cross post recommended in GD My father and End Stage Renal Disease

[erinlough]

My father, 87, who has decent heart, lung, prostrate functioning suddenly has end stage renal failure with no cause. I'm here on DU, so you know I question things, but today when the urologist told me they are finding a "Mysterious Protein" in his body that they can't figure out, my mind went to the recent dog and cat food contamination.

My question is how would anyone suggest I proceed to get the answers. I am very suspicious of the lack of their ability to isolate the cause and they have run many tests. I feel he is getting excellent care and the doctors are sufficiently concerned. I need advice.



Thanks for any responses.

[mopinko]

1. i can only tell you this-

that kidneys work well enough until they are almost totally destroyed. so, symptoms do not appear until they break down completely.
:hug: is about all i can offer.

[Justitia]

2. My son has ESRD also. Caused by an auto-immune disease where proteins attack his kidneys.

Your dad really needs to see a nephrologist (kidney doctor), but I'm sure his docs are on their way to recommending that to him.

A nephrologist can do a biopsy of his kidney and make a definite diagnosis.
The nephrologist also has the ultimate authority to determine if he is actually "End Stage" by determining the true function of his kidneys.

Please keep us posted as to what a nephrologist tells you.

I am happy to answer any questions you might have in regards to my son's experience.

[erinlough]

3. Thanks for the good advice.

He has a nephrologist and the Kidney biopsy was done on Tuesday. He has zero kidney function. He had both a hemodialysis port and a peritoneal dialysis port put in today. He will be getting center based hemodialysis for two weeks and then we will be switching to nocturnal peritoneal dialysis. I live next door to him, so I will be staying with him at night until he gets used to it.

Thanks again, I may take you up on the offer of helping me with questions.

[Justitia]

4. I'd be interested in what the biopsy shows, if you care to share.

The "protein" aspect sounds like something similar to my son's case.

My son has maybe 10% function. He's been on hemodialysis (at center) for 9 months.
We start transplant evaluation in the next few weeks.

Good luck w/the peritoneal dialysis, I know many dialysis patients who say it significantly improves their quality of life.

How are your Dad's spirits? How is he handling this?

I wish you all the very best. Dialysis is difficult, both for the patient and their caregiver.
Your father is very, very lucky to have you next door and willing to help / support him.
Remember to look after yourself.

Please post again when you can.

:hug:

[erinlough]

5. There was no cancer of the Kidney but what it did show is as bad

Dad was diagnosed with a rare disease called "Wegener's granulomatosis". The disease targets the kidneys, lungs, heart, and upper respiratory system, and untreated may be fatal in a few months. The treatment is chemo and after hearing the side effects my father has decided to refuse treatment. We just lost my sister to cancer and all of us are too familiar with the toll that chemo takes on the best conditioned bodies, Dad, at 87 simply decided it wasn't how he wanted to leave.

We are going to stay with the dialysis though. We will be beginning nocturnal peritoneal dialysis in a few weeks. Right now he is having hemo at a center until the port for peritoneal dialysis heals.

As to his mental state, it is wonderful. He is asking all the right questions, and he is very practical and controlled. As to our mental state......we are coping and always trying to support his decisions all along the way. We are enthusiastic advocates of this man who taught us everything in life; compassion, love, responsibility, and now at his end time is teaching us about that too.

Thanks for your concern.

[Justitia]

7. I'm sorry to hear of the diagnosis, all my best to you & your family.

And I'm very sorry about the recent loss of your sister, this must be a really emotional time for all of you. :hug:

I'm very glad to hear that your dad is feeling well mentally and is so capable in dealing with his diagnosis, that is a great gift.

Warpy hit the nail on the head about the primary issue with PD - infection / sterile environment. It's the only thing you really have to watch out for. It is exactly why my son was not a good candidate - he's a slob! Of course, your dad is a grown, responsible adult, so not as big an issue. I told my son's doctor that I thought he'd have peritonitis by the end of the first week - ugh! We are still working on washing your hands very frequently and wiping down your kitchen counters daily, so you can imagine my concern - ha.

When we were first evaluating PD, someone forwarded me this website for PD accessories:

http://www.kidneystuff.com/index2.html

They mentioned the genia clip was an ingenious little device for keeping the draining tube in place. Just thought I'd mention it, in case it's helpful.

And again, please remember to try to get some rest yourself. It's hard to be a caregiver and you have to stop and take care of yourself to be the best help for your dad. It is easy to run yourself into the ground sometimes, I know.

I wish you the very best.

[erinlough]

8. Not to wallow in pity, but.....

My mom also died in April from a massive stroke.....We are very numb. Thanks for your concern and the link.

[Warpy]

6. Peritoneal dialysis is easier on both the patient and the caregiver

because the patient doesn't have to spend hours a day, three days a week, in a chair hooked to a machine. There are some techniques that need to be learned, especially how to maintain sterility. Infection is the most common complication of peritoneal dialysis so good technique is a must.

He is very lucky it can all be done at night. One of the problems I've seen with patients on home PD is that it's a little confining, that the bags have to be switched every couple of hours and that means trips are limited.