LSB, I think you totally misread what Dori was trying to say when she said she was rolling her eyes and shaking her head. One of the problems with email or message boards is that it’s hard to know the intent that someone had when they typed what they typed. I’m sure she said this because this is how 40% of people end up in kidney failure with little or no preparation and she was upset that this happened to you because you didn’t get more follow up care. It sounds like you took what she said as meant negatively toward you. I’m sure she didn’t intend for you to think she thought you did anything wrong. I suspect she was thinking that it was too bad that your nephrologist wasn’t more forceful in advising you and your parents, especially your custodial father, how important it was to get follow up care. Getting regular follow up care might have postponed your kidney failure. Neither of us know whether your father who had custody over you understood or believed that your kidney problems could get worse. Denial is a common reaction to kidney (or any health) problems. In any case, the result was that you didn’t get follow up care after your initial diagnosis which led you to nearly die and have to start dialysis on an emergency basis.
I’m really sorry that medical “professionals” treated you the way that they did just because you’re gay. I know some gay people on dialysis and suspect there are many others who are gay but haven’t come out because of just what you experienced. Medical professionals are taught how to protect themselves from infection and should treat everyone the same whether they do or do not have an infection. If they can’t do that or they’re afraid of getting infected, they should get out of the medical field. I hope people today don’t react like they did then, but I suspect some do. There needs to be more education in the medical community on how to treat people with dignity and respect no matter their gender, race, color, religion, sexual orientation, etc. The way you were treated was disrespectful. Your sexual orientation is no one else’s business and in my opinion should not be on the face sheet of your chart. You have the right to ask that to be removed if you believe it affects people’s treatment of you.
As you say, statistics are numbers and not people. However, they are the best we have to explain what happens to people with kidney disease and kidney failure. We use statistics to try to help us understand problems that have occurred so we can keep people from having experiences like yours. I know people who have catheters and haven’t had problems. I’m thrilled you’re one of them. However, data on hundreds of thousands or patients shows that for whatever reason, catheters are more likely to cause problems than grafts or fistulas. Maybe it’s because most patients with catheters are doing dialysis in-center and having multiple staff taking care of them and possibly not doing appropriate catheter care. Maybe it’s poor surgical technique that caused an infection. Maybe it’s because having a catheter in the upper chest can cause scarring of vessels to other places in the upper body. Maybe it’s because the catheter goes into the heart where it doesn’t take much to cause a problem. I’m glad your doing dialysis at home where you’re caring for your catheter because you probably take more pains with it than anyone else might.
Dori and I have been trying to understand how some people keep their jobs as their kidneys are failing while others can’t, looking at things like gender, race, other health conditions, treatment of anemia, choice of first treatment, etc. We hope to publish our data in a major medical journal so that doctors will know the types of things that they can to help people keep their jobs. Our goal is to help keep people with kidney disease and kidney failure from being forced to live in poverty or near poverty as many ESRD patients, especially those without partners, do.
CCPD is more work friendly because you don’t have to interrupt your day (unless you have to do a daytime CAPD exchange). The number of patients on CCPD is growing while the number of patients on CAPD is shrinking, probably in part because of the burden of doing multiple exchanges each day. We believe that home hemo is at least as work friendly as CCPD, but the number of patients on HHD is too small to do meaningful statistics.
I’ve worked with hundreds of patients over my lengthy nephrology social work career. I’ve become such a rehab enthusiast and promoter of employment for people with kidney disease and kidney failure who are physically and emotionally able to work because I’ve seen what a hard life it can be for those living on SSI and SSDI who worry about finding and paying for liveable housing, keeping their car running (or depending on undependable transportation), finding and affording health insurance to pay what Medicare doesn’t, paying routine bills, affording drugs, buying higher protein food, and trying to save a little money to go out to eat or go to a movie or buy something they want.
I hope you (and others on this board) don’t think we’re trying to ram work down people’s throats. We understand that there are patients that are retired because they wanted to retire or are too sick to work. We just hate to see people forced to retire when they’d like to keep working or return to work.