Hi, Danielle. Welcome and Happy Birthday!

Not everyone with PKD has cysts in other organs. About 83% have liver cysts but liver functin is not affected. While women with PKD have a higher probability of having ovarian cysts, many women get them as normal course and many of the ovarian cysts normally disappear.  Your doctor is correct in saying that acetominophen is the only pain pill you can take that will not be bad for your kidneys. Most nephs can tell you about how long you will have until you will need to go on dialysis and/or obtain a transplant, but it is not an exact science. Right now there are human trials of some drugs that might be helpful in slowing down the growth of kidney cysts and liver cysts. If  you go to the  PKD Foundation's site at www.pkdcure.org and click on Clinical Trials you can find out how to go about possibly getting into the trials. There is also information about PKD on the site. You can download sessions f rom past PKD conferences also. PKD does NOT "move" to other organs. Having cysts on other organs is usually a genetic predisposition if you have PKD. Some of us have other cystic organs while others don't.

With all the things we know about PKD and all the research going on, there is every reason to think that treatments, if not a cure, for PKD wioll be found soon.

Please think positively.

Barb

Hi Danielle,

Welcome to the group and Happy Birthday!

Just to let you know, the doctor is telling you that the disease will hit you during your 40's or 50's because that's usually the average age that someone would start feeling the effects of it, IF the disease does affect them at all. 40% of people with PKD don't suffer kidney failure. I would suggest like the others that you check out this website to see the links to so much information, it's all organized down the left-hand side. It should allay alot of your fears.

Tylenol is a good option for discomfort but there is a limit to how much you can take. Do you have a nephrologist yet? They are pretty knowledgeable about what you can take for pain. They are also an excellent resource for information.

The disease will not shut down your organs one by one. It normally affects ONLY the kidneys though there are some people who experience liver issues or ovarian cysts as well but I don't think they're in the majority. There is no stopping PKD, it's genetic so you're born with it or you're not. It will not progress quickly and you may not suffer kidney failure either.

What my nephrologist told me when I was first diagnosed was that PKD won't kill me if I am compliant with my medications and treatments (diet, excercise, etc.), but the complications would (again, if I was not compliant).

My best advice to you is to live healthy. Eat healthy, don't smoke, drink plenty of water, avoid salt and salted foods (read labels and stay away from canned, cured, pickled, pre-prepared, packaged foods and watch out for fast foods since they are normally way too high in salts), and get adequate excercise. You may want to watch how much meat you eat since most people eat too much and while it's not proven, there is a thought that lowering the protein intake is helpful. I would also caution you to stay away from anything that is promised to be a "quick fix" or "miracle cure" because there isn't any. Any supplements or herbal remedies or other types of medication that you take should be discussed with a nephrologist.

Another excellent piece of advice is to relax and enjoy your life. Don't spend so much time worrying today that you miss out on things. Do remember that there are millions of people in this world far worse off than you are. Don't spend your time mired in misery, it's not healthy and it's no fun. Life is a beautiful and precious thing.

Remember, knowledge is power so do the best you can to learn about PKD and make sure you keep posting any questions you have. It will certainly settle your nerves to find out how many of us have PKD and how we cope with it.

Good luck!  

Danielle,

I was diagnosed with PKD when I was 26; I'm now 45.  Over those intervening 19 years my kidney function has gone from 79% to 35-40%; it's been a very slow decline and seems to have plateaued.  It's important to know that only about 50% of PKD patients end up in kidney failure.  When your doctor said kidney failure in your late 40s or early 50s, that's because the average age for kidney failure for PKD patients is 53 for those who have the PKD 1 gene and 63 or older for those with the PKD 2 gene (doctors don't test for which gene you have as it doesn't matter for treatment purposes).

