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| | (1 recommendation so far) | Message 1 of 12 in Discussion |
| | From: Lindsay g (Original Message) | Sent: 6/5/2008 9:21 AM |
Hi I'm Lindsay, My Father in Law was diagnosed with PKD a few weeks back. My Husband is currently undergoing tests as he does suffer from some of the symptoms of PKD but was not aware it was in the family untill last week. He has his Kidney scan tomorrow so hoping he will be clear. We have 2 children, Maks is nearly 6 and Scarlett is 4 so they will have to be tested as well if my Husband is found to have PKD. I'm kind of going in to panic mode at the moment as I don't know a great deal about the condition. All I know is that there is a 50% chance that my hubby and then in turn our children could have it, and if this is the case they will probably go on to need dialasys and or a transplant, which all sounds pretty scary right now. I'm gonna have a look through some of the stories on here so I can try and get a better understanding of what to expect and read about your experiences with PKD. Nice to meet you all. Lindsay |
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hi Lindsay and welcome to the best support group on the internet. first I want to very strongly suggest that you do NOT have your children tested for PKD. for starters, your father in law is only now having problems with it. my guess is he spent most of his life not knowing he had it, was able to enjoy his childhood, grow up, have children and now grandchildren without being burdened with the knowledge. your husband was permitted to have a normal life, grow up, marry and have children without this burden. as for your children, how will a diagnosis help them? will you love them more (or less) if they have PKD? will you take better care of them? take the best care you can of them now! let them enjoy their childhood and grow up, marry and have children. how can a diagnosis of PKD hurt your children? it can have an adverse effect on their ability to get life and health insurance, may even prevent them from doing some things later in life. could prevent them from getting some jobs. your father in law and husband grew up unburdened, let your children! now the good news, quite possibly for your husband and almost definitely for your children (should they need it). there are drugs in human testing that may slow or stop the growth of cysts to the point that dialysis and transplant never become an issue. your children, unless they become ill, will not participate in this treatment until they reach maturity but your husband may very well be a candidate for Tolvaptan (or other drugs not yet in use). panic is normal but now its time to calm down and understand that PKD is not a death sentence. I hope you will get a lot more support here and we will hear from you often. |
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| | From:  pkdLin | Sent: 6/5/2008 1:09 PM |
I would tell you to read about pkd in our links section but I know that under the circumstances right now would not be a good time to try to read and understand a whole article so I will try to touch on some of the points you need to know right now!
The biggest point is not to panic! I know, it's difficult to not do that because I've been there. The biggest thing to consider is that your fil is likely about middleged and just dx. so that means that is the likely progression in your husband's family. I don't know how far a long your dil is in the course of the pkd.. or if he will ever need dialysis. PKD can be located on different genes for ADPKD and that kind of determines if one will have kidney failure early on, or have it so late in life that it won't make a difference. Some people never progress to needing dialysis because the pkd progresses so slowly. You need more info. at this point! It's hard to wait but wait you must.
Once you get more info. the docs will likely make suggestions as to what to expect in your fil's case. They will counsel your family on what to do for your particular circumstances. Given that your fil isn't even dx at all until his age range is actually a good sign and means you really shouldn't worry about your children so much.
This is my story which is pretty typical (as the nephs have told me). My father had pkd many years ago and reached esrd at the age of 41 but there was no dialysis back then. I was dx. with pkd too; they found a cyst on my one kidney when in middle twenties, after having two sons. A few years later more cysts were found and I was dx. with the pkd. . I did not know my father had pkd u ntil this time. At first panic set in but then I just found out what I had to do to stay super healthy and life went on. I'm 54 now and have been on dialysis for almost 7 yrs... My little boys are now 31 and 35. The oldest was dx. with pkd a few yrs ago and his bp and labs are being monitored. He's on bp medication.
When fil finds out what is going on you can all take a plan of action with the help and advice from the doctors. Get a good nephrologist (kidney doctor). Depending on how far along dad is in his dx. there may also be a recommendation to go to see a renal dietician.
The best thing you can do now is keep a clear head so that you can keep track of all the advice or instructions the dr. may give your fil.. Take notes if you have to and come back and let us know what is going on. We have a whole bunch of members here who love to search for info. and provide links to the really good stuff if you need it so just come and ask. Don't feel stupid aout asking for information, or for support!!! That's what we're here for because at one time or another we felt all alone and don't want anyone else to know that feeling. Good luck to you and your family. Lin. |
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| | | From: barb | Sent: 6/5/2008 9:28 PM |
Lindsay, WELCOME to the group! For more information about PKD, I highly suggest going to the site of the PKD Foundation at www.pkdcure.org. Among the information are some blogs. The site of the American Association of Kidney Patients at www.aakp.org is another good site to give information about kidneys, dialysis and transplantation in general.
