What is your one biggest concern?

[MooseMom]

I figure we pre-dialysis IHD people know quite a bit about dialysis by now.  When you imagine the road ahead once dialysis becomes a fact of life, what is your one biggest concern?  What one thing scares you the most?

[Jean]

The thought that I will not be able to endure dialysis. That scares me silly.

[paul.karen]

Dying and leaving Karen here all alone.

[Deanne]

Potential loss of income and independence. As a single homeowner, I need to stay employed and I need to be able to take care of myself. I know -- that's two, but they kind of go together in my mind.

[MooseMom]

Potential loss of income and independence. As a single homeowner, I need to stay employed and I need to be able to take care of myself. I know -- that's two, but they kind of go together in my mind.

I think about you a lot...you have a lot on your plate.  This must be very frightening for you...it's all so unpredictable.

[Deanne]

Thanks MooseMom! I have moments of worry, and I dread, dread, dread telling my family I'm going on the list. I've done what I can to make sure I'm prepared, but I don't know how to prepare for every unknown thing that could come up. I'm trying to stay relatively fit & healthy. I have a job that will allow working from home if I need to. I have long-term care insurance and at least a couple of friends and neighbors who I think will help if I need it. Watching a neighbor recover from knee surgery makes me see some of the reality. She's also single / lives alone and it really only took a couple of days for her needs to wear on people (friends / neighbors) around her.

[MooseMom]

These are concerns that your transplant center's social worker should help you deal with...this is their raison d'etre.  They are supposed to help you create a support network.  You can't plan for every possible little thing, but the basics are transport, safety at home and food!

May I ask why you dread telling your family you're going on the list?  Is there anything we can do to help?

[Deanne]

I'm probably just an odd duck. I hate (with a passion) when people ask about my health, especially my family. It feels like I'm being grilled. To me, it's none of their business. I grew up in a family where questions wasn't welcomed (children do as their told and don't ask questions) and I view their questioning me as a horrible invasion of privacy. I'd rather have a kidney transplant than tell my parents about it! If I thought it was possible, I'd go on the list, get a transplant and never mention it to them. As soon as I bring it up, it's giving them "permission" to ask me every frickin' week how I'm doing. I'll likely blow a gasket.

[MooseMom]

Well, that's fair enough.

[cariad]

I'm probably just an odd duck. I hate (with a passion) when people ask about my health, especially my family. It feels like I'm being grilled. To me, it's none of their business. I grew up in a family where questions wasn't welcomed (children do as their told and don't ask questions) and I view their questioning me as a horrible invasion of privacy. I'd rather have a kidney transplant than tell my parents about it! If I thought it was possible, I'd go on the list, get a transplant and never mention it to them. As soon as I bring it up, it's giving them "permission" to ask me every frickin' week how I'm doing. I'll likely blow a gasket.

Deanne, I was the exact same way. It feels creepy to me to have my parents ask me about my health. I would never give them an in-depth answer. My parents were always so secretive about everything when I was growing up. They had this image in mind of how they wanted to be perceived, and did everything within their power to maintain that image in spite of increasingly intrusive reality.

I did go on the list and get a transplant without them ever knowing, although it was a live donor transplant so I was never waiting on edge for a surprise phone call. One of the nurses asked very bluntly after the operation "Where are your parents?" to which I answered "In Santa Barbara." She did not press any further. Eventually, they did ride into town, but they waited to be invited (our support person became overwhelmed and needed help). We had been estranged for years, and I still don't exactly feel close to them, and my health is private, private, private. I called a co-worker recently and she and my father happen to be best friends. I told her I had an emergency appointment because of a mass I found in my neck - I was very scared. She obviously did not understand the family dynamic, because she assumed my father already knew and rang him up. I was mortified. Will not be making that mistake again....

All this to say, I think I understand how you feel. Good luck.

[Bruno]

My greatest concern is not living the best life I can with the gift dialysis has given me. I feel healthy most of the time and much much better than I did. It's odd but only yesterday I sat down and thought about what I wanted, not out of dialysis, but the time it has given me. They are aren't grandiose or ambitious, but rather simple really:
Family: my wife, children and grandchildren
Writing: my diary, IHD, family history
Community: Meals on Wheels, teaching at our computer club

[MooseMom]

I think my biggest concern is that all of the investment of time and effort I've put into preparing myself will turn out to be entirely irrelevant, that my plans for doing D on NxStage, thus giving my body it's best chance by doing D slower and longer, will somehow be upended and I will end up stuck in clinic getting only adequate dialysis.  I think this is what happened to my mom.  There was talk of her doing nocturnal, and I encouraged that, but the head of her clinic told her "no"; I never found out why.  I think the classis 3xweek schedule contributed to her congestive heart failure.  The last year of her life, they had trouble getting off all the fluid.  She was only 5' 1" and weighed about 90 lbs, but she carried a lot of fluid in her legs that they just couldn't get rid of.  She'd have fluid seeping from the skin on her shins.  I'm afraid that will happen to me.  I saw the ugly side of dialysis through her.

[rsudock]

I think my biggest concern is that all of the investment of time and effort I've put into preparing myself will turn out to be entirely irrelevant, that my plans for doing D on NxStage, thus giving my body it's best chance by doing D slower and longer, will somehow be upended and I will end up stuck in clinic getting only adequate dialysis.  I think this is what happened to my mom.  There was talk of her doing nocturnal, and I encouraged that, but the head of her clinic told her "no"; I never found out why.  I think the classis 3xweek schedule contributed to her congestive heart failure.  The last year of her life, they had trouble getting off all the fluid.  She was only 5' 1" and weighed about 90 lbs, but she carried a lot of fluid in her legs that they just couldn't get rid of.  She'd have fluid seeping from the skin on her shins.  I'm afraid that will happen to me.  I saw the ugly side of dialysis through her.

I am sorry you had to see that MM. Even with all the problems my ma and I have I wouldn't want to see her suffer.