if you want me to try to track it down and pass it along. Martin

Thanks. I’m ok with the list. D pei arranged for me to he phone yesterday with his nursing in his Dept. We talked over an hour and then she sent me additional materials and links