Polycystic Kidney Disease

miss flutter ups · 07-07-2013 4:03pm #1

I was recently diagnosed with this disease. It came to light after I got really sick 6 weeks after having my baby. I had a REALLY bad kidney infection so was in hospital for a week and went for a number of scans.

The first consultant basically said I was doomed and would have kidney failure by the time I reach middle age (am 23). The second consultant said there's nothing to worry about, that I'll just need to keep an eye out for infections.

I really haven't a clue what to think? Am waiting to see kidney dr.

Does anyone have any experience with PKD? I suppose I'm just wondering how it might restrict my life down d line. For eg. I heard you shouldn't have anymore kids?! Should limit salt and alcohol etc

Ffs I thought my frizzy hair, IBS and scoriasis was my lot

Any insight at all would b really appreciated, am afraid to google it as a lot of websites can over exaggerate!

Thanks

wretcheddomain · 07-07-2013 4:17pm

Sorry to hear about your recent diagnosis and this isn't a particularly good condition to be saddled with.

As I'm sure you've been informed, it involves the formation of multiple cysts (poly- meaning many) in the kidneys however it's not uncommon for cysts to form in extrarenal (outside the kidneys) locations, which can cause secondary difficulties. It is, however, a genetic condition, characterised as either one of two forms; Autosomal Dominant or Autosomal Recessive, I assume you have the dominant version as it's the most common?

Common difficulties associated with this disease are usually hypertension (hence the reduction in salt as your kidneys will lack the ability to properly control water levels) and kidney failure. 1 in 2 people with this condition will eventually require (maybe by 50 or 60) dialysis or even a kidney transplant. This is the reality of the situation regardless of what the doctors have told you. Obviously, I can't dish out medical advice so I'm restricted to talking about the condition here.

Most people experience symptoms between 30-50 such as blood in the urine, painful abdomen, kidney infections, hypertension, and possibly even kidney stones. However, some people may not suffer many symptoms at all while others do, it's dependent. As well as the long term difficulties with progressive loss of kidney function and hypertension, approximately 10% of people with this condition can suffer a brain aneurysm, which is a potentially very serious condition indeed, but nonetheless 90% do not get one.

You mentioned pregnancy - well, if a person has autosomal dominant polycystic kidney disease (ADPKD), they are much more likely to suffer pre-eclampsia, but the vast majority of pregnancies are normal.

Hope this answers your question. If you've any other questions, pop them up.

miss flutter ups · 07-07-2013 5:04pm

wretcheddomain wrote: »

Sorry to hear about your recent diagnosis and this isn't a particularly good condition to be saddled with.

As I'm sure you've been informed, it involves the formation of multiple cysts (poly- meaning many) in the kidneys however it's not uncommon for cysts to form in extrarenal (outside the kidneys) locations, which can cause secondary difficulties. It is, however, a genetic condition, characterised as either one of two forms; Autosomal Dominant or Autosomal Recessive, I assume you have the dominant version as it's the most common?

Common difficulties associated with this disease are usually hypertension (hence the reduction in salt as your kidneys will lack the ability to properly control water levels) and kidney failure. 1 in 2 people with this condition will eventually require (maybe by 50 or 60) dialysis or even a kidney transplant. This is the reality of the situation regardless of what the doctors have told you. Obviously, I can't dish out medical advice so I'm restricted to talking about the condition here.

Most people experience symptoms between 30-50 such as blood in the urine, painful abdomen, kidney infections, hypertension, and possibly even kidney stones. However, some people may not suffer many symptoms at all while others do, it's dependent. As well as the long term difficulties with progressive loss of kidney function and hypertension, approximately 10% of people with this condition can suffer a brain aneurysm, which is a potentially very serious condition indeed, but nonetheless 90% do not get one.

You mentioned pregnancy - well, if a person has autosomal dominant polycystic kidney disease (ADPKD), they are much more likely to suffer pre-eclampsia, but the vast majority of pregnancies are normal.

Hope this answers your question. If you've any other questions, pop them up.

Thanks so much. Would love to have more kids, I wonder would it be considered selfish as in, the baby might have it. But then it's hardly an automatic death sentence.

I've put it to the back of my mind but I'll have to get used to it!

The blood in the urine and pain in the sides along with really bad fever was how I ended up in hospital. It was back in February when there was ads every saying if U have a virus don't go to your gp/let it pass. Stupidly I thought it was a virus so didn't seek help until I hit rock bottom!

In relation to it being passed down by parents, do U think it would be medically wise (as an adoptee) to inform my natural parents of my/their condition? As in, would an early diagnosis be beneficial to them? (they'd b in the late 30s) I don't mean that question in a personal way, just in relation to health.

Ps, its autosomal dominant

wretcheddomain · 07-07-2013 5:15pm

miss flutter ups wrote: »

In relation to it being passed down by parents, do U think it would be medically wise (as an adoptee) to inform my natural parents of my/their condition? As in, would an early diagnosis be beneficial to them? (they'd b in the late 30s) I don't mean that question in a personal way, just in relation to health.

If they're in their late thirties, statistically speaking they may not have expressed it. Usually this condition erupts earlier and hence it would always be more beneficial to tell brothers and sisters around the same age as opposed to parents who would otherwise know if it had expressed itself. It's important to note that a particular gene may be carried for a condition but not expressed.

In addition, in a small number of cases, maybe 10%, it's not carried down by parents. So personally, I wouldn't mention it unless you really wanted to.

miss flutter ups · 07-07-2013 5:20pm

wretcheddomain wrote: »

If they're in their late thirties, statistically speaking they may not have expressed it. Usually this condition erupts earlier and hence it would always be more beneficial to tell brothers and sisters around the same age as opposed to parents who would otherwise know if it had expressed itself. It's important to note that a particular gene may be carried for a condition but not expressed.

In addition, in a small number of cases, maybe 10%, it's not carried down by parents. So personally, I wouldn't mention it unless you really wanted to.

Brill

Thanks very much

Polycystic Kidney Disease

Comments