Cysts but No PKD Diagnosis????

[Black]

Sorry guys, but this is somewhat of a rant against medical professionals, especially doctors, who don't do their jobs, but I also need input on a question about whether or how I should talk to my friend

My best friend, age 59, recently had a routine physical with an ultrasound and CT scan --  routine monitoring of uterine fibroids which she has had for many years.  This time they are recommending hysterectomy.

BUT, she just went back over the reports from a ultrasound she had OVER A YEAR AGO and found that on the report they had noted numerous small hepatic and renal cysts.  Her doctor never mentioned that finding.  She also has a couple of cysts on one ovary and a couple of nodules in her thyroid and a small simple cyst in her throat which her ENT is monitoring.  She had kidneys stones over 30 years ago, but no UT problems since.

She called me VERY upset because no one had told her she has PKD but she now suspects it from hearing about PKD info from me and looking at her old reports.  All of her blood work is well within normal range and there is no family history.  Other than the gyn problems, she is very healthy and looks 15 years younger than her age -- but now that she has seen the notation on the old ultrasound she is very concerned.

She has excellent insurance through her husband's job and expects to have it until he retires in about 5 years.  She also already has life insurance, so insurance is not a consideration.

She is concerned about her four siblings, her two children, and three grandchildren.  Her father could have had PKD but since he died several years ago (from a hospital infection while there for some minor surgery) there is no way to know.

I want to suggest that she go see a nephrologist and have them review her tests, but I don't want to alarm her because she is already dealing with the fact she is going to have to have a hysterectomy due to the fibroids, a prolapsed bladder, and the cysts on her ovary.  I think it is important that she get the PKD diagnosis first as that may influence how the hysterectomy is handled, so I guess I have to speak up, but should I?  If so, how do I tell her?  There is the slim possibility that she doesn't have PKD.  I guess I'm mostly just afraid for her, but I'm upset that I may have to be the one to tell her to go see a nephrologist.  Why has not one of the medical professionals who have seen her records even considered that she may have PKD?  Did they not notice?  Did they decide not to tell her?  Or did they not put it all together and come to that conclusion?  Why did no one suggest she see a nephrologist?  Should I suggest it?  How do I tell her?

She is my wonderful, sweet, intelligent, supportive, best friend -- she has been my rock through all of this with Mike, and I am so afraid for her.  If she has PKD it will be another blow by this horrid disease to someone I love.  I hate this!!!

Lorelle  (Mod: not sure this is the right place for this post, so move it if you want.)

[jbeany]

Tell her that your experience with Mike has made you overly cautious, but you really want her to go see a neph to make sure she is okay.  Ask her to do it as a favor to you, because you will not be able to stop worrying about her otherwise.  The docs may not be taking it seriously because they don't see any problem with her current bloodwork, but if she does have cysts, she should know now, not when it becomes a serious problem.

[Rerun]

Good Advice Jbeany.  It may not be PKD.

[Black]

Tell her that your experience with Mike has made you overly cautious, but you really want her to go see a neph to make sure she is okay.  Ask her to do it as a favor to you, because you will not be able to stop worrying about her otherwise.   The docs may not be taking it seriously because they don't see any problem with her current bloodwork, but if she does have cysts, she should know now, not when it becomes a serious problem.

Great idea!!     "Do it for me."  Thank you, thank you, thank you!

[Ken Shelmerdine]

If as you say her bloods are OK, then it sounds like she has simple cysts which I think are pathologically different than PKD cysts and are therefor harmless.

[okarol]

My dad died at 28 years old from a cerebral hemorrhage, the result of long term hypertension, caused by PKD.
I avoided being diagnosed for PKD all these years as I had been told by a doctor friend that it may affect my
ability to buy health insurance in the future, and that as long as I routinely monitor my blood pressure, there
was nothing else that could be done for PKD. My two sister and my brother all went and had ultrasounds done,
and were diagnosed with PKD. The only treatment done was blood pressure meds when they got to the point
where they needed them. Thankfully, so far, they are doing ok. I mention all of this, because I wonder if
there isn't a reason to worry if the blood pressure is normal?  What is the benefit of knowing, if there are
no symptoms? Sorry if this sounds naive, but this has been an ongoing discussion in my family for years,
and we still really don't know the answer. The doctor also told me that some people have PKD, but they
live to be in their 80's, die from something else, and the PKD is only observed if an autopsy is performed.
In other words, it's possible to carry the gene, but not ever be severely affected by PKD. This is why its
passed on from generation to generation, and people never knew it existed in their family!