Barb
-----Original Message-----
From: Lindsay g <[email protected]>
To: Polycystic Kidney disease chat & community <[email protected]>
Sent: Thu, 5 Jun 2008 7:26 am
Subject: Hi everyone
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New Message on Polycystic Kidney disease chat & community
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From: Lindsay g
Message 1 in Discussion
Hi I'm Lindsay, My Father in Law was diagnosed with PKD a few weeks back. My
Husband is currently undergoing tests as he does suffer from some of the
symptoms of PKD but was not aware it was in the family untill last week. He has
his Kidney scan tomorrow so hoping he will be clear. We have 2 children, Maks
is nearly 6 and Scarlett is 4 so they will have to be tested as well if my
Husband is found to have PKD. I'm kind of going in to panic mode at the moment
as I don't know a great deal about the condition. All I know is that there is a
50% chance that my hubby and then in turn our children could have it, and if
this is the case they will probably go on to need dialasys and or a transplant,
which all sounds pretty scary right now. I'm gonna have a look through some of
the stories on here so I can try and get a better understanding of what to
expect and read about your experiences with PKD. Nice to meet you all.
Lindsay
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Hi everyone, Thanks for all the info I've found it really helpfull. Now for the good news. My Husband has just returned from the hospital after having his Kidney scan and he has been told that there are no cysts present. It is very likely that at worse he has a Kidney infection. Obviously because my husband is clear that means that the children are also not going to be affected. I guess I just panicked because my father in law has just been diagnosed and it hals also now been confirmed that his aunt has PKD. You are correct in saying that his father is in his 50's and the only symptom he has at the moment is some Kidney pain. He has now been refered to a specialist to discuss the best course of treatment and also now both my sister in laws need to be tested. Thanks again for your replies and I will keep you updated on any news. Lindsay |
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| | | From: pkdLin | Sent: 6/7/2008 12:29 AM |
| Lindsay, That is wonderfull news for a whole lot of reasons and I'm so happy for you! A lot of time we do get bad news here but we sure do like some good news. I think we should have a site party! I almost missed your post. I had treatment to day and then the batteries in everything computer decided to pretty much quit at the same time. I'm so glad I got to come back and read the good news. Take care and give your family a nice big hug, and one from me to you. Lin. |
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Hi Lindsey, and welcome. You have found a wonderful site for info and support. Please do as much research as you can. It will help to ease some of the fears and questions you have. Liz |
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I agree with spiderwoman, do not get your children checked. If there are no obvious problems and as slow as PKD progresses it'll be worth the wait. I was refused life insurance and other things down the road. I was diagnosed while having a back problem. Good Luck |
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| | | From: keeta0 | Sent: 6/30/2008 12:29 AM |
MY FATHER HAD PKD AND IT PASSED DOWN TO MY BROTHER AND ME. MY BROTHER HAD A TRANSPLANT TWO YEARS AGO. HE'S DOING GREAT. SAYS HE FEELS LIKE A NEW PERSON. I CAN'T WAIT FOR THAT!!!!! ANY WAY WHAT I WANT TO TELL YOU IS MY CHILDREN ( 31 AND 35) DO NOT HAVE PDK AND SO FAR NEITHER DO THEIR CHILDREN ( 12 AND 16) I WISH LUCK TO BOTH OF YOU. WENDY |
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| | | From: HJC2470 | Sent: 6/30/2008 2:24 AM |
Hi Lindsay- I'm so glad your husband's scan was clear. I don't think you mentioned how old he is- so just a word of caution that until about age 30, a scan of the kidneys can't totally rule out PKD. While most PKD patients probably have cysts in their early 20s (like my Dad, my sister, and me) others don't develop them until closer to 30 (my aunt and cousin were both "clean" in their mid 20s but actually did end up having PKD w/ cysts showing up later). The general rule I believe is that at age 30 if you still don't have any cysts showing on an ultrasound you can be fairly confident that you don't have PKD. If your husband isn't yet 30, he should probably get scanned again in his early 30s just to be sure. But for now, celebrate the good news! Clean kidneys now is a good sign! :) Heidi |
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