Polycystic Kidney Disease (PKD) Support Group
Polycystic kidney disease (PKD) is a progressive, genetic disorder of the kidneys. It occurs in humans and other organisms. PKD is characterised by the presence of multiple cysts (polycystic) in both kidneys. The disease can also damage the liver, pancreas and rarely the heart and brain.
Hello. I am new to this group. happy to find a support group for this disease. I was just recently diagnosed with PKD. I have NEVER heard of this disease until just now. I have always had frequent kidney infections....some worse than others, but was never looked into more deeply. this last time (2 weeks ago) I was out of town in New Orleans and got really sick (pain in kidneys, high fever, nausea, head ache...) so I ended up in hospital where they did a CT Scan - that is when they told me both my kidneys and my liver was FULL of cysts. Dr at the ER said I had PKD - that was the fist time I ever heard of this disease.
Of course I immediately started reading online and learning more about what PKD is - it was very scary to see all that is online about PKD and how it means your kidneys are most likely failing. especially knowing how sick I was and that I had lots of cysts and been having kidney issues for quite some years now, I was scared and expecting the worst. As soon as I got back home to charlotte I got an appointment to see a nephrologist. The Dr. was very positive and gave me reason to think I might never have any real issues.....he said that although I have lots of cysts in both kidneys and liver, that my kidney function is great. said it was 100% and that it is a very slow moving disease so all to do now is monitor it every 6 months.
I wonder if anyone who was diagnoses with PKD first had good kidney function despite having many cysts and having kidney infections and blood in urine quite frequent???? I am 36 years old, but I am sure I have had this for quite some time as I get kidney infections or pain often since I have been in my early 20s.
please I would like to know if anyone was at first told that although they had PKD it would be fine and if kidney function gets worse in time - how long did that take.
mind you I do have ADPKD 1....that is what dr told me. not sure if that makes any difference.
anyone who can share with me that has had similar issues would be a great help. as I feel a bit lost - part of me wants to be happy and ignore that I even have this disease but another part of me wonders if this is just the natural progression of the disease and how long before I can start experiencing deeper issues?
thank you!
Of course I immediately started reading online and learning more about what PKD is - it was very scary to see all that is online about PKD and how it means your kidneys are most likely failing. especially knowing how sick I was and that I had lots of cysts and been having kidney issues for quite some years now, I was scared and expecting the worst. As soon as I got back home to charlotte I got an appointment to see a nephrologist. The Dr. was very positive and gave me reason to think I might never have any real issues.....he said that although I have lots of cysts in both kidneys and liver, that my kidney function is great. said it was 100% and that it is a very slow moving disease so all to do now is monitor it every 6 months.
I wonder if anyone who was diagnoses with PKD first had good kidney function despite having many cysts and having kidney infections and blood in urine quite frequent???? I am 36 years old, but I am sure I have had this for quite some time as I get kidney infections or pain often since I have been in my early 20s.
please I would like to know if anyone was at first told that although they had PKD it would be fine and if kidney function gets worse in time - how long did that take.
mind you I do have ADPKD 1....that is what dr told me. not sure if that makes any difference.
anyone who can share with me that has had similar issues would be a great help. as I feel a bit lost - part of me wants to be happy and ignore that I even have this disease but another part of me wonders if this is just the natural progression of the disease and how long before I can start experiencing deeper issues?
thank you!
Every one is different with PKD. I was like you in that I was diagnosed in my late 30's. I have maintained excellent kidney function over the years. I am 58 now and my kidney function is 69. I drink close to 4 liters of pure water everyday, eat plenty of fruits, vegetables get exercise etc. I am on BP medication and Vitamin D. Having a cheerful mental outlook helps.
Have you gone to www.pkdcure.org for the PKD Foundations website? It is very helpful in answering questions.
Ask away as we are here for you.
Jessica
1) There hasn't been a confirmed direct link between cyst number or size and kidney function. (You're a good example, so don't worry about that)
2) PKD is a slow progressing disease, as you said, and the best recommendation doctors can prescribe is to try to live healthily like any person should. And water.. lots of water.
Try to not worry too much about it, but do remember there are some ways you can avoid urinary tract infections and kidney stones. I'd research that. i.e. avoid baths, cranberry juice, etc. Water is generally the best thing for your kidneys regarding PKD. See the infamous tolvaptan study.
You also need to remember that when people give advice about PKD it can differ from each stage of renal disease. Advice about eating will be different for you than for someone with end stage renal failure.
there is a big difference between AD and ARPKD which usually affects infants and small children, often with devastating results. what you have is the more common one and the one that affects just about all of us.Jessica is right, PKD affects all of us differently, some may go through their whole life never knowing they have it.
yes you can ignore it but even better would be to get started on a health kick (minus any supplements which may even harm your kidneys).
make water your beverage of choice, cut way back on sodium, low impact exercise, fresh air, no smoking, little to no alcohol, no recreational drugs and avoid any meds that are processed through your kidneys, even aspirin and most NSAIDS.
this is a real support group and we help each other.
