Do what your doctors are recommending for now and make sure you see a nephrologist. Talk to him about everything and ask your questions, write them down and take them with you so you don't forget any. It's easy to get distracted while you're there and forget to get them all answered! Make sure you take a tour of this website to learn what you can, there's a boatload of information here.

 

If you're 46 and don't have any problems related to PKD such as high blood pressure or reduced kidney funtion, I wouldn't worry too much either. Many people who have PKD are never even diagnosed with it and die of old age, they never even knew they had it. 40% of those diagnosed never have a problem. Since you may not even have PKD, you don't want to worry about something you don't know.

 

However, if I were you I would take this opportunity to make sure that I lived a very healthy and happy lifestyle. No smoking, drink plenty of water, avoid salt (stay away from packaged, pre-prepared, canned, cured, pickled, etc. foods), maybe reduce your protein intake but don't do this without the advice of your doctor or nephrologist or registered dietician, eat healthy, get plenty of excercise, and have fun! Your body will thank you, whether you have PKD or not. Your 40's always seems to be the time when all your previous bad eating and lifestyle habits come back to bite you in the butt!

 

Good luck with everything and keep us posted!

 

Susan,

Genetic testing isn't required for PKD; the presence of a 3-4 cysts IN each kidney is generally sufficient for a diagnosis (the emphasis is IN versus on the kidney).  However, as your urologist stated, there are other cystic kidney diseases, but they are much more rare.  Many people never know they have PKD because they have no symptoms (such as your case where they were looking for something else and just happened to find cysts).

 

As Katie said, there are things you can do for your health that will benefit you whether you have PKD or not.  And even if you do have PKD, only about 50% of patients who have PKD develop kidney failure (and that's of the patients who are known to have PKD, there are innumerable patients out there who don't know they have it!).

 

A couple of recommendations:  Talk with your doctor about alternative pain medications.  Regardless whether you have kidney disease or not, NSAIDs are hard on the kidneys.  Check if there are alternative medications you can take that will be gentler on your kidneys but still provide the pain relief you need for the herniated disks.  Herniated disks generally don't cause an inflammatory process, so NSAIDs aren't the only treatment option for pain.

 

You may also want to get your kidney function tested (your primary care doctor can do the testing; it's simple blood work) just to ensure your kidneys are working well.  And get your blood pressure checked as well; at 46 we could all use regular blood pressure checks in order to keep ourselves as healthy as possible.

 

Best wishes,

Ruth

 

 

 

Katie, Ruth  and Shirley,

Thank you so much for your advice and kind words.  It's been overwhelming to me to have such a lifestyle change due to my back and then they drop the PKD on top of that.  I wish I had bad habits to give up! Never drank, smoked, or had bad eating habits.  I was always the active one trying to stay on top of things.  I'm trying to do the right thing medication wise also.  It seems that the bulging disc that I have causes inflammation in the surrounding area.  As long as I take the Mobic (Rx brand anti-inflammatory), I don't have pain.  I am only taking half of what was prescribed since it alleviates the inflammation.  I do have high blood pressure which has always been under control. That's what we always thought ran in the family since we all have it!  It turns out both of my sisters have multicystic kidneys (I told them to get tested when I found out).  I believe that your advice is correct, don't worry about it and enjoy life.  We do everything that we can, but some things are out of our hands.  Thank you all for your advice.  I hope I learn more from you as time goes on.

Susan

Susan,

On the Mobic, I have a severe rotator cuff injury (and about 35-40% kidney function).  My nephrologist was willing to try Mobic, 7.5 mg, to see if it helped the pain, so it must be among the most gentle of the NSAIDs normally he has fits if you even mention an NSAID in his presence!  Alas the meds didn't help, but if it works for you, wonderful. 

 

If your sisters also have multiple cysts IN their kidneys, chances are you all have PKD and so did one of your parents.  It's just that no one was ever had problems and thus no one was ever diagnosed before.  That bodes very well for your future.

 

And kudos to the fact that you don't have any bad habits to break!  Just keep that BP under control (and there are many causes for high blood pressure, PKD is only one of them).  There are some medications (ACE inhibitors such as Zestril and angiotensin receptor antagonists/blockers such as Avapro) that have proven to be more effective at both controlling blood pressure and limiting the damage of kidney diseases than other types of blood pressure medications, so it may be worthwhile talking with your doctor (even your primary care doctor) about those options if you're not already on one of those BP meds.

 

I hope you're able to find a more permanent solution for your back pain soon!