I guess the best reason to know at some point is to be able to let your children know that they each have
a 50% chance of getting PKD as well. But beyond that, does this woman need to be alarmed? I'm not sure.

[jbeany]

I guess the best reason to know at some point is to be able to let your children know that they each have
a 50% chance of getting PKD as well. But beyond that, does this woman need to be alarmed? I'm not sure.

I think being informed is always the better choice.  Even if the only thing she does differently is remember to check her blood pressure once a month instead of once a year at the doctor's office, it could still save her a great deal of grief in the long run.

Adult diabetes runs rampant on both sides of our family.  Knowing this, my sister has me check her blood sugar every time she comes back home to visit.  Once a year at the doctor's office just isn't enough.  I was diagnosed with juvenile at 13, so my 8 yr old nephew gets his checked whenever he's here as well. 

Blood tester - 44 cents.  Lancet - a nickel.  Peace of mind - priceless!

[charee]

I have PKD and only got diagnosed because of serve flank pain had an ultrasound and there they were that was 5 years ago now i have 9% function left and waiting to start dialysis. I had high blood pressure in my late teens and had been on blood pressure medication since then was told it was probably heredity (the high blood pressure) but now they know it was from pkd maybe if i knew earlier in life i could have saved some kidney function Who knows . Both my boys were tested and have found to have it also one looks after himself but the elder one thinks he should have a good time now still drinks and smokes to much...

[Ken Shelmerdine]

I mention all of this, because I wonder if
there isn't a reason to worry if the blood pressure is normal?  What is the benefit of knowing, if there are
no symptoms?

Even if you have no symptoms and your blood pessure is controlled, you could still be carrying excess toxins in your blood which your kidneys have failed to clear. If left untreated it can have long term effects on other vital organs in your body particularly the heart if your potassium gets too high. I know it's hard to come to terms with if you feel perfectly well without dialysis and the dilemna is do I take a chance and choose to live without dialysis even if blood lab measurements are heading off the scale.  Or, wait until I start experiencing symptoms and then go on dialysis. My renal doctor said 'Why wait until you feel ill before you start dialysis?' She went on to say that if I chose home dialysis particularly CCPD it would mean trying to cope with the catheter surgery and cycler training feeling so Ill  you can hardly be bothered. I too have PKD, I decided on the first option, very reluctantly I might say and I have made a decision that if I am still symptom free in 18 months time (been on dialysis 6 months now) then I will quit dialysis and take my chances. 

[Black]

...What is the benefit of knowing...

Because it appears that there are ways to delay the progression of PKD -- slow the multiplication and growth of the cysts -- and delay kidney failure.

avoid caffeine  (caffeine appears to promote cyst growth and multiplication)

avoid nicotine  (it appears to accelerate kidney failure)

make an effort to drink enough fluids to keep the urine very dilute and/or use diuretics (dilute urine places less stress on kidneys)

increase potassium intake and monitor levels often (PKD kidneys tend to spill potassium)

control BP (higher BP appears to increase growth and multiplication)

insist on calcium channel blockers (they appear to slow growth and multiplication)

bicarbonate of soda  (metabolic acidosis promotes growth and multiplication)

[okarol]

Thanks Black,
I had heard of a few of your suggestions, others are new to me. But I thought that these were
steps to take once someone already had significant loss of kidney failure, that may delay symptoms.

According to the PKD Foundation:
At this time there is no specific diet that will make polycystic kidneys better or keep them from getting worse.

They do mention reducing protein, avoiding salt and caffeine and to drink lots of water.

