| Subject: Re: Daughter w/ PKD |
Author:
Beth
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Date Posted: 10:25:03 07/07/04 Wed
In reply to:
Therese
's message, "Daughter w/ PKD" on 01:56:05 07/02/04 Fri
My dad died at 46 after years of complications when I was 15 1/2. At 16, my mom sat me down and told me I had a 50% chance of having the disease and that all the doctors were able to tell her was that if I did have it, it would probably be worse (which is wrong by the way but it was a long time ago). Let's say I didn't take the news well ;)
She did offer to take me and my sister to genetic counseling but it didn't seem worth it. I wasn't quite as depressed as your daughter but I had a very fatalistic view of life, wanting to cram in as much excitement as possible, to Live!! Kids tend to be extreme in thier reactions. Your daughter is definitly not the only one.
Anyway, I was diagnosed at 29 because of a kidney infection and started researching like crazy. Fear is a great motivater :) I'm 39 now, went vegetarian to cut excess protein from my diet, don't have any high bp yet (fingers crossed) and my kidney function is about the same or maybe a little less then 10 years ago. It's a bit of a shock to be almost 40 and still here. Tell your daughter she might want to plan ahead.
PKD isn't an automatic death sentence. In fact most people with PKD die from heart problems, not kidney failure. There are things to do to help keep your kidneys working like keeping your blood pressure in the low to normal range. A study found it can keep them working up to 15 years longer than if you don't.
There's also some drugs in clinical trials that slow or stop the growth of cysts. They've tested one I know of for safety in people with normal people and I think they've gone on to the phase of testing for safety (not effectivness)in people with PKD but the results are suppose to be promising. These trials take years to complete but your kid is in the right age group to benefit from them.
Your daughter's father didn't die til he was 44 so even if she followed exactly in his footsteps, that's still 27 years of life she needs to be figuring out what to do with. The odds of her dying in the next few years are pretty low. Even is worse comes to worse, transplant drugs are much better than they were even 7 years ago but if she takes care of herself, her kidneys could stay in decent enough shape for one of the drugs in clinical trials to come out and do her some good.
It might help her to talk with a nephrologist who's very knowleable about PKD about an estimate of how long her kidneys will stay functioning, if there are any factors she can make changes to to help, what's her est. life span with/without dialysis or transplant. If she has more information to work with, maybe it will help feel less extreme.
The only other idea I had was to offer a bit of a bribe to help shake her out of her depression. Offer to pay for a class or something she's always wanted to do. Looking foward to something is one of the best ways to get over depression that I've found. Sorry to be so long winded. I hope something in all this is of help to you. Good luck to both you and your daughter!
>In April 2002, my then 17 year old was diagnosed w/
>PKD. We knew there was a chance for her to get it. I
>have always been open w/ her about it. Her father
>(deceased at 44, 7 years ago) and his mother (deceased
>at 56) were diagnosed w/in 4 years of their death.
>Asymptomatic prior to that. In my initial research on
>the web, I was shocked to read that most folks are
>diagnosed (as a result of "some" type of pain that
>brought them to ER or doctor) between the ages of
>35-50. Karla and I both thought she was having an
>appendicitis attack; but when I saw the ultrasound for
>myself that morning, I knew exactly what it was. I
>was heartbroken; she was only 17. The following weeks
>were hard--in/out of hospital, trying to accept this
>disease at such a young age, and trying to stay
>motivated to finish high school all at the same time.
>She did it though. Fast foward to now. When I came
>across this site/message board, it was comforting to
>see that it is not so all uncommon to be diagnosed w/
>adult PKD at such a young age, and the
>advice/suggestions and support is tremendous. This is
>the reason for my message. I am writing for
>advice/suggestions in helping Karla w/ the emotional
>aspect of this disease. Since her diagnosis, Karla
>has felt like there is no reason to pursue anything,
>"I'm gonna die anyway....what does it matter, etc."
>(You get the point, but she feels her 'death sentence'
>-as she puts it- is too close to pursue college or to
>have aspirations, goals) I remind her she could die
>in a car wreck tomorrow. I steer away and try to help
>her steer away from indulging in self-pity. I don't
>discount her feelings at all. I empathize with her,
>knowing the bottom line is that she is "all alone" w/
>this disease, no matter how much support and love we
>give her. We maintain a day-to-day positive attitude,
>but I can see her going thru another bout of deep
>depression, and I am running out of ideas to help her
>pull herself out of it. She does not want to see a
>therapist or support group; she stopped her
>anti-depressant about 3 months ago because she does
>not want to take a bunch of pills, she refuses to talk
>about her disease w/ family or friends, she refuses to
>learn more about it (the positive side of
>research/cure), etc. I hope I have painted a clear
>enough picture for any of you who may have some words
>of wisdom on how I may be able to help Karla get outta
>this rut and look to the future and look forward to
>the future. She knows only what to expect w/ regard to
>the hardship of this disease, which is painful. I see
>her losing her grip at times, and I worry she may
>become self-destructive. She's always been a
>confident, knows-what-she wants kinda person, and her
>loss of motivation is breaking my heart for her. What
>can I do?
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