Ruth

Ruth,

Thanks for the info.  You must be/ have been in the healthcare industry ( or should have been!).  You are truly an asset on this board.  I have always been on Diovan HCT (ace inhibitor/diuretic).  It worked, and so we stuck with it.  And, yes, it's 7.5 mg of the Mobic.  He presecribed 15,  but I only take as much as I need, so I cut them in half.  I'm hoping to avoid surgery on my back since most that I've talked to are not much better afterwards.  Only time will tell.  I'm sorry that it didn't work for you.  I hear rotator cuff injuries can be worse than backs.  It's funny because my Mom is still alive, and at 75 has no kidney issues.  My Dad died of cancer at 59 and was scanned every which way in determining if it spread, so I can't believe that if he had cysts that they wouldn't have seen them.  I guess anything is possible.  I've had a renal scan done and a CT (abdomen/pelvis), and will get the results tomorrow.  I'm sure you're right since all three of us have cysts.  Hopefully we will be among that percentage with no issues.  I don't know your circumstances, but I feel for everyone who has a decreased function.  I hope you can stay as you are now and not decrease anymore.  Thanks again for sharing.  It really does help to have someone to talk to.

Susan

Susan,

Thank you!  I had dreams of becoming a doctor once upon a time, but after cramming 4 years of college into 6, I wasn't ready for more school, plus internship, residency, etc.  I retired from the Air Force 1.5 years ago and have been considering going back to that dream of 20+ years ago and start a new career in patient/health advocacy and also getting a nursing degree to add to the professional credentials (have an unrelated bachelor and master's degree already).  In the mean time I'm just an educated patient who emulates the classic two-year old and continually asks why!  I was blessed with very proactive doctors when I was first diagnosed who told me I was the most important member of my medical team, taught me how to read medical journals and always encouraged me to always ask questions before consenting to any treatment.  Thanks to their mentorship and support, I don't hesitate to ask any doctor or other medical professional questions about care, credentials, treatment philospophy and more.  I also take advantage of that pre-med education and keep up my reading.  I've developed an excellent relationship with my nephrologist and can email requests for prescription refills, send him articles about PKD and other kidney issues, ask questions/get answers and more; he's an outstanding advocate not only for my kidneys, but for me as a patient overall (I truly am lucky to have found him).  

 

Your mother may well be the parent with the PKD but if she isn't having problems, there's no reason for her to be screened.  As long as her blood pressure is under control and her kidney function is normal, she's doing fine.  As I mentioned before, only about 50% of PKD patients develop kidney failure and many people never even know they have the disease.  And in this age of fewer autopsies, combined with previous generations not talking about illness at all, many people simply don't know their family medical history.  It may be worthwhile, for curiousity sake if nothing else, to get copies of your father's abdominal CT scans or reports and see if cysts are mentioned.  They are very different from tumors so the doctors may simply not have mentioned them if they were present (doubtful).

 

Oh, on CT scans--no contrast!  I know it's too late for this one, but if they want to do others, no CT IV contrast.  It's very hard for the kidneys to process and can cause severe problems.  The MRI contrast is less dangerous for the kdineys, but it too now has an FDA warning about it's use in kidney patients (can cause an irreversible skin and connective tissue disorder in patients with severely compromised kidney function).  The nasty type of contrast you drink is okay for the kidneys, just disgusting to drink and can cause all sorts of gastroinstestinal distress.  Blech! 

 

Good move on the Mobic; if you get adequate relief at 7.5 mg, why take more.  I'm a firm believer in taking as few medications as possible (I have a dream of never needing meds again, but alas, I doubt that will happen without a magic wand or finding a genie in a bottle...and world peace and a cure for everyone takes precendence over me and my dislike for pills and shots).

 

On the decreased function, many people who don't know they have a kidney disease don't show any symptoms of decreased kidney function until they have less than 25-30% function left, especially if they don't get their blood pressure checked.  Your kidneys are amazingly resilient and you are born with a lot of  excess capacity (which is why people can lead perfectly normal lives after donating a kidney; the other kidney just picks up the load). 

 

PKD can be a bit different, however, because in addition to the high BP, flank pain is often a distinguishing characteristic.  In most non-cystic kidney diseases, the kidneys actually shrink in size.  In PKD the kidneys contine to grow.  What is normally the size of your closed fist can, in extreme cases, become the size of a football!

 

When a cysts ruptures or you get a kidney infection or kidney stone, you can experience pain.  But cystic kidneys, by their very nature and larger size, can also cause pain.  The pain comes from the size of the organs and the pressure they exert on surrounding organs, muscles and tissue as well as the stretching of the capsule that surrounds the kidneys (and liver if it's affected).  Some of the pain is also thought to be neuropathic in origin, with the kidneys pressing on nearby nerves.  But that pain may be referred elsewhere and not always thought to be associated with the kidneys.  In addition, some PKD patients have pain, some don't.  There's no rhyme or reason as to who will or won't experience pain and from personal experience and talking with others, it doesn't necessarily seem related to the size of the kidneys, either. 

