Recommendation for PKD doctor

I get my CKD care at Mayo Phoenix/Scottsdale. Honestly, I had to look up PKD because I was unaware of the term. Many years ago,I had a cancerous cyst dissolved from my right kidney through cryoabation by an interventional radiologist. I love going to Mayo as I have so many docs there, and they are the best for me and my wife. However, I might start looking for a hospital that offers PKD clinical trials. These may be the best suited for you.

Unfortunately, nephrologists are in great demand at Mayo as most nephrologists spend a considerable amount of time with late stage kidney disease and ESRD. Waiting to schedule an appointment can be lengthy. As a member patient, I talk to the nephrology dept. many times so maybe they can assist you. For me, I may be more likely to seek a specialized radiologist who works exclusively with PKD patients. Secondarily, clinical trials by nephrologists and others may offer a faster return. Perhaps, even a Zoom appointment may prove a great direction. Whatever the case, I wish you the best in your search.

I add my welcome @kyokunn33, I'm also inviting fellow kidney patients and PKD-ers like @jolinda @rosemarya @kayb @stephanierp @blbird33 @bobinnevada @somedaydialysisfree to this discussion.

You can read some of their experiences in these related discussions:
- Polycystic kidney disease (PKD) and future planning https://connect.mayoclinic.org/discussion/pkd/
- PKD kidneys removed at time of transplant https://connect.mayoclinic.org/discussion/pkd-kidneys-removed-at-time-of-transplant/

The Mayo Clinic advantage is that Mayo Clinic kidney specialists (nephrologists) and other doctors experienced in diagnosing and treating polycystic kidney disease — such as hypertension specialists, geneticists, neurologists, surgeons and radiologists — work together to develop a treatment plan that meets your needs. Mayo doctors also collaborate with research scientists to find new approaches. Regardless of the specialists assigned to you, you have the benefit of a highly specialized team. I know this sounds like marketing speak, but it really is the Mayo way. I'll let others share their experiences.

Hello Kyokunn33,
Have you checked out pkdcure.org? This website is run by the PKD Foundation and is devoted to providing valuable help to people with PKD. It has tremendous resources, including one to help you find a doctor, who specializes in PKD. The good news is that Mayo Clinic received their Center of Excellence rating. So you are at the right place at Mayo. Here is their write up on Mayo, as well as the ADPKD clinic director's name, Neera Dahl, MD. I would start by contacting her office for information and recommendations.

The Mayo Clinic Pirnie Translational Polycystic Kidney Disease Center is a collaborative and multidisciplinary center that includes PKD investigators working alongside Mayo Clinic clinicians and scientists with expertise in adult and pediatric nephrology, urology, hepatology, liver surgery, cardiovascular and neurovascular diseases, pain medicine, diagnostic and interventional radiology, kidney and liver transplantation, dialysis, physiology, molecular biology, genetics and reproductive medicine. This team approach means that promising therapies move more quickly from the lab through clinical trials and into clinical practice to benefit patients with PKD and related disorders, conditions that can have devastating and lifethreatening complications. The Mayo Clinic Pirnie Translational Polycystic Kidney Disease Center offers a broad variety of services including innovative therapies and opportunities to enroll in clinical trials.

200 1st St SW, Rochester, MN 55905, USA
507.538.3270

ADPKD Clinic Director -
Neera Dahl, MD

I live in Washington state so I don’t regularly see a doctor at Mayo Clinic for PKD. We chose to travel to Mayo Clinic in Phoenix for my transplant because they offered a MUCH less invasive surgery with simultaneous double nephrectomy, which would have an easier recovery than my local hospitals. I will tell you that absolutely every single doctor I saw for my transplant was TOP NOTCH!! I had never had such amazing care! Honestly, we were blown away by everyone at Mayo Clinic. Most importantly, they took amazing care of my donor/sister too!!

The advantage of going to Mayo Clinic is that they have a team of doctors that they put together for your needs!

I ended up not being able to have both kidneys removed at the time of my transplant because when they were doing surgery, they discovered that my native kidneys had had so many cysts burst that they had become adhered to surrounding organs, which took more time to remove than expected. My sister was on the table and they needed to get her kidney transplanted to me so they decided they would need to remove the other kidney another time. I trust that they did what was best for both of us. I returned 2 years later (it took so long because of COVID) to have my left kidney removed and it just so happened I also needed a hysterectomy because my whole body went haywire when my kidneys failed. The transplant team was able to work with the gynecology team and complete both procedures at the same time!! (Might as well be put under and have pain only one time 😅😂😂)

We decided to switch to our local hospital in Seattle after my 3 year post transplant appointments last year because of travel expenses but I wound not rule out Mayo Clinic if I ever need another surgery or another transplant because the doctors were extremely knowledgeable and so caring; they gained my trust!

I hope this helps a little bit! I wish you well on your own journey with this awful disease 💚💚💚

Hi there @kyokunn33
I know in Rochester at Mayo there are many. If your interested in having them removed because they are causing you issues. Dr. Prieto is a surgeon who removes them laparoscopic-ly. He has removed mamy suseccfully.

Thank you all for the replies. I have checked out PKD foundation and its sites already. Read everything on Mayos website on pkd.

Also I searched for pkd doctors at Mayo. It seems Dr. Fouad T. Chebib at Mayo Jacksonville is the only specialist who works with novel treatments for pkd and its complications. The other doctors who listed pkd as their interests don’t seem to have that much research work on pkd. Don’t know if the best doctor for pkd is Dr. Chebib or all the nephrologists at every Mayo site share the same information on special treatments. Aspiration and sclerotherapy, Jinrac, kidney transplant are the most common treatments. Maybe there’s genetic therapy trial? Or some other special therapy?

@kyokunn33, novel therapies for PKD and its potential complications are researched at Mayo Clinic. You're right that Dr. Chebib is a leader in this area and works with his fellow nephrologists at all Mayo Clinic sites.

If you're interested in learning about active research and potential trials to join at Mayo Clinic, you can contact the Mayo Clinical Trials office. You can conduct your own search here:
Clinical Trials https://www.mayo.edu/research/clinical-trials

Of call them at:
Phone: 800-664-4542 (toll-free)
Contact form: https://www.mayo.edu/research/forms/clinical-trials

Kyokunn, may I ask what treatments you've had? What complications are you currently dealing with?

Thank you for the clinical trial information. I am taking Diovan and ZaniDIP for hypertension. Took Tovalptan last year and stopped after more than 20% of blood creatine increases. Also had to pee 6-7 times during sleep. The quality of sleep affected blood pressure. In March I had a laparoscopy to treat a large kidney cyst that ruptured and caused inflammation. The pain started in January, and its severity fluctuated. Sometimes no pain, sometimes a little stiffness at the abdomen, sometimes very severe pain that could only be soothed by morphine. It was only when the doctor performed the laparoscopy that they found out about the inflammation. CT scans only revealed that the cysts had ruptured before. There are other large cysts in the kidney and liver. Not sure how to prevent those large cysts causing complications like inflammation.