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CBEVNOW's Photo CBEVNOW Posts: 6,307
12/4/12 10:44 P

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Ok here are my answers.
Number 1---- 3rd stage and still in 3rd stage --My GFR dropped to 26 one time and it scared me, so i got very strict with my diet and brought it up to 51.
Number 2----Yes i feel my PC dr. is knowledgeable about CKD, If he is going to prescribe a medicine for me he will say oh that's right you cant take this because of your Kidneys. My former PC, didnt have a clue about CKD.
Number3---This team has taught me a lot about this disease, and has inspired me to learn as much as i can about CKD, diet and exercise. Also as a support group it is awesome. We all need inspiration and also we need to be able to let others know how we are feeling.
Number 4----I believe a Nephrologist should explain things to you. Treat us as a person not a number. Let us know there is hope for this disease. A PC should let us know that high BP can be a sign of CKD, also how dangerous Nasaids are for people. When doing blood work, check to see what our GFR is this will let us know if we have CKD.

I fee that Diet is most important in this disease, each CKD patient has a different diet. A Neph. should give a patient more information on the diet, or where to look for diet, both is a good idea. Exercise is also important in this disease. Patients with CKD also develop Heart Disease and Dibectic, and should be made aware of this.
It is most important that we have good support from our spouse or other ones in our life.

Yes you can use my name.


Im starting to take control of my life today. I will take care of me, love my self., be good to my self, I am strong, i can do this.


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LIFE-FAITH's Photo LIFE-FAITH Posts: 7,603
12/4/12 5:24 P

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Tomorrow morning thank you to everyone who responded to my email or posted in this forum.
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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CBEVNOW's Photo CBEVNOW Posts: 6,307
12/4/12 4:46 P

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When is the deadline on this, i also want to participate.

Im starting to take control of my life today. I will take care of me, love my self., be good to my self, I am strong, i can do this.


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MALKS_ARIA's Photo MALKS_ARIA Posts: 2,403
12/3/12 9:13 A

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1.) What stage were you in when diagnosed? Now? I am not the average CKD patient. I am a Poly-Cystic Kidney Disorder Patient. I lost my first kidney at 21, with less than 5% left of my left kidney. I currently have a 2.8mm Cyst on my right kidney. Still in stage 1

2.) Do you feel your PC dr is knowledgeable about CKD? My Dr has a clue about CKD/PCKD but she is very much a dr who will "outsource" to specialists. She does do well, at making sure my meds don't affect my kidney as best as possible, and when she is not sure, she sends me to someone who she believes will know.

3.) What impact has this team had on your lifestyle? or CKD? This Team has really impacted me at being more concious of what is going on with my kidney, and my food choices. I knew a bit about it... but knowing, I will lose my kidney function at some point and it won't be something that I will be able to "control" but I can help keep it healthy until then!

4.) What is one thing you would like to change in the medical community when it comes to CKD? One thing I would like to change about the medical community as a whole is the use of suppliments! I believe they make a big difference in my life, and am glad to have them. I wish more of the medical community would choose them as the first line of "medication" and the insurance companies paid for them.

Feel free to use my name :)
aria



~~~~~~~~~~~~~~~~~~
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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WENDYJM4's Photo WENDYJM4 Posts: 17,981
12/2/12 7:32 P

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Please answer which ever questions you feel comfortable answering. I will leave this questionnaire up until Wednesday - then I will need to compile the info.

1.) What stage were you in when diagnosed? Now?
I was diagnosed in stage 2 about 28 years ago. I am now in stage 5.

2.) Do you feel your PC dr is knowledgeable about CKD?
I do research on the Net and have found some very good information. Sometimes regarding the food side of kidney disease the diffeent article do contridict eachother.

3.) What impact has this team had on your lifestyle? or CKD?
I have learnt so much more information regarding food than I ever knew before. I am now more careful in what I eat.I have stopped eating so many things that were no good for my kidneys. It has also been helpful when I have needed answers to some problem that I have had. I have been told many times in the past that I would be on dialysis soon but this has not occurred as yet. I have put this down to the care I am putting into myself now and using the knowledge that I now know. This has been learnt since I have been on this team.

4.) What is one thing you would like to change in the medical community when it comes to CKD?
This one is hard as I am living in Australia. We have no preventive action here in Australia, I would love that changed. All I ever see if the Nephrologist. You can not see the kidney dietician until after you start dialysis. This I feel is too late.

Hi Jean you can use my first name.

Wendy
South Australia

wendyjm4, Team leader for Sparkies Down Under.
www.sparkpeople.com/myspark/groups_
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LIFE-FAITH's Photo LIFE-FAITH Posts: 7,603
12/2/12 6:37 P

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I am working on a speech for one of my classes - I am working on sharing information about CKD. I will NOT reveal any names just stats. However, if you are OK with me using your spark name or first name please let me know that. Thank you.

Please answer which ever questions you feel comfortable answering. I will leave this questionnaire up until Wednesday - then I will need to compile the info.

1.) What stage were you in when diagnosed? Now?

2.) Do you feel your PC dr is knowledgeable about CKD?

3.) What impact has this team had on your lifestyle? or CKD?

4.) What is one thing you would like to change in the medical community when it comes to CKD?

Thank you.
You can add any info you feel pertinent - if you do not want to share the info here - please send me an email.
I will also email the team this info - as I want some raw data to work with.

Thank you so much!
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~


 July Minutes: 821
 
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