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carp05 
not much to write at this point.
our 20 years old daughter has pkd out of the blue. no family history. cant find a dr that we really like. keep getting conflicting details about the disease from a few different doctors.
i know its not going to go away, but i would love to know how to slow it down!
daughter is in college and is always stressed out. its difficult to help her when she is there. although she needs to learn everything she can abouot pkd.
hopefully this summer she will start reading more about it. she was diagnosed right during fall exams and her bp was horrible due to the stress of exams and this horrible news and diffent dr visits and tests.
our 20 years old daughter has pkd out of the blue. no family history. cant find a dr that we really like. keep getting conflicting details about the disease from a few different doctors.
i know its not going to go away, but i would love to know how to slow it down!
daughter is in college and is always stressed out. its difficult to help her when she is there. although she needs to learn everything she can abouot pkd.
hopefully this summer she will start reading more about it. she was diagnosed right during fall exams and her bp was horrible due to the stress of exams and this horrible news and diffent dr visits and tests.
Comments
Well my 1st advice to you is to find a really good Nephrologist(kidney specialist) i went thru 2 before finding the one i really liked She is like part of my family Very loving and caring and always there for me wether its in the middle of the night or anytime and i think that is super important... Support really helps too.. I have known about mine since i was 24 but started having really bad pain at 19 years old which noone could figure it out I have learned that regular doctors just dont have the knowledge about PKD like the specialist do.. I hav e had a really hard time excepting that i have this and just dealing with the pain and not being able to sleep Makes you very Emotional.. Please have your daughter join here it will give her some comfort in meeting others that are dealing with the daily and life struggles that come with disease.. Im not even sure if any of my family has this disease or not So far im the only one Good Luck and Please write back... Tell you Daughter that we are all here 4 her :)
celineD
I'm really sorry about what your daughter is going through. They caught mine 25 years ago, I'm on the transplant list with a 5 year weight. You need to be reffered to a Nephrologist and she can do that either where you are or where college is. She needs to be monitored. Once she gets a Nephrologist then she will get the support she needs to get when she is away from you. One thing I can tell you. PKD does not do well with stress. PKD has no cure. What they will do is watch her. She will have ultra sounds to keep track of the growth and the spread of the PKD. They will also keep track of her kidney function and then once it gets below 15% that's when they will recommend dialysis.Even if she gets to that point,you can do both types of dialysis at home now and she will not have to miss college at all she can do it while she is sleeping. It took me 25 years to get to stage 5 kidney failure. So even if she has PKD it may take her years to get to my point,depending on how long she has had PKD before they found it? My advice is to get her on the transplant list now if you can and that way she won't be living my nightmare of waiting for a kidney and doing dialysis. Or find a living donor. Then she will get a transplant sooner and she should be fine. I'm praying for you Please write me back would love to hear from you. Your daughter will be fine after she gets over the shock and the fear.
Patti44