Intro to bobc4764

[bobc4764]

Hi Everyone,

My name is Bob Cuckler and I'm brand new to the I Hate Dialysis forum.  Thanks for letting me participate in the discussions.

In the interest of full disclosure, I should point out that I'm not actually a dialysis patient.  I am a caregiver to my 91-year old mom (Jean), who started peritoneal dialysis in November of 2017.  Though I'm not the patient I believe I have substantial grounds to hate dialysis, which I'll explain below.  I hope that the administrators will allow me to remain a member of the forum; I do think I have a compelling story to tell.

Before I was a dialysis caregiver I worked in the tech industry as an interim manager and as a strategy/marketing consultant.  When my mom went on dialysis I was working to launch a tech startup that would serve the agriculture and hospitality industries.  All that is on hold now as my mom's situation has rendered me unable to travel - or even focus on my work - for the time being.

I'm from the Seattle, WA area but I'm currently staying with my mom in Yuma, AZ, where she and my dad retired to in 2002.  My dad passed away in 2010.  Our being in Yuma is relevant to our dialysis story.

The key point of our dialysis situation is that my mom was (very) inadequately identified and improperly selected as a candidate for peritoneal dialysis.  As it turns out, she pretty much can't do it - at all.  For example, mom experienced a compression fracture of her spine while attempting to complete the training for PD; specifically the fracture occurred while she was trying to carry a 3 liter dialysate bag.  As a result, she may never be able to play golf again (even at 91 golf was mom's favorite pastime).

With all that, the burden of conducting my mom's dialysis treatment has fallen to me.  This has had a significant and negative impact on my personal life and on my business.  My preliminary estimate of the cost to my business: $2.5 million - but that's pending an NPV (net present value) analysis.  Of course, we haven't ruled out a civil lawsuit against the nephrologist and the company who botched my mom's evaluation for PD.

I'll write in more detail about our situation in future posts, but that, in a nutshell, is why I became interested in this forum.  I look forward to learning about the experiences of other PD and hemodialysis patients and caregivers as I and my mom struggle to navigate this new territory.  Thanks again for letting me participate.

Bob

bobc4764

[Thesunwillshinetomorrow]

    welcome.














Fixed smiley mod Cas

[Charlie B53]

Hi Bob!

Welcome to our IHD 'Family'.  We have a number of Caregiver here so don't even think you are not welcome to our group.  Your input is just as valid as anyone else's.

I am more concerned with Mom's compression fracture.  I was on PD for my first 3 1/2 years and I am surprised that your Mother was injured lifting/carrying a 3 liter bag.


I have cracked a vertebra in my low back lifting at work.  I very well know the pain and the continuing lifelong limitations from all the muscle damage that also occurred.

I also know PD can be a wonderful method of treatment for many people.  You may have a very tough case.  Good Luck with that.

So Is Mom now on Hemo or are you helping her with PD?

I hope to read more from you but as with any pending lawsuit, be very careful what you post on-line, even Facebook, as it can pop up in court and be used against you.  Stay careful.

Take Care,

Charlie B53

[kickingandscreaming]

 .  I am pushing 78 and I do PD.  I'm sorry your mom has had such troubles with PD.  I have found it to be the only form of dialysis that i could tolerate.  Every day I have to carry 2- 6 liter bags, 1-3-liter and 1- 2- liter bags  just to set up my PD for the night.  It's a huge drudgery.  I'm younger than your mom and maybe stronger, but recently I injured my back and carrying the bags was very difficult.  it's better now, but still a drudgery.  Perhaps your mom should go to in-center Hemo.  I like almost nothing about in-center Hemo, but it is easier on the back.  I hope you find some resolution. And it would free you up some.  It's also better because your house isn't overrun with boxes of supplies (a PITA)

[Xplantdad]

Hi Bob and welcome. I was a caregiver for my daughter-and we did home hemo on NXStage. Ask away, there are tons of good folk on here with lots of knowledge!!

[cassandra]

Welcome to the site Bob


 


Take care, Cas

[Rerun]

Hello, welcome to our site.  Lots of caregivers on this site.  I live in Spokane.  A  meager 400 miles east.

I also worked for USDA for 20 years but had to retire because my transplant failed and I just couldn't do both work and dialysis. 

I have a friend whose 85 year old mother lives with her and Mom is healthy.  Still drives my friend nuts! 

Hang in there. 

WELCOME, Rerun - Admin.   

[Paul]

 
Welcome Bob. As several people have mentioned, care givers are as welcome as care needers. You will fit in fine here.

[tinajones]

Hi, Bob! Welcome to our community!