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(1 recommendation so far) Message 1 of 6 in Discussion 
From: MSN Nicknamedelatoka  (Original Message)Sent: 6/19/2007 2:38 PM
Hi,
 

My name is Kim and I have PKD, I have 2 children, Joshua 19 and Amber 7.  I found out I had PKD when my mom got sick and I was tested because I wanted to give her one of my kidneys, they informed me that I had PKD and told me to have all my family members checked. My son tested positive, my daughter tested negative and my brother and sister would not get checked, they said they didn’t want to know. 12 years later my brother is having complication and he found out that he has PKD. My sister still has not been screened but I believe that she has it. My mother passed away at the age of 56 in 2004, my aunt passed away in her 30's and my grandpa passed away when he turned 50.<o:p></o:p>

 <o:p></o:p>

I have been having many complications and am vary scarred, so far they have diagnosed me with high BP, diverticulitis and I am being tested today for diabetes. My son has had complication as well; he had frequent blood in his urine and has a lot of side and back pain.

<o:p> </o:p>

I have been married for going on 9 years; I think that my husband is in denial. Anyone have any advice?<o:p></o:p>



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 Message 2 of 6 in Discussion 
From: MSN NicknamepkdLinSent: 6/19/2007 10:26 PM
Hi, You asked for advice so here goes: If overweight lose it, give your diet and habits a good overhaul eliminating alcohol, tobacco, sodium ect. from your life, speak to your doc. about treating the hypertension and get a bp cuff to monitor it at home.
I know how difficult it all is because I've been dealing with it for many years. My father had pkd, and mom was diabetic among other health problems, so I knew I had to be mindfull of so many things. The bs was mod. high several years ago and I took measures to lower it. My mom went through hell with diabetes and it was emotionally painfull for me to watch. She was warned years prior to take measures to control her bs but she figured she had insulin so that was all that needed to be done; unfortunately she didn't believe she had any control. I hope you have success in dealing with the pkd and diabetes. My oldest son was dx. few years back with pkd also and is now on medication for bp even though it's not yet high. Good luck and welcome. Lin.

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 Message 3 of 6 in Discussion 
From: MSN Nicknamecuayi220Sent: 7/19/2007 9:09 PM
hi I want to thanks all for this support group I´m cuayi. I allways read the messages when i went to bed, sometimes i have like 80 messages, but very happy to read them all. and to know that im not alone in pkd. I went back from the lab tests, and my creatinine is 2.5 and bun 92% im scared about this, but my lab test before was like this:
creatinine 2.7 bun 60% two month later with diet full of cranberry and limon juice my creatini was 1.8 and bun 49%. but now with no diet im back with 2.5 and 92% .
I dont know how long can i last with this after a transplant, do I have a little more time? no pain, I really feel well.
Also I want to know is there any group that speak spanish? sorry for my english
 
by
 
cuayi


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 Message 4 of 6 in Discussion 
From: BridgetSent: 7/19/2007 10:33 PM
Hi there and welcome to our pkd support family. First off I need for you to know that you are not alone. We are all here for you!! Always...!!!
I have high blood pressure and am a diabetic type2 and pkd along with other health issues.
Inspite of it all I am here to tell you it IS "doable". Is it scary and frustrating? Yes, very much so. Overwhelming to say the least, but we are here to help guide you along this learning process.
 
Take a deep breath and get focused on learning how to be your best health advocate.
A good place to start is understanding any disease. Knowledge is power!
Blood pressure.........sodium. What to learn?  Reading labels for sodium content and learning where it can be found. You will be amazed to see where it can be found.
ALL canned veggies.....canned foods of any sort.
With Diabetes........... it is a good idea to elimenate all white foods. Especially pastas,rice and white breads.
There is a great support group on msn for diabetes. Let me know and I will give you the address ok.
Stress.....is a big factor for high bp and diabetes.
When my Nephrologist and Endocrologist suggested I try to "de-stress" I was histerical with laughter. At the time our 3 daughters were young teens and raising cane in many ways lol. So stress was a daily part of our lives around here. Through everyone here I learned many new techniques on how to deal with everything. Although it took time to learn........." KNOWLEDGE IS POWER"......it worked.
One good idea is get a note pad and pen and write down ALL of your questions for us and your doctors as well. It will really help a great deal.
Please stay in touch and talk with us. We do really care and are here for you anytime.
Big hugs, Bridget*
Go for frozen or fresh when possible. Frozen can have a small amount but it is much better than canned any day.
Prepackaged/ frozen meals are absolutely stupid with sodium!
BUT not all............there again READ the serving size and sodium content. Snack foods try to slowly introduce baked chips and low sodium products to your healthy eating habits.
NEVER try to make all of these changes in 1 day!!  Success takes time, slowly learn about choices your making for your health.
Eating healthy and getting exercise will take wieght off faster than dieting. PLEASE do NOT diet.
You are making a decision to change your eating habits not dieting ok.
Smoking, I have been a smoker for years. And have had intermitent success at stopping. When I am not smoking my bp is fabulous and I feel better. Much more energy and even look younger! Gotta love that perk!
Eating lean meats is also a good idea. I eat no pork (sodium packed) ! But that is just me ok. I am in no way suggesting you don't eat pork.
Exercise can be as simple as a walk with the dog or just walking with the family a couple of blocks. Or just one block if that is all you can do. Try to add a few minutes each day of new exercise.
 

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 Message 5 of 6 in Discussion 
From: BridgetSent: 7/19/2007 10:36 PM
It is me again. I am not sure why but my post is a bit out of sorts for some reason.
When I said , take care and stay in touch , it should have been at the bottom of the post and not in the middle.
Not sure why that happend , but it did.
MSN gremlins at work again.............grrrrrrrrrrrrrrrrrrrrrrrrrrrrrr

Reply
 Message 6 of 6 in Discussion 
From: palominoSent: 7/20/2007 1:26 PM
 
    Dear Cuayi-
 
            ?Que tal?  Y gracias para su carta.  (How's it going? And thank you for your letter.) H I speak a little bit of spanish. I'd rather not write on the community board in spanish, however because it would maybe not be fair to post something that not everyone could read. But still of course- stay with the group- there are a lot of awesome, caring and supportive people here. 
 
            And if you do want to talk about PKD etc. in spanish, please feel free to email me directly ([email protected]
 
            Welcome to the group, Cuayi!
 
                -jeanne p.




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