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MALKS_ARIA's Photo MALKS_ARIA Posts: 2,405
10/28/12 2:12 A

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Welcome Nina :)

I am slow... very slow these days getting on here to check e-mail and forums.

:) I am dealing with other health issues.. so PCKD is lower on the priority list.... (although I have to keep it in mind)....

The Fibromyalgia, and the other health issues are causing some issues right now... :)

So again, welcome...

~~~~~~~~~~~~~~~~~~
aria

3 pounds at a time!! I can do it!!

Small Steps pave the way to big changes!!

No matter the obstacles, we can climb over them!


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LIFE-FAITH's Photo LIFE-FAITH Posts: 7,730
10/27/12 8:19 P

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emoticon to our team!

We do have several members with PKD on our team.

In our forums you will find many articles on nutrition and exercise, general kidney friendly health issues.

If you have any questions please feel free to ask.

JUMP right in our forums and learn to LOVE your kidneys.
Jean

Dad: BIBLE: Basic Instructions Before Leaving Earth

Leader:Loving Our Kidneys
Kidney Failure is the 8th leading cause of death in USA


"Seventy years are given to us! Some may even reach eighty.
But even the best of these years are filled with pain and trouble;soon they disappear, and we are gone."(Psalms 90:10)

You cannot change your life until you change something
that you do every day.
~John C. Maxwell~


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NMCDEE's Photo NMCDEE Posts: 618
10/27/12 12:34 P

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I too have PKD and so do a few members of my family, all females. Yes lifestyle goes a long way to preserve kidney function though the disease progresses at different rates for different people. I have cysts covering both left and right kidneys along with my liver as well. Despite this my kidney function is still at 40%. Besides eating well, watching my K, Ph, Na, taking Vit D, Ca, Mg, on BP meds and exercising thats about all one can do. I have annual ultrasounds and blood/urine rests. If I even suspect a UTI I go in right away because the worst thing that can happen is developing a kidney infection that causes further unneccessary damage and hard to treat in my case but by IV antibiotics.

My attitude is yes I need to be conscience of my choices but I'm living my life to the fullest as every day, especially a health day is a gift and I intend to enjoy

-Nina-

SW: 140lb
CW: 133lb
GW: 120lb

"You cannot control the winds of life, but you can adjust the sails"-unknown


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CLAIRE_LEFT_SP's Photo CLAIRE_LEFT_SP Posts: 2,802
8/9/12 4:34 P

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Welcome to the team, Sue! I hope we're able to help you learn those things that will help your husband manage his disease. Best wishes!

Claire
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Those who think they have no time for a healthy lifestyle will sooner or later will have to find time for illness.
SUEPERSTARS's Photo SUEPERSTARS SparkPoints: (33,554)
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8/7/12 9:00 A

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Sorry I couldn't reply earlier - it was a long weekend here and I tried to avoid my computer as much as possible!

Thank you, Aria, for all this information!

Thankfully, my husband is not overweight, and both of his kidneys are functioning perfectly right now. His father and his uncle both have this disease, so when he wasn't feeling well, they knew what to look for - they did an ultrasound and found 1 cyst on each kidney. Its still early stages, and I'm hoping to be able to prolong this as long as possible.

I guess his main symptom is high blood pressure, which he has just gone onto medication for. (All this has happened within the last month.)

He says that this is what it is and there is nothing he can do about it, at least until his kidney functioning starts to diminish at which point special diets would be beneficial. My thinking is that if there is something he can do to slow down cyst growth or the progression of the disease, then that should be the focus. But I also know that in the end, its up to him. I just want to find out as much as I can so that I can help in any way that I can.

Thanks again, Aria. This is a lot of information and a great place for me to start.

And thanks to everyone else for the warm welcome.

Sue



If I choose to not do anything differently today, tomorrow is going to be exactly the same as yesterday.

"Shoot for the moon. Even if you miss, you’ll land among the stars!" ~ Les Brown