Another section regarding some studies that have been done says:

Results from both animal and human studies show that certain diet and lifestyle factors may help protect the kidneys and delay some of the symptoms of PKD.

PLEASE NOTE: The following dietary recommendations are focused on PRE-DIALYSIS patients. Diets change dramatically for dialysis patients so please consult your nephrologist for information specific to you.

Changing some of your diet and lifestyle habits is not easy, but its one of the most empowering ways you can positively affect your health. Following are eight tips for a healthier future:

   1. Reduce stress in your life!
      Most people live at a higher level of health if they are happy. Stress causes cysts to grow faster by elevating adrenaline. The first and most powerful step you can take toward wellness is to practice relaxation and eliminate as many stressors from your life as possible.

   2. Avoid inflammation
      Anything that causes inflammation in the kidney can accelerate the growth of cysts in PKD. Stress, hypertension, excess animal protein, food allergies, pesticides, alcohol, smoking and a deficiency in omega 3 fatty acids can all cause inflammation in the kidneys.

   3. Eat a (mostly) vegetarian diet high in antioxidants
      Diets based on plant proteins help lower blood pressure and may help slow the growth of kidney cysts. Animal studies have demonstrated that a low protein diet helps slow the progression of PKD. Human studies have also shown a positive effect, especially if implemented before severe symptoms appear. Sources of protein are meat, fish, milk, cheese, and legumes, although animal source proteins seem to cause more symptoms than vegetable sources.

      Aim for no more than 0.8 grams of protein per kilogram of body weight, per day. To calculate your weight in kilograms, divide your weight in pounds by 2.2. Multiply that number by 0.8 to get your recommended amount of protein per day. Brightly colored fruits and vegetables, whole grains and legumes are rich sources of antioxidants which may help protect the kidneys.
   4. Try Soybeans
      Many studies in lab animals show that soy protein slows the progression of PKD. Epidemiological studies from Asia show that people who regularly eat soy protein have slower rates of PKD than those in Western cultures who do not consume soy. Soy contains antioxidants (isoflavones) and essential fatty acids that help cool down inflammation in the kidneys.

   5. Choose low sodium foods and condiments and try to limit caffeine
      Try to eat less than 3000 milli-grams of sodium per day. Low sodium diets help reduce blood pressure and in lab animals, helps slow the progression of PKD. Caffeine may hasten the progression of PKD by elevating blood pressure.

   6. Load up on potassium rich foods
      Recent studies show that lab rats fed low potassium diets have larger kidney cysts than those fed high potassium diets. High potassium diets help slow the decline in kidney function (Glomular filtration rate, GFR) in rats. If you supplement, choose potassium citrate. Low citrate levels are linked with kidney stones in PKD patients. Highest dietary sources of potassium are potatoes, tomatoes, oranges, legumes, apricots, avocado, bananas, peaches, apricots, and most tropical fruits.

   7. Get your Omega-3's
      Studies with rats show that ingestion of omega 3 fatty acids, a type of essential fat that we can only get from the diet, helps reduce inflammation and slows the progression of PKD. Many Americans are deficient in these fats due to eating processed foods and not eating enough green vegetables. Good dietary sources are flax seeds, walnuts, cold water fish (salmon, halibut, cod, flounder, sole, pollock), soy beans, and green leafy vegetables.

   8. Eat high fiber carbohydrates
      Recent studies have found that people with PKD and other kidney diseases may be mildly or acutely insulin resistant. High insulin levels are linked with heart disease and possibly faster rates of PKD progression. Fiber helps slow down the digestion of carbohydrate foods and may help reduce some of these risk factors. Good sources of fiber are whole grains, legumes, nuts, vegetables, and fruit. Aim for at least 30 grams of fiber per day.

In summary:
Although animal studies clearly show a benefit, more human research needs to be done on most of the recommendations above before we know definitively that they can work to help slow the progression of PKD. Until then, you can be certain that all of the recommendations are safe and are dietary and lifestyle factors that can improve anyone's health. You can invite your whole family to make the changes with you!

Where did you learn about diuretics, calcium channel blockers and bicarb? I'd like to get more information.