Living with CKD

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Good Questions


Q: Wow, that's all I can say. When you say end stage renal does this mean you will need a transplant? Is this fatal? You don't sound like you are worried about dying...? (I hope that doesn't sound flip, it is not intended to be at all) I wish you all the best.

A: ESRD is the final stage of kidney disease. It is when kidney disease reaches kidney failure and one then requires either a transplant or dialysis to continue living. Without a transplant or dialysis an ESRD patient would quickly (within a few weeks) die of toxemia. While ESRD and complications arising from kidney disease can be fatal (and people with kidney disease and ESRD have a statistically higher mortality rate than 'healthy' people) it is by no means a 'death sentence'. Most people live long, nearly-normal lives while on dialysis or after receiving a transplant.

Q: You don't sound like you are worried about dying...?

Nope. I have too much to live for! Not only that, but I've had nearly 13 years to get used to kidney disease - nearly half my life :) Basically there are a lot of diseases out there (AIDS, Cancer, MS, etc.) that are far worse than kidney disease. I actually feel lucky that I have what I do. Kidney disease is manageable and for a young person, such as myself, I have a better chance for a positive outcome.


... a new year. Where did 2003 go? Where did 2002, 2001 and 2000 go, too? The years with kidney trouble have flown past. I was diagnosed in 1991 - Wow. Has it really been that long!?! It seems like a lifetime! 2004 is going to be a tough year. I'll make the best of it - I'm trying as hard as I can to turn a negative into a positive. Maybe with my starting dialysis new opportunities will open up for me... The next appointment with my Neph is this Thursday. At the last appointment he said "dialysis by mid-Jan, Feb at the latest" so we'll see if it will be sooner than (not so) later.

The Holiday Review

The last week of holidays/vacation, regarding how I felt, went pretty well.

About Ken's Dad - 'The Doctor is In'...":

I got a few well-intended lectures from Ken's dad about the importance of eating more often than I do and I therefore managed to eat more than normal without adverse effects. Everything he said about eating made sense - he said I should eat more often, but smaller amounts, so that my body can more efficiently use the energy I feed it without overloading it with toxins at the same time. He went to medical school - I should learn to listen to him more often... not to mention that he is usually always right, anyway!! We also had some interesting discussions about medications & dialysis accesses. He works as a chemist for W.L. Gore inventing and improving medical devices and products. He is currently working on at least one Gore-Tex Vascular Graft used for dialysis patients. I don't remember specifically which one he's working on, but I found it very interesting that his work indirectly impacts my life. How cool is that? Ken's dad is my hero - no, really. I admire him so much and love talking about just about every subject. I certainly know where Ken gets his "I'm-usually-always-right" attitude (ok, well, he IS usually always right!!!)

I had a few days of feeling downright exhausted, but, considering how stressful the holidays were, I think I made out OK. I'm back to work this week and certainly missing my extra hours of sleeping-in and afternoon naps. I'm tired today and a little bit queasy... hoping my lunch will agree with me. :)



I ate a big dinner last night and it didn't give me any problems! It's a small thing to celebrate but it tasted SOOO GOOD and I don't feel weak and icky today :)

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