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LIFE-FAITH's Photo LIFE-FAITH Posts: 7,730
8/4/12 8:52 A

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emoticon to our team!

Thank you Aria for sharing the information.

Sue we are a small and caring team - some of us on this team have had transplants or were a donor, the rest of us have some form of CKD (chronic kidney disease).

I hope you find encouragement and support and great info to help you and your husband learn about CKD and to love your kidneys.
Jean



Dad: BIBLE: Basic Instructions Before Leaving Earth

Leader:Loving Our Kidneys
Kidney Failure is the 8th leading cause of death in USA


"Seventy years are given to us! Some may even reach eighty.
But even the best of these years are filled with pain and trouble;soon they disappear, and we are gone."(Psalms 90:10)

You cannot change your life until you change something
that you do every day.
~John C. Maxwell~


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MALKS_ARIA's Photo MALKS_ARIA Posts: 2,405
8/2/12 1:17 P

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welcome to the Team!
I am aria, and I also have poly-Cystic Kidney Disease.
I was diagnosed at 21 with a left Nephrectomy. I have one Kidney left with a cyst on it.

The best possiblility to keep them healthy... UltraSounds as the Dr orders but in general it was recommended once a year to identify Cysts overtaking the Kidney(s) and Kidney Function Lab Tests.

For me, my vitamin d is extremely low so I take (from drs orders) 70,000 IUs a week. My Lab tests showed this.

The other issue I was made aware of is that High Protien Diets cause more cyst growth. This being said... it is a no win situation because weight loss is important (but it has to be His doing). I personally base my diet off the South Beach Diet - Modified for phosphate levels (can cause more damage.) Lots of fruits and veggies ~ but many you have to watch phosphate levels... and fish and chicken often as my protiens...

The Nephrologist told me drink a Gallon a day ~ Water, non-cafineted sodas, Tea...but most of all Water! Stay away from sports drinks as they add sodium and Phosphates.

My Blood Pressue needs to be controlled with meds... and an ACE Inhibitor is recommended for PCKD patients as it reduces somthing in the Kidney. (sorry i am not a scientest to remember what ACE stands for).. I also have to take other Meds for High Blood Pressure they recommend mine stay no higher than 125/85.. ask his nephrologist what they want it at... they should be the one rx'ing High Blood Presure meds if it needs more than just an ACE Inhibitor.

Stay away from Over the Counter Pain meds other than Tylonel and it's Generic. All NSAIDs (Non-Steroidal Anti Inflamitories... i.e. Ibprofen, alieve, asprin are excreted in our urine and can cause Issues.

Welcome to the tight rope... my PCKD took out my left Kidney first... as I said at 21. They have told me they will not do surgery until my right Kidney totally fails cuz they risk the Kidney shutting down fully when they remove cysts...

If your hubby is experiencing any back pain in the kidney region he should probably go to at least an urgent care and have tests run to verify kidney function and levels.... (i personally have back injuries but i can tell the difference in pain level most the time)...

If you and your husband have kids you will want to have them checked via ultrasound as there is a 1 in2 chance he can pass it on.. unless he has PCKD recessive then it is 1 in 4. the key ages are at Birth, 7 yrs old, 20/21 yrs old, and 40 yrs old- this is when they most often see it manifest as a congenital birth defects.

If You need more info the Kidney Foundation has a section just for us :) plus it had been a bit since i been to pkdcure it is helpful. www.pkdcure.org/

Edited by: MALKS_ARIA at: 8/3/2012 (01:54)
~~~~~~~~~~~~~~~~~~
aria

3 pounds at a time!! I can do it!!

Small Steps pave the way to big changes!!

No matter the obstacles, we can climb over them!


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SUEPERSTARS's Photo SUEPERSTARS SparkPoints: (33,554)
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Posts: 446
8/2/12 9:32 A

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Hello!

My husband was recently diagnosed with Polycystic Kidney disease, so I'm trying to find out more about it and ways that I can help him stay healthier... without nagging him, of course! lol

Any suggestions of good websites to check out, or any other sources would be greatly appreciated.

I'm glad I found this team! Thanks so much in advance!

Sue

If I choose to not do anything differently today, tomorrow is going to be exactly the same as yesterday.

"Shoot for the moon. Even if you miss, you’ll land among the stars!" ~ Les Brown


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