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Hello!
I was diagnosed in 2017 with ADPKD. This diagnosis is in my health records and I've been seeing a local nephrologist since then. When my GFR dropped to 26 from 60 (ten yrs. ago) I was able to get an appointment at Mayo. My ADPKD specialist, Dr. Dahl, did not think I had this disease and we did a genetic test. It came back negative.
In 2017, I searched for information about ADPKD and found it troubling. My kidneys were going to get big (possibly 20 lbs.), filled with cysts and I would experience pain. I would more than likely be on dialysis by the time I'm 70 or need a transplant. My kidneys are failing, but not due to this disease. I have a future appointment with Dr. Dahl to discuss my options. My point is, to seek 2 opinions if your diagnosis is troubling or a concern. I may have been able to stabilize my disease better had I known I did not have ADPKD. I don't know, regardless, the diagnosis is on my health records. We have the genetic test to prove this is not the case. If you're in doubt, request a genetic test. Or get a second opinion from a specialist. You are your best health advocate. My advice is, Educate yourself and ask questions. The volunteer moderators here are excellent and have helped me along this journey.
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@mrainne Your post underlines what is an important thing to consider at any time. Afterall, we have all heard/read the same story time and again, where what one professional says is not really the true situation.
Has it been determined what the cause of your kidney issues, is? I will be very curious to hear!
Ginger
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5 ReactionsIt looks as though the nephrogenic diabetes insipidus or variation is the issue. Desmopressin, which as I understand it, is lacking which makes it hard for me to be hydrated. This is from long-term lithium use. Again, this is as I understand it right now. I will have a Zoom appt. with Dr. Dahl at the end of August. So, my question is, if my local nephrologist prescribed desmopressin or NSAIDS to keep my kidneys hydrated, would this have made a difference in stabilizing my kidney function? My local neph said never to take NSAIDS! Confusing.
I'm so grateful for Dr. Dahl's expertise in this area. Possibly consulting other Mayo nephrologists because NDI is rare but I saw a statistic that 55% of people on lithium get it. I consider myself lucky because I was on lithium for over 35 years before this became an issue. My GFR and creatinine were in the normal range all those years! I'll report back after my appointment.
Hugs to all and many thanks for this discussion!
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2 ReactionsThe second opinions at Mayo are second to none.
When I saw several local doctors, they either didn't know the cause of decreased my kidney and bladder function, got it wrong, or were marketing themselves. I saw Dr, Steve Erickson at Mayo and he accurately diagnosed CKD caused by hypertension, I have seen him ever since and will continue to do so. Simultaneously, I saw Dr. Dave Patterson for my bladder related issues. He has performed several successful procedures and I continue to see him. These two men have worked together in medical harmony on my behalf ever since.
I have experienced similar positive experiences with orthopedic and surgical issues at Mayo. If it's serious enough, I'll take the trip to Rochester to ensure that what ought to be done will be done.
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3 ReactionsThank for that! I had a an appointment last June when the genetic test was done. Also, enrolled in a research study. I’m happy to drive to Rochester again if need be. And if I do need a transplant in the future, that’s where I want to go. The Mayo Neph dept. said I could keep Dr Dahl as my Dr for the future. She can order tests locally and they’ll be electronically sent to her. She is a ADPKD expert or specialist. She may refer me to a different Dr since I don’t have ADPKD.
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3 Reactions@mrainne It's simply awesome that you are getting this expertise into your health journey! I know long term use of certain medications can cause kidney issues, and lithium falls onto that list. Sometimes an infection or illness can trigger a staggering decline in eGFR, and several members here will attest to that, even when there are other risk factors at play that haven't asserted themselves.
Ginger
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1 ReactionI so agree… this is the one area of my life where I am assertive. I’m a big Mayo fan, but even there it helps to educate yourself. In Rochester, they have a room where patients can access computers to search for information.