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!
If you are looking for another group for support. If you have a Facebook Page. I also found amazing group there. People in all stages of the Disease https://www.facebook.com/groups/LivingWithPKD/
You might want to start a new discussion to increase you chances of some responses. The thread you've added to is very old!
You could look at your challenge a different way - how to maximise the life of your kidneys beyond the age of 75 so that you never need a transplant/dialysis. With good care, the right diet etc this may be perfectly possible. Also, you're looking ahead 20 years and that's a long time. So much can change in that time, it's not really something you can easily plan for. You're at risk of spending 20 years worrying and eroding your quality of life as a result. It doesn't follow that you will be the same as your mother and other relatives. You have been diagnosed earlier and care is better than it used to be. I would concentrate on preserving your kidneys and you may never need renal replacement therapy at all.
Chewitt