Hey

I’m new here, I have kidney disease and Ive been on dialysis for about 5 years, I just came here to talk to people with the same problem!

[KidneyCoach NKF Ambassador]

Hi. Happy to chat with you. I had CKD 40 years from PKD. Dialysis almost 18 years. Blessings

[Sephora in reply to KidneyCoach]

Hi Kidney Coach, My mother was on dialysis for 23 years. Now that I have started dialysis (5 months ago) I question how she did it. How do you keep the right attitude? Does it get better over time? To me this seems like torture. Does anyone else feel this way? Or is it my unique disturbed personality?

[KidneyCoach NKF Ambassador in reply to Sephora]

Dialysis life is tough. You have to grieve for the life you once lived and be accepting of your new life and all the changes involved. I remind dialysis patients its okay to go through the grieving process again through the years. I find I cycle through it every 1-3 years. After a while it becomes a new normal with routines that seem as simple as before beginning dialysis. People ask me how I control my diet etc and truth is its become such a routine I rarely need to think about this much potassium or that much phosphorus. I've been doing this so long that it is automatic response for me.

I encourage you to be a great self-health advocate. Empower yourself with education and research about your kidneys and overall health. Make yourself number 1 priority and learn to self-manage your health WELL. Be intuitive to your body and the symptoms and signs it gives you. Respond accordingly. If you are managing well your own health, then you are in control and everyone else is merely support personnel.

Have you checked out kidneyschool.org ? This is my go to for all new patients. It has a wealth of information.

Any more questions, or chatting, let me know. Blessings

[Sephora in reply to KidneyCoach]

I have been to Kidney School at least twice and others. Mostly to try and slow the progression. I think that I did to a degree but it is anecdotal and therefore inconclusive. As with this disease it has been prevalent throughout my family. What is your history ? At what age did your kidneys fail? If you don't mind sharing.

[KidneyCoach NKF Ambassador in reply to Sephora]

I started having kidney infections, high blood pressure at age 21. Mine is from Polycystic Kidney Disease. My father was on dialysis at home in the late 60's before clinics. I started dialysis at 43. Been doing dialysis for almost 18 years. Never a transplant. Blessings

[Sephora in reply to KidneyCoach]

As with PKD the men in our family had their kidneys fail younger. With the exception of my brother who died at 66 from a brain tumor. He still had a 20 GFR. I find this all very interesting. Everyone's story is different but it all gets us Here. Thanks for your time.

[Hidden in reply to Sephora]

Well, I didn’t think I would get so much attention, but I’m the only person in my family with kidney disease, my 1 kidney started failing a few months after I was born, at age 9 it failed completely, I had to start dialysis then, I had surgery to get a catheter until I could get a kidney transplant, from then it’s been about 6 years, also for me to cope with not eating my favorite foods and not running and medicine and stuff I thought as much positive and didn’t bother with the emotions I was feeling, I always said I was fine and ok, never letting the negativity of my brain get to me.

[Sephora in reply to Hidden]

Am I to understand that you are only around 15?

[Hidden in reply to Sephora]

Yes you are right

How old are you?if you don’t mind me asking

[Sephora in reply to Hidden]

Of course not. I am an ole lady of 66. Are you looking to have a transplant? Or hoping for the artificial kidney which is now in trials?

[Hidden in reply to Sephora]

Yes I am hoping for a kidney transplant

[Jayhawker in reply to Sephora]

Do you have current information on the artificial kidney trials?

Jayhawker

[KidneyCoach NKF Ambassador in reply to Hidden]

So you're 15 and have been on dialysis for 6 years. Children/youth get priority for transplant listing. Are you listed? In the U.S.? Is there a reason you've not yet received a kidney transplant? I know some areas have an extremely long wait time but children/youth get precedence and rarely wait more than 2 years or so. Blessings

[Hidden in reply to KidneyCoach]

Well I just got on the waiting list a few days ago, I’m really excited!

[KidneyCoach NKF Ambassador in reply to Hidden]

Don't feel pushed to answer, but is there a reason you weren't listed or didn't get a transplant until now? Were your parents not supportive of you getting a transplant? Other health issues? Blessings and CONGRATS on getting listed.

[Hidden in reply to KidneyCoach]

No, my parents are great and very supportive, but it’s because of a personal reason so I can’t tell you, sorry

[KidneyCoach NKF Ambassador in reply to Hidden]

I completely understand. I was listed for nearly 10 years never got a transplant. I've been off list now for 6 years and okay. I may just may list again but content at the moment. Best of luck and wishes and Blessings

[Hidden in reply to KidneyCoach]

Thanks!

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Thanks

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Sorry no

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Sorry no

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Thanks