The doctor I have seems to know a lot of PKD - he worked in Mayo clinic for many years specifically on PKD patients so I do have to believe he knows what he is talking about. Yet I find it strange he did not recommend doing ANYTHING even hydrating more. he said no mater what it will not change any outcome.
@Jessica - Thank you for sharing, i see you too were diagnosed in late 30s - i wonder.....at that time was your kidney function good? and did you have man cysts in both kidneys and liver? and i see you are now at 69% kidney function....what does that really mean to you? are you living a normal life or do you experience issues constantly?
I would also like to know is it just the kidney function that determines if you will have issues such as needing a kidney transplant etc...or can you have perfect kidney function but still need a transplant or have issues simply due to the cysts and the kidneys growing?
Also, can anyone share if they were first diagnosed with 100% kidney function - and if your function is less now - about how long before your doctors noticed a change and how fast did it happen for you?
Again thank you ALL for your help and advice. I wish you all the best! xoxo
To answer your question: at diagnosis my kidney function was excellent. I had high blood pressure that could only be controlled with medication. It is called Losartan and it protects my kidneys from damage. Over the years my kidneys and liver have grown so many cysts too numerous to count and are grossly enlarged and combined weight of all 3 organs is 12 pounds I was told. This past year my cystic organs compress my stomach so that I am on a soft diet. I am doing fine with this but endure bloating, nausea etc. yes, I lead a normal life. I do get tired more easily nowadays but enjoy golf or skiing occasionally.
What I am concerned about with you is your frequent kidney infections. Discuss with your doctor how you can prevent them. They have the potential to damage kidneys and reduce function. I just read an excellent article on WebMD.com about why women are at greater risk than men for getting UTI's. Prevention is key to keeping your kidneys healthy. I was hospitalized with kidney infection only once in my life and it was from dehydration. Now I am a fanatic about drinking water.
They said in the article that 3 or more infections of urinary tract a year is serious and please talk it over with your nephrologist how to prevent them.
All the best,
Jessica
Welcome to the group. You've been given some very good advice already, but I sense that what you really want to know is how long you will keep good kidney function and for how long you will be able to go on leading a normal life. I understand this, as this was one of the main things about which I sought information in the months following diagnosis. However, it's just not possible to give you a clear answer. As has been said by others, every individual is different, with a unique combination of factors determining progress and outcome. What you do have very much in your favour is that you have 100% kidney function at the moment, and this is not a disease associated with rapid decline.
When diagnosed at age 40 my function was 77%, which is very good. Now, nearly 7 years later, my function is around 50% ie still good. I do have problems because of the sheer size of my kidneys and to an even greater extent, my liver. The massive liver is not a common presentation. No two people in this group will have the same story to tell, so there's little that you can read into our histories. When I was diagnosed, the doctor I saw told me that the question regarding how long you will have until ESRD is unanswerable. Over a period of several years you might start to see a pattern for yourself, but even that can change, as any decline (if it happens) is not necessarily linear. You can have stable function for years, then it may suddenly drop. It may then level out or continue dropping. The one thing that definitely won't change things is worrying about what might happen. This just puts a damper on the life you should be living now.
The best thing you can do is follow the advice you've received for keeping your kidneys healthy. Try to find out what might be causing your frequent UTIs and treat them promptly. Finally, try not to pre live an imagined future full of problems, but instead enjoy your life now.
Best wishes
Chewitt
I completely understand where you are coming from. I am happy that I'm doing well, but it's hard not to have anxiety about the progression of the disease. But it's different for everyone, so the best you can do is take care of yourself and find a doctor who really listens to you.
but about the blood in urine. do you all experience this often and has your dr. said to do anything about it?
thank you
if there is a lot of blood after several trips to the bathroom, definitely seek medical attention.
Dark orange urine merits a visit to nephrologist to check for kidney infection. Prevention of recurring infection is so important. There are several causes for infection. Please get urinalysis as soon as possible.
Keep us posted on your progress.
Best wishes,
Jessica
I have aches and pains in the kidney region from time to time, no other symptoms at all.
so my guess is the disease is different for everyone. I have no family with this disease. it can be very scary and confusing the more you research it, but I like to have all the information so I can feel that I have a little control so things don't pop up and surprise me. good luck with your situation
Welcome to our group. There are many things we can do to keep our kidneys healthy. The studies with the drug Tolvaptan showed drinking lots of water, 3-4 liters a day can slow down and even stop the hormone vasopressin. This slows down the growth of kidney cysts.
EGfr fluctuates. I have had it go down to 45 and then 6 months later it is back up to 69. Anything above 60 is considered good. Continue to enjoy life and try not to have anxiety about future. www.pkdcure.org really helps answer many questions. Do you have a good nephrologist?
Ask any questions you like.
Best wishes
Jessica