Hi Kidney Patients!

[EndStageRenal]

I'm a 56 year-old man arrived at stage 5 due to Polycystic Kidney Disease.

I was in denial as my GFR dropped over the years. In hindsight I wish I'd done more to preserve my remaining kidney function--not sure if it would have helped with PKD but I'll always wonder.

But I have a pretty good life even with hemodialysis for 3.5 hours 3 days a week. I still work as a Controller for an Ag manufacturing company and my boss has been teriffic in understanding my need to be at dialysis during the week. I travel, with Davita arranging my dialysis at different clinics when necessary. I'm working with an in-state hospital system as a transplant candidate but there are issues with immuno-suppression that complicate my decision to have a transplant. I've tried peritoneal dialysis but it did not work for me--either physically or emotionally. I like being able to leave my disease at the dialysis clinic and live a relatively normal life otherwise.

[Sirrahbed]

Hi! I am not as far along, having GFR of 21 but do sometimes think ahead to dialysis and think I might prefer at home peritoneal. Hopefully this is down the road though. I like your attitude of leaving your disease at the dialysis clinic

[cmaxwell78 NKF Ambassador]

I really appreciate you sharing your experiences, and your positive outlook. It's great to hear of employers that get it and work to make this time as easy as possible on you! I also have PKD and have felt the denial over the years as i have watched my father manage his PKD. Best to you on your journey and thanks again for being willing to share.

[Zazzel]

Hi, Welcome. thanks for sharing!

[Cinnamondog]

Thanks for sharing

[Dixidude39]

Hey, Endstage ... thanks for your uplifting story. I'm CKD4 with an eGFR of 27-29 due to removal of my right kidney in 2016 due to cancer linked directly to my bladder cancer (surgical removal in 2015). I live with the knowledge that I am at risk for developing TCC of my left kidney. Unlike RCC (the most common form of kidney cancer), the only remedy would be surgical removal. I've visited a DaVita dialysis center and taken their Kidney Smart course. We drive to and from Texas from Virginia every year. It sounds like DaVita would assist in setting up one visit going and returning (it's a 1,300 mile, two night trip). Once in Texas, there's a DaVita center just down the street. I'll be 78 in a few days, and I agree, home dialysis would not be an option for me. Typically, do you read, watch TV, listen to music, snooze OR ? Kudos for your company, and keep up the good work!

[EndStageRenal in reply to Dixidude39]

Dixiedude--if you reach the dialysis stage and do your normal dialysis with Davita they have clinics just about everywhere. Your home clinic can easily arrange for your dialysis in Virginia, Texas or about any city in between.

During my hemodialysis I normally am on my phone playing games, answering work emails, reading news stories, or watching the TV that is attached to each dialysis station. The time actually goes pretty quickly once you get used to it.

[Dixidude39 in reply to EndStageRenal]

Thanks, ESR. There is a DaVita center 1/4 miles from the condo we usually rent in Houston. The weather is more temperate than Virginia, but our main reason for returning year-after-year is many friends at Houston's Second Baptist Church. I am scheduled for a loopogram of my left ureter/kidney on Dec. 4., approx. 18 months post R kidney nephrectomy. If cancer is diagnosed, we'll forgo our 2018 trip, as I'm sure it takes time to adjust to hemodialysis. Do all on dialysis get a fistula? Is a needle insertion prior to each treatment required? I've heard that an alternative is a permanent port. Would appreciate your insights.

[andibeth in reply to Dixidude39]

Hey Dixidude--are you wintering in TX? We would love to have you in Florida.

[Dustypye]

I'm glad you're boss is understanding. My boss and co-workers have made absolutely no attempt to understand or compensate for my illness. I've made no secret that I'm sick either.

[EndStageRenal in reply to Dustypye]

Dustype--a couple things:

I'm sorry about your work situiation--sounds pretty mean and insensitive. One thing I can tell you is that once you reach dialysis/transplant status it is against the law for you to be removed from your employer's medical plan for 30 months I believe. Davita told me this. I believe this has to do with with Medicare becoming your primary insurer 30 months after eligibility. Please check into this with Davita--they know the laws for kidney patients well.

Second--the reason you are so tired all the time is probably that you are becoming quite anemic if you are Stage 4. Tiredness, shortness of breath, and confusion were all symptoms I experienced as I eventually was hospitalized when my red count cratered at about 6.5. Are your doctors watching your hemoglobin?

To be honest I sympathize with those of you who dwell at Stage 4 trying to maintain enough function to stay off dialysis. I feel much better now than I did at that stage, which was a relative few months compared to many.

[andibeth]

I am a lady Stage 4 PKD patient. My GFR has been as low as 19 and back to 23 and now 20. I have been hanging around like this for a bit over a year. I went to a nutritionist who put me on a low calorie (1100) diet. You cannot eat too much of a bad thing if you are eating 1100 calories . I believe I have maintained my numbers due to this diet. You will have people tell you to take huge amounts of certain vitamins. These can be toxic to PKD patients. I never believed nutrition could help this disease--other than limiting what ever my nephrologist mentioned each month, but I was wrong. I wish I had understood more sooner. I sure appreciate your attitude and I hope to have the same one as I approach dialysis.. Good luck to everyone--and hold your diet in check.