 

That said, I've also had 19 years to come to terms with having PKD, learn as much about this disease as I can, hired and fired a multitude of doctors, and become my own medical advocate.  I've also been mad, frightened, sad, elelated, convinced no one would ever want to spend their life with me, frustrated, happy, depressed and experienced a multitude of other emotions.  I still experience a full range of emotions and some days are better than others.  However, I find that the more I learn and the more I advocate for myself, the better off I am.

 

Kidneys can hurt.  Mine hurt, my right more than my left.  And mine aren't all that big, either.  It's not in your mind; it's in your body.  I started with Tylenol for pain, taking it only when the pain was at the point where I couldn't stand it and heat wasn't enough.  As time went on I had to increase the amount and type of medication,  tylenol with codeine, then Percocet.  And now I take OxyContin every day.  The reason your doctor said Tylenol only is the non-steroidal anti-inflammatory medications (NSAIDs) such as ibuprofen (Motrin) and naproxen (Aleve) have been shown to cause irreversible kidney failure in people with underlying kidney disease.  It's simply not worth the risk to take them when there are other pain relieving options available.  However, if Tylenol isn't enough, tell your doctor and ask for something stronger to take when the pain is too much. 

 

However, my brother, who also has PKD, has no pain in his kidneys at all unless he does something to hurt them (falls) or does a lot of seakayaking and forgets to roll down the waist-height seal of his kayak (otherwise it presses on his kidneys). 

 

I have cysts in my liver, as do close to 80% of PKD patients (and a large number of the general population as well).  My liver is very large, but some people only have a couple of small cysts and others have none.  Sometimes my liver hurts too.  But it works wonderfully despite the cysts.  Most poeple with PKD develop cysts in their liver but they very rarely affect liver function. 

 

You can also develop cysts in your pancreas, spleen, ovaries, testes, breasts, lungs, and other organs.  However, these cysts generally don't affect the function of the organs; they're simply there. 

 

Your left kidney is naturally larger than the right because your liver is on the right and limits the size of your right kidney.  Most people don't know this because no one generally measures kidney size unless there's a reason to do so.

 

Cysts in the ovaries are not uncommon for women of childbearing age and may or may not be related to PKD.  Often they're considered fucntional cysts and go away after a cycle or two.  And while birth control pills can control the formation of  cysts in the ovaries, they're not always recommended for people with PKD as there is some evidence that the hormones can increase the formation of cysts in the liver.

 

Pain:  It sucks.  But there are many treatment options.  Have you tried using heat?  I find the thermacare heat wraps that are designed for the lower back work great when wrapped around my middle and placed over the offending kidney.  Granted, I'm on OxyContin now, I've also found that looser clothing, lower waistbands, heat and lots of water all help.  Water intake makes a huge difference for me; if I don't drink enough water my kidney pain is much worse than when I drink enough.  There are also some surgical options you can explore if medication doesn't work, fenestration, sclerosing, etc.

 

I understand that you're frightened and frustrated right now and fully understand that.  I was there; most of us were.  And we still are.  But you will survive this diagnosis and go on to lead a wonderful, full life.  Keep talking, asking questions and learning.  PKD isn't the end of the world even though some days it feels like it.

 

Gentle hugs and welcome,

Ruth

 

Danielle....I know you are nervous....The Dr. are close to their prediction,altho everyone reacts different...I was told back in 1978 that I would be in my fifties or sixties before anything would happen,and he was right..I had gone down to the Mayo in '78 and that is where he told me that...I was 28 and now I am 56..had my transplant in 2001......So I was 50....when I was told I was in kidney failure,they gave me a yr. and he was right about that too....I am seeing a nephrologist in St.Cloud,Mn....he is one of the best in his field..I have alot of faith in him..I had my transplant at the University of Minnesota in Minneapolis...Please don't think the worst,altho I know how you can think that way...My nephrologist told me that he has patients who are 20 yrs.post transplant...I am sorry about your pain..alot of people suffer with that...I didn't so I really can't comment on pain relief....If you need any other questions answered write back to me,I will do the best I can to tell you my journey with kidney disease from beginning to end...Take care...Diane