 

In addition, each person had their own tolerance for pain; mine is pretty high.  Treatment for pain can vary tremendously by individial as well as the doctor (sadly there are doctors who don't believe PKD kidneys can cause pain); no NSAIDs being the most important consideration.  When my kidneys first started to cause pain I simply too Tylenol every now and then (I also have a very large, cystic liver inhabited by a trio of benign tumors as well; I've named the tumors Huey, Dewey and Louey and my kidneys are Fred and Ethel...if I'm going to live with these "creatures" they may as have names!).  As time went on, I needed a Percocet and a Tylenol.  A few years later only 2 Percocet would provide adequate pain control (and put me to sleep or make me loopy, much to my husband's amusement).  But by last fall pain was taking over my life and I finally went to see my nephrologist and told him I simply couldn't live in pain like that anymore.  So, I started on OxyContin, lowest possible dose, twice per day.  A miracle!  Not only was I not in much pain (I went from a good day being a steady 6 on a scale of 1 to 10, to a 2 or 3), but I can function, drive, participate in a conversation without feeling groggy from medication and generally get on with my life.  Not everyone needs narcotic pain medication, but unfortuntely many patients suffer needlessly and don't get adequate pain control because of the preconceived notions about narcotic pain meds, addiction, etc.  But that's a story for a different day.

 

For you...keep that BP low (below 120/75), keep up those healthy habits and get your sisters and your mother to do so as well.  You're on a good combination fpr blood pressure control.  Many people find that a low dose of the HCTZ (hydrochlorothiazide) combined with the ACE inhibitor gives their kidneys just a little extra kick that they need to keep the BP down nice and low.  And chances are good with your family history that you will never have a problem with your kidneys; they'll keep plugging along forever and you'll just be one of those "accidental" findings of PKD that no one would have known about if they weren't looking for the cause of your back pain.

 

Have you tried physical therapy for your back?  I'm doing physical therapy for my shoulder (92 degree pool) and it's helping quite a bit.  There is a woman in my pool therapy sessions who has a degenerative disk issue with her neck and upper back and finds the pool therapy very helpful for maintaining her range of motion and helping strengthen the muscles to keep the joints aligned.  My brother-in-law has a couple of herniated disks in his lower back and was also a fan of the pool therapy (he too is trying to avoid surgery).  The warmth and buoyancy the water provides is excellent and decreases the pressure on the joints, allowing you much more range of motion and pain-free movement than you get on land.  It might be worth a try.

 

Ruth

PS  I had a chat with Fred and Ethel (my kidneys) 19 years ago when I was first diagnosed and explained to them that they would work forever.  So far they seem to be behaving (I wasn't as specific as to tell them no complications at all, thus they've acted up a bit with high BP, anemia and pain).  And I didn't even think about chatting with the liver, so it's going haywire with cysts.  I'm not sure my conversations had anything to do with how my kidneys are doing, but I figure it can't hurt!   

Good advice, Ruth, but I have to add that kidney cysts do not grow only IN the kidney.  I belong to three PKD support groups and just based on what I read from these members, most PKDers have cysts on the outside of their kidneys and liver.  My own husband has hundreds of cysts growing on his kidneys and liver.  He had them all drained surgically 3 years ago and they counted that they drained 200.  They didn't count the little ones.

 

I rarely get into these message boards but do admire all you people who are so strong and willing to share your knowledge with others.  May God bless you all.

 

Colleen in Georgia

Colleen,

I know it appears that the cysts form on the kidneys, but actually every cyst originates IN the kidney as part of the 1-2% of the tubules which are affected by the defective PKD gene.  Eventually these cysts consume the kidney and appear both IN and ON the kidneys.  The cysts in the liver also form IN the liver from a specific location in the biliary tract (don't recall the name of the exact location; I need to look it up again) but with enough of them they appear both IN and ON the liver.

 

The distinction is important because simple cysts can form ON the organs, but not generally IN them.  Usually these cysts are solitary, but there may be multiple cysts present.  The "IN" diagnosis, along with a minimum number of cysts dependent on age, is diagnostic for PKD/PLD.  Cysts which are simply "ON" the organs are more indicative of simple cysts (which can form for any number of reasons, sometimes just a factor of age) or in the case of liver cysts, a number of different diseases (including a parasite found in parts of Southeast Asia and Africa).

 

In any case, the kidneys generally look horrible and, like the "ugly kidney picture" that the PKD Foundation uses for public awareness shoes, they're covered with cysts.  And for some of us, the liver is equally ugly.  But alas, all those cysts, in the liver and kidneys, started inside and were slowly pushed to the outside as more and more cysts were formed.

 

I hope this helps clarify the "in" versus "on" distinction.

 

Best wishes,

Ruth 

Colleen

I don't know why I couldn't think of it, but the liver cysts originate in the bile ducts.

Ruth