Polycystic Kidney Disease (PKD) Support Group

WELL, WE HAVE TAKEN OUR DAUGHTER TO 3 DIFFERENT SPECIALIST. WE DIDNT CARE FOR ANY OF THEM. THIS LAST ONE SAW HER IN NOV/DEC. HE ORDERED FULL TEST IN JUNE! WE ARE STILL WAITING! DONT LIKE THAT APPROACH. WE WILL WAIT AND LISTEN TO HIS FINDINGS OF THE TESTS. BUT MORE THAN LIKELY WE WILL KEEP LOOKING FOR SOMEONE WE FEEL MORE COMFORTABLE WITH. THIS DR HAS BEEN TREATING PKD PATIENTS FOR 15 YEARS BUT HAD NEVER SEEN/HEARD OF NEW MUTATION WITH NO FAMILY HISTORY! I EVEN KNEW ABOUT THAT!

I don’t even have a choice .There is one nephrologist in my whole state ! Sorry not helpful. I hope you find one you like ,good luck !

I have had no luck either. I usually know more than the doctor does when I see him. I have seen a dozen nephrologists in the last 10 years and none of them knew more about PKD than I did. I saw them once and moved on. I still dont have one. I love my mom's but he is almost 2 hour away.

Hello Dippy, I live in Wayne,WV. I have PKD and am seeing DR. Collins at HIMG, in Huntington. There are 3 nephrologists there. I really like my Dr. Maybe give them a call, good luck and God bless you.

Hello Dippy,
Not sure how far Morgantown Wv, is from Huntington, but I saw a wonderful, Nephrologist/Urologist Dr. Bethany Pelligreno @ Ruby Hosptial, Physican Office Center, Next door to Ruby. She was a wonderful Neph, but she doesnt any longer take my insurance, figures! Its worth the drive, most of the time depending on ur situation you only have to go once or twice a year, so even if it was an hour or 2 drive it would be worth it. Check it out! Hope this helps
Chasity

There is a nephrology group in Columbus, OH that specializes in kidney disease - Riverside Nephrology Associates (check out their website). It would be almost a three hour drive for you but would be worth entrusting your health to someone who knows what they are doing. Heck, many, many years ago, my aunt traveled 3 hours one way three times a week for her dialysis treatments. We do what we need to in order to receive the best care.

None of my nephrologists were experts on PKD when I first met them; they had varying levels of knowledge and in many cases I was the one who taught them much of what they learned. However, they were all well versed in kidney disease and were more than capable of managing my kidney disease from the perspective of checking my kidney function, ensuring my blood pressure was well controlled with the right types of medication, etc.

As time went by and my disease progressed, I became more engaged and as a result, I ensured my doctor became more engaged. Just before I retired from the Air Force I asked for a one-time referral to a PKD specialist at Johns Hopkins (Dr. Terry Watnick) to get the latest and greatest information about PKD and a very thorough write up to take back to my nephrologist. I didn't need the referall the learn more about PKD; I was confident in my knowledge. But I wanted my doctor to learn more...and from an expert, not just from me. It took some persistence, but he finally agreed. She wrote an incredible report, at least 5 pages long. About 2 pages were about me, my disease, current progression and recommendation for screenings (e.g. MRI/MRA of the brain every 3-5 years due to family history). The other 3 pages were about PKD as a disease, the latest in clinical trials and overall clinical care of PKD patients from diagnosis to ESRD and transplant. The report was incredibly enlightening for my nephrologist; he read many of the same things from an expert that I had been telling him and his fellows, residents and medical students for a couple of years. It not only enhanced our relationship, but confirmed in his mind that I really knew what I was talking about.

We as patients need realize that we need to be willing to educate our doctors. I know that in an ideal world we shouldn't have to do this, but this is by no means the ideal world and if we want the best possible care, we're going to research out own disease, learn what we can and then talk about it with our doctors and if they dont' know about it, then we teach them. A good doctor is willing to learn, regardless of the source. I often shown up for an appointment with a journal article in my hands because there is something I want to talk about, be it pain management, cyst sclerosing or just the latest on PKD research (for him to review at his leisure...which will be faster than waiting for him to read it in a journal).

