Secret kidney failure

[mtaylorbrown]

Folks

     I was asked within the intro forum why I keep my failing kidneys and new fistula a secret from my partners and clients. I'm a security consultant, and for now, I have to depend on the income I get from projects I work on it the Bay Area in CA. That is a weekly commute from the Portland, OR area every week. I get to work from my home office on Fridays.

     I've made up a false reason for my fistula (left wrist). My work is based on contracts that vary in length from 3 mo to 1 yr. It is my belief that my associates, which develop new contracts for me, and the clients would be worried about starting a new contract with me. It is very difficult to get a qualified replacement, especially after a project is under way. It would be nice to have more candidates for donations, but mostly these folks are high-tention money makers. There isn't a lot of giving going on unless there is a tax benefit. There's an idea.

     I'm self employed, but it would be different if I had benefits as an employee for a company. They don't pay very well in the Portland metro area.

     In preparation for possible long-term hemo, we are scaling down our living style. We are selling our home in Lake Oswego and moving to Tigard or Beaverton where it is more affordable. My Air Force pension is pretty small as they gave me a medical retirement at the 13 year mark. At least I got a pension, some folks just get booted. After all, it is not like PKD is active duty related. We are planning for the worst, or at least I am. I want to get to where we can live off just my wife's income and my retirement. If I can work; great. If I get a kidney, fantastic. At least I'll be ready.

     Now to get the will and living will taken care of...

Regards,
Matthew

[Ken Shelmerdine]

Mtaylorbrown.
I think you are making all the right decisions. It must be a hell of a burdon not being able to reveal your kidney problems to your business associates and the stress of this in itself is not healthy for you long term. It sounds like  the culture of your business associates is money money moey and nothing else matters. I'm sure youd be better of out of it. You may end up with a much lesser income but it will be worth it I think just to have some peace of mind

[Sluff]

I am also self employed and if it were not for my wife's good job I 'm not sure where I would be. No pensions or health insurance. I would be living in a cardboard box somewhere. At least I have health insurance through her. Sounds like you have your plans in order. Thanks for your 13 years of service to our Nation.

[pelagia]

My husband never told much on anyone about his PKD until the last year before his kidneys failed.  We prepared the way you are and have managed to live mostly on one income for almost a year now.  Now that my husband has a transplant, he is starting to work again.  He hopes to be able to go back to something like 1/2 of what he was doing before (he's self-employed, too).  For him the toughest part is traveling -- because of being on planes (germs) and lugging around 3 musical instruments (he's a performer).

[annabanana]

I understand, too, why you've kept it secret. My husband (stage 4 CKD) is self-employed and subs all his work from a local company. They have work for him every day, but if they knew the extent of his illnesses, they would probably slack off giving him work. So whenever anyone there asks how he is doing, I always say "great!" Because he wants to work until he drops.

[paris]

If I could start all of this over, I wouldn't tell any of my co-teachers or parents.  Well, I didn't tell the parents, but good news travels fast!  People put you in the grave before you are ready to go! They treat you different and I got sick of trying to explain it.   Once the church found out, well, they all thought I was a goner.   Next time, only those who really need to know

[kitkatz]

Next time? There ain't going to be no next time around here! Not doing this again, ever! Dialysis sucks!

[mtaylorbrown]

Folks

     Thank you for all the positive feedback. Ironically, I was discovered. A co-worker's mother is on dialysis and he knew all about my fistula. He said he figured it out when I described the Thrill.  .

     I came clean with my partners and got a better than expected response from all of them. They agree that I need to keep this from the client for the meantime.

     I have finally seen the responses that interpret my problem as having one foot in the grave. I don't like that at all.

     I've had two good days in a row. Yippee!

I hope all of you are doing well,
Matthew

[Rerun]

I have a small home for sale in Sacramento if that helps. 

                                 

[Sunny]

Disability laws protect you, even if self employed.
That said, Don't lose your job if you can help it. Finding another job is very difficult. Who wants to hire a health problem like us. It is true that prospective employers are barred
by law from asking about your health, but if you are trying to find work in your field, word gets out. Sounds like your partners are very understanding and accommodating.

[Nan]

I kept my PKD a secret......my immediate family members knew of course, but I did not talk to anyone else about it.  I guess I was kind of in denial, and I am most definitely a POSITIVE person, so I avoid talking about negative things.  If I had to do it over again, I would do it the same.  Friends and people were shocked when I went into ESRF, and started dialysis......they couldn't believe I had this kidney disease and never told them.........I felt, if I didn't talk about it, then maybe it would all go away!