Life on the edge

[Deanne]

I saw my neph yesterday. GFR 11. Yikes. She wants me to look into what I would earn on disability, just in case. My goal is to continue working. I think I'm as prepared as I can be. I hired a landscape company a week ago to maintain my yard/flower gardens. I work from home about 1/2 the time now. I hope that eases my responsibilities enough to be able to continue working full-time.

[KarenInWA]

Deanne, I worked FT throughout my time on dialysis, and I did HD in-center. I only took time off to get the fistula put in, the the chest cath (mine happened like this, Mon fistula was placed, Tues blood draw and neph appt - GFR was 6, Wed was chest cath placement, started D 2 days later on Fri). My main goal was to not let D take away my job. Like you, I am single and a home owner. I cannot afford disability pay.

I took time off on STD for both my transplant and my emergency surgery that happened in early April. My FMLA is all tapped out, but my job is willing to work with me as needed.  I can start officially using FMLA again this November.

KarenInWA

[Deanne]

Thanks for the encouragement Karen. I want to be just like you! Except I plan to do PD instead of HD.

[MooseMom]

To continue working despite dialysis is a great goal to have, and I hope you can pull it off.  I think your chances of being able to do just that are really high.  You are not plagued by the co-morbidities often seen in dialysis patients who are older and sicker.  I have a cousin who continued to work through three years of dialysis; he did PD but fell prey to several bouts of peritonitis (he's has a rather flippant attitude to looking after his health, so I think he didn't work very hard to keep a clean environment), so ended up in-center, dialyzing in the clinic's first shift. 

A lot of dialysis advocates measure the quality of dialysis by whether or not a patient is able to stay employed, so really, the whole point is to be able to carry on life as usual as much as possible.  You are well prepared, and I have every confidence that you will be able to eventually see your PD treatments as just one more thing you have to accomplish.  It's very smart of you to delegate chores.  Think of it this way...the economy is terrible, and businesses like landscaping companies are desperate for jobs, so you are stimulating the economy!  LOL!

How are you feeling with a gfr of 11?

I'm sorry I don't know the answer to this, but what kind of work do you do?  It's great that you can do so much from home.  With all of the ways to instantly and electronically communicate, I don't know why more people can't work from home.

Keep us posted, OK?  Good luck to you!

[Grumpy-1]

Deanne  I'm on PD and work 13 hour days (9 hours work - 4 hour commute).  I'm on a cycler evening and nights, but do manual exchanges twice during the work day.  Never a problem for my co-workers or boss.  In  fact my boss will get on my case if I try to skip an exchange due to some meetings or such.    When I first started on D, I was in the center 3 times a week for 4 hours each.  My work schedule was such that I would go directly to the center for hemo (4 hours) go home and relax for a bit then to sleep, up for work.  Repeated this routine for about 6 months while the PD access was placed and healed.   Grumpy

[malaka]

One issue is insurance coverage for dialysis.  If you're not insured privately or on Medicare, you will quickly learn that you can't earn enough to pay for dialysis unless you are a major rock star or something similar.  I think my "bill" is $14K per month.  Wife's work has spouse insurance coverage for me.  Thankfully.  I am/was self-employed so I did not insure myself. 

My situation makes it impossible to contuniue working enough to make any profit.  So I'm shutting down the shop.  I'm on HD due to some protein problem that makes PD undesireable.  With HD, you essentially have another job and the rest of the world refuses to adapt to your schedule in many cases. 

So, I'm going on SSD.  I expect my first check next month, 7 months after I started dialaysis.

[AnnieB]

I think you can check at the SSA to find out how much disability you would get at this point. If you're at end-stage, that should automatically qualify you for medicare (and I have heard that that could start immediately if you are doing home dialysis).

You're doing all the right things. Like MooseMom said, keep us posted.