Doctors simply don't learn much about PKD even in their fellowship programs. Genetic, cystic, no treatment, no cure. That's about it. And since it doesn't matter if we have a long family histories or are mutants, develop symptoms in our 20s or 60s, the treatment of the symptoms is the same, so there is little need for them to learn more.

It's unrealistic to expect every nephrologist to know everything about PKD or any other kidney disease for that matter. They deal with every kidney disease out there and it's patently unrealistic to expect them to keep up with all the latest research and information on every single disease whereas we are focused on a single disease and have the time and inclination to seek out information on that disease and that one alone. So instead of jumping from doctor to doctor expecting them to be experts on PKD, try sitting down with your current nephrologist and talking about PKD, what they know, what you know and how to reconcile the differences to ensure you're getting the best possible treatment. You want a doctor who is going to look out for your best interest and be your advocate. That doesn't necessarily have to be a PKD specialist, just a nephrologist is knowledgable, listens TO you, talks WITH you, discusses treatment options with you, and knows their limitations and who to call if they have any questions. If you can build up a good relationship with your doctor and maintain that relationship over time; it's well worth the effort! Continuity of care with a good doctor is worth it's weight in gold!

Okay, I've rambled on long enough. Please, take some time and before you go doctor hopping again, try having a conversation with your current neph; you may be pleasantly surprised to find out that your doctor is receptive to information and has a reason for not testing you every month, quarter, semiannually, etc.

Hi Helen, What a great, informative letter you wrote to us all! I for one will take you up on all of your advise. I so agree with you about expecting our doc's to know all there is about every single kidney disease there is. It's unrealistic to say the very least. I'll tell you guys something that you probably won't believe, but it's true! When we lived in Richmond,VA the kidney doc that I saw asked "me" a question. I hope you are sitting down. He asked me if it was true that transplanted kidneys would become cystic after being put into the PKD patients body!! This was one year ago! I swear to God, thats what he asked me. I looked at him as if he was a moron and set him straight. Sigh.. He had no clue, or hadn't taken the time to find out! Now I live in a small city in upstate NY, which is just about as behind the times as any place could be. I too have had to more or less educate my kidney doc about PKD, he is really young, just starting out his practice and is practicing on me! Good thing I'am an old broad with a tolerance that doesn't quit. For the money we pay these guys, we should be getting expert care, but we're not, sad to say. The kidneys are the most complicated organ in the body, the heart is a piece of cake. Now if we lived in a perfect world, this wouldn't be happening, but it is. The biggest issue I have with this guy is the amount of time he is willing to spend with me. MAX 20 minutes and thats a lot. Most docs don't spend 10mins. with you. I've figured out that I've lost them completely if I don't get their attention in the first minute or two of our conversations. Therefore, I write everything down that I want to say and need to say to him/her. As you have drilled into our heads so many times about taking a notebook with all our notes and important issues we have. The biggest problem in today's world with insurance doing whatever it's going to do, is to get a doctor's attention and to do it fast!! Practice with someone before you go to your doctor's apt. It's the more cruical thing anyone could do to help themselves. Once you've gotten their attention, they are more willing to listen to you. Thanks again Helen for all your great adivse. I'am listening to every word you say!

Norma...

hi Norma, that was Ruth who answered you but I agree, we sometimes have to teach our doctors too.
I had a wonderful Nephrologist when I lived in the Bronx, he treated everyone as if they were special, from the ones who cleaned the dialysis unit to the department heads in the hospital, but the best was reserved for his patients. I course I never noticed that he looked like a doctor in a soap opera.
this wonderful man did not know a whole lot about PKD and found it hard to believe that I continued to produce urine normally, therefore did not need fluid removal - but the numbers proved it. my "dry" weight remained the same or nearly so and when it was higher I would pee more after dialysis as the excess sodium was removed.
I must contact him to wish him happy holidays. I continue to count him among my favorite people, even tho he didn't know everything (as so many doctors think they do).

I've been seeing my neph for over 10 years. He was a baby faced kid right out of med school when we started. He has always been willing to listen. He asks me lots of questions. He reads up on what's new with PKD before we meet. Most of all he treats me with such kindess, warmth and respect. He is not a PKD specialist...his expertise is in diabetes.

A shout out to you, Dr. Marvin Sinsakul!