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| | | From: MoonPie1077 (Original Message) | Sent: 11/16/2008 6:34 PM |
Hello all,
I've been lurking in the shadows for a couple of months now... I dont think i could explain exactly why i havent piped up... maybe i just wanted to get a feel for you all first... I hope that doesnt offend anyone.
Well, my name is Sara, I'm almost 35 and was officially diagnosed with PKD when I was twenty. Although, my internist at the time said there was evidence of it on the ultrasound taken when i was 16.
There is a long history of PKD in my family, my mother's side. My maternal grandfather had it, in fact was on of the first to use a home dialysis machine (years and years ago), of his seven children, 6 have developed it, 2 have passed on, one of them being my mother. I have 2 sisters both also with PKD. I, by far, have the most advanced case. It doesnt seem to affect my sisters much.
I'm married, have 2 kids, 18 yo and 3 yo.
Wow... i certainly have rambled. I apologize.
I guess I finally spoke up because lately I have felt the need to have someone to relate to about my disease. Some one to talk to about my fears and such... My family is supportive... but I often feel i dont want to burden them with an my occasional "whiny moments".
Scarily enough.. i havent been to the doctor in years about my PKD... honestly.. i am terrified... The last i knew, about 5 years ago, my kidney function was at 50%.. I cried for a week.
I know what this disease has in store for me... I watched and helped my mother through dialysis, transplant, rejection and more dialysis.... And sometimes the fear and anger over this illness is more than I can handle. I miss my mom terribly... and everyday i have more questions that i wish i could ask her.
Well.. thats my story.. or part of it anyway. This seems like such a great place to connect with ppl who know my pain! :)
Sara. |
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normally I would welcome you first and tell you what a great support group this is - but - when you said you haven't been to a doctor in years I think it is more important to tell you to get to a doctor and have bloodwork. you can be in denial all you want, just make sure you are doing the best to care for yourself, that you know what your state of health is, that you are eating healthy, low sodium, drinking lots of water, doing all you can to remain in good health. denial is great, it keeps us from getting nuts about having PKD, as long as we do all the good things and avoid the bad, smoking, drinking to excess, recreational drugs and even aspirin and other NSAIDs. ok, now that thats out of the way, welcome to a great support group. |
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Hello Sara, and welcome! No need to apologize for lurking or for rambling on. The important thing to know is that you have come to the best support group for PKD that there is. PKD can be scary, but not going to the doctor to keep an eye on your PKD can be the worst thing you could do for yourself. The best way to combat your fear is to see a doctor and arm yourself with knowledge about where you are in the progression of the disease. Knowing where you stand will enable you to know what the next step is that you need to take to manage your PKD. Ignorance is not bliss where PKD is concerned. Please remember that PKD affects each person differently. Even those in the same family. It is not a definate death sentence. I'm sorry for what your mom went through and how it affected you. It does not necessarily mean that you will go through the same thing. Medical strides are being made everyday in the battle against PKD. You must remain hopeful. That hope will go along way towards your ability to manage your disease. You have PKD. It does NOT have you! See your doctor, and take any meds prescribed for you and be ever faithful about that. Eat healthily, drink alcohol only in moderation, watch your salt intake, don't smoke, and be sure to drink lots of water every day. Also, don't hesitate to come here as often as you wish. You will find a wealth of support here and tons of hope! We're so glad you found us! Maggie |
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Hi Sara,
Welcome to the group. I relate to your story a lot. I was diagnosed young and lived in denial of the disease up into my 30's. I finally had to take notice when my BP was out of control. I watched my father go through failure, dialysis and transplant when he was 42. The whole experience was scary.
I've come to realize that in being proactive about my care, I don't have to go down the same path that my father did. I can have my transplant before I go into failure, I can avoid dialysis, and hopefully have a quicker recovery than he did. He was out of work over a year due to complications and infection.
I hope that you will get yourself into a GOOD neph who is experienced in PKD. Get your labs done at least every six months so you do know where your function is and be proactive in your care.
Welcome aboard!
Pauline |
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