Category Archives: Polycystic Kidney Disease

How common is complete energy depletion in patients on dialysis? My fiance had both Polycystic kidneys removed Jan 2017. He’s been on dialysis 5 years. About 2 years ago, he started suffering from devastating energy loss. He was very active prior to kidney failure, and even for first two years. We remodeled a house and he was up and working every day. In Jan 2014, he was diagnosed with Bilateral Vestibulopathy, from an allergic reaction to Gentimycin. Since then, his equilibrium is very poor. He stumbles frequently; to the point that many people think he is drunk. His nephrologist has him on prednisone right now, which just makes him sweaty. His energy level is still low. He stays in bed until about 11 -12. He gets up, takes shower, then has to take a nap. He has lunch, then sits in couch, with computer. We cook dinner around 8pm at night. He has to sit to chop things. His only activities are literally showering, going online, food prep, and if he’s lucky, he can go grocery shopping – as long as he can use a cart to keep himself upright. (He won’t use carts for handicapped). He’s 52. I am starting to think that he may be in a depression, in addition to his medical issues. We have no physical activity between us, either. It’s very sad for me to watch him disappear.

I agree with you that this is very unusual.  I would suggest that your fiancé have further evaluation and testing.  Depression is very common in dialysis patients and in patients with chronic medical illness.  Your fiancé should ask his nephrologist … Continue reading

Posted in Ask the Doctor, Kidney Failure, Kidney-Related Health Questions, Laboratory Testing, Medication and Kidney Disease, Medication and Kidney Function, Polycystic Kidney Disease, Sexual health, Symptoms and Side Effects, Treatments

Need to know what kind of diet my son should be on after having both kidneys removed last week. they got so large from the polycystic kidney disease he couldn’t hardly breathe cause they were squishing his lungs an cutting of his oxygen, should he be on a special diet since he doesn’t have kidney’s anymore, He runs on dialysis 3 times a week any information you can give me is most appreciative.

For patients on dialysis, it is important to consult with the dietitian who is assigned to your son on dialysis.  The diet recommendations are made on the basis of drawing frequent laboratory assessments on your son and then adjusting his … Continue reading

Posted in Ask the Doctor, Chronic Kidney Disease, Dialysis, Diet/Nutrition, Kidney-Related Health Questions, Laboratory Testing, Polycystic Kidney Disease, Symptoms and Side Effects, Treatments

Hello, I am a 35 year old female. My mother had polycystic kidney disease requiring dialysis. We do not know which type she had and as far as we knew, no one else in the family had it. However, there was a question of whether it was possible that my grandfather had kidney problems. Anyway, since my mother had PKD, I am nervous that I could potentially have it. I have had a renal ultrasound done at age 31 which revealed no cysts. I was born with pulmonic valve stenosis. I understand that PKD patients could have valvular problems. I guess my question is, should I still be concerned despite the negative renal ultrasound that I could potentially have it or develop problems later in life? Or does the negative ultrasound in my 30s indicate that I likely wouldn’t have it? I am really looking for some peace of mind and maybe some advice in terms of surveillance (of if I even need surveillance). Thanks!

If you do not show any cysts by age 30, it is unlikely that you have Adult Type Polycystic Kidney Disease (ATPCKD).  If you have an ultrasound at age 40, and there is no cysts, then you can be very … Continue reading

Posted in Ask the Doctor, Chronic Kidney Disease, Dialysis, Kidney-Related Health Questions, Laboratory Testing, Polycystic Kidney Disease

Hello, I was just formally diagnosed with PKD today. However, last week after my U/S I was given a login to the American Radiology patient portal that would allow me to access all of my previous images along with the new ones once they were reviewed by my Dr. While browsing through my file, I came across a report for a MRI 2 years ago suggesting PKD as there were numerous cysts found in both kidneys of multiple sizes. This particular scan was to rule out MS at the time. This went overlooked until recently when I found that my dad (66 years old) was just recently diagnosed with stage 5. I immediately reached out to my Doctor to get checked as all of the signs from back then and now all point to this; mainly the sudden onset of high blood pressure back then. Looking back on a blood test that I had back in Sept 2016- my Serum Creatinine levels were at .73. Back in June 2015 it was .84. After giving me the news today, she didn’t seem too concerned and told me to come back for a blood test in 2 months and she switched me to Lisinopril 20mg. I want to be sure that this doesn’t get brushed under the rug any more than what it has. I have a lot of cysts in each kidney measuring more than 3cm in size. Both kidneys are enlarged, however, my left kidney is outside the normal adult size range. Seeing all of this information not to mention it being in my file for 2 years without coming to light; really worries me that I received a lack of knowledge of what I should do as far as dieting, pain killers, etc. (things that I’ve found on the web) going forward. Am I over reacting? Will a kidney specialist not schedule to see me since I am not at a late stage?

Polycystic kidney disease (PCKD) is often a silent disease that may not be detected until you have a scan for other reasons.  You should have annual testing for blood and urine to measure your kidney function and your blood pressure … Continue reading

Posted in Ask the Doctor, Blood/Urine Testing For Kidney Disease, Chronic Kidney Disease, Kidney-Related Health Questions, Polycystic Kidney Disease, Symptoms and Side Effects, Treatments

I just received my MRI results for my lower back. Included in the report a notation about cortical cysts on right kidney. I have had fatigue, raised blood pressure, currently on medication for diabetes and other related symptoms to PKD. I am the daughter of a positive hep c paternal father who infected my mother and carried to fetus. I have never been tested. I have had two surgeries to remove bladder cysts, they were benign but I was still given an interferon wash internally. In a previous sonogram I learned that I had an enlarged liver. Dr. did not seem alarmed at that time. I do not know where to begin first. I am very scared and lost.

I am unable to provide a specific diagnosis based on the information that you provide.  I suggest that you contact your primary care physician (PCP).  When there are a number of issues to deal with, I find it best to … Continue reading

Posted in Ask the Doctor, Chronic Kidney Disease, Diabetes, Kidney-Related Health Questions, Laboratory Testing, Polycystic Kidney Disease, Treatments

I have PKD, end stage, and I have been waking up with puffy eyes for at least 2 months and now my face and neck are swollen so bad that my chin is not definable. Is this because of the kidney disease or because I haven’t had dialysis in over a month?

I suspect that your swelling is due to both your chronic kidney disease (CKD) related to your Polycystic Kidney Disease (PCKD) and the lack of dialysis.  I suggest that you contact your nephrologist for proper care. For more information on … Continue reading

Posted in Ask the Doctor, Chronic Kidney Disease, Dialysis, Kidney-Related Health Questions, Laboratory Testing, Nephrologist, Polycystic Kidney Disease, Treatments

My dearest friend has PKD and suffering with a migraine. We have no pain reliever and no money. Is there anything I can do to help relieve her pain? Please, I have been to several free sites that are not free I can’t buy her a Tylenol much less pay for advice.

I am not an expert in treatment of migraine headache syndrome.  Resting in a dark quiet room has been advocated by some.  I do not know of any other non-medicinal treatments.  Tylenol (generic acetaminophen) is safe for patients with polycystic … Continue reading

Posted in Ask the Doctor, Kidney-Related Health Questions, Polycystic Kidney Disease, Treatments

Dr. Spry. My wife had a child with her previous husband that was born with PKD and died a year later. She had another daughter with him that is 28 years old now and we had a son together who is now 19 years old. My question is what is the best way to find out if my step daughter and my son are at risk for developing PKD. My assumption is that we should get my wife tested to see if she is a carrier. However without any medical insurance I am afraid that genetic testing would be impossible due to lack of financial means. Thank you so much for taking the time to help those in need.

There are two possibilities.  This could be either autosomal recessive Polycystic Kidney Disease, (ARPCKD) or this could be early onset of autosomal dominant Polycystic Kidney Disease (ADPCKD).  If this is ARPCKD, the only way to really tell is for your … Continue reading

Posted in Ask the Doctor, Chronic Kidney Disease, Kidney-Related Health Questions, Polycystic Kidney Disease

My husband is 61 and has PKD. What causes his potassium to keep dropping?

In most instances, a low serum potassium is either inadequate intake of potassium or he is taking a medication that is causing the kidneys to waste potassium.  Diuretics and laxatives can cause low potassium.  Polycystic kidney disease (PCKD) is not … Continue reading

Posted in Ask the Doctor, Chronic Kidney Disease, Kidney-Related Health Questions, Laboratory Testing, Polycystic Kidney Disease

How serious are polycystic kidneys and how can it be treated?

Polycystic kidney disease (PCKD) is the most common genetic kidney disease.  You can review PCKD on our web site at:  https://www.kidney.org/atoz/content/polycystic You can also visit the web site for the PCKD Foundation at:  http://www.pkdcure.org

Posted in Ask the Doctor, Chronic Kidney Disease, Kidney-Related Health Questions, Polycystic Kidney Disease