What are "barriers" and "bridges" to employment for persons with kidney failure? What programs in clinics or the community have helped keep people working/find new employment and/or stay in/return to school? What specific things have social workers and other staff done to encourage full or part-time employment/vocational training/school/volunteerism?

I had a transplant in 1989 and went back to work a year later because I was worried about getting health insurance. Almost from Day 1, I had problems with my employer because of the time off I needed to get my labs drawn, and the fact that I had more absences than other employees because of my immunosuppression. I was threatened with lay-offs if I didn't work mandatory overtime every day, and I was expected to go without a break after I got back from having blood drawn. I had enough evidence of discrimination to take them to the Mass. Commission Against Discrimination, but by that time the kidney had rejected and I had to go back on dialysis. And the health insurance I needed? I learned that there was a one-year preexisting conditions clause, and I would have had to pay for my meds for a year before the insurance would start. I soon realized that I would have to quit work and go on Welfare to get Medicaid for the immunosuppressors.

The problems I would face because of my transplant status weren't adequately explained to me, so when I encountered problems with my employer, it made me feel like there was something wrong with me because I couldn't cope with the stress at work. I had tried to return to factory work, which exposed me to toxic chemicals like solder and MEK. Trying to get back in the workforce was the biggest mistake I made. I had to learn the hard way that you are NOT 'back to normal' after a transplant. Working in a factory where people come to work with the flu because they're afraid of taking time off is not the place to work when you're taking prednisone and cyclosporine! But my transplant team were so gung-ho about getting me back to work, they never told me what to do if I ran into a bad employer. When I told them about the problems I was having, they thought I was making it up! They couldn't believe that any employer would be that discriminatory. There was a definite gap between their perception of post-tranplant employment and my perception of it!

I'm sorry that you had such a negative experience working post-transplant. I don't know if it would have helped if you'd gone to Vocational Rehabilitation.

I think you're right that those of us that want to see people live as fully as possible need to be realistic in our expectations of patients and employers. We need to do a better job of explaining side effects of medications, time it takes to recuperate post-transplant, time it will take for clinic appointments, etc. so patients and employers know what they're getting into.

It sounds like the workplace was not a good one for a transplant recipient in the first place with the chemicals and exposure to infection from many ill people. A good vocational rehabilitation counselor could have talked with you and with the employer before you selected that workplace to make sure that you were able to do what the employer needed while preserving your health.

If that type of work was found to be impossible, VR could have helped retrain you in another skill. You may want to check with your social worker about VR now to see if that agency can offer you a vocational assessment and retraining while you're on dialysis.

There actually are people who work on dialysis and following transplant, but I think it requires effort on the part of the patient AND the employer for the work experience to be successful for both.

I went on dialysis in January of 1986. I had to quit work and go on diability 9 months later. Luckily, I had a transplant just 4 months after I went on disability. I was back in the work force within 5 months of my transplant. I was also going to college. I never perceived my having a transplant as a disability and never allowed it to hinder me living a full life. Medicare remained in effect for 18 months after the transplant, by which time, the one year for pre-existing conditions had past so insurance covered my expenses. I also changed jobs twice since then, never having any problem getting my medications covered. The companies I have worked for use HMOs so I don't know if that makes a difference. Three years ago, my kidney failed and I had to go back on dialysis. I still work a full 40 hour week and my attendance is better than most of my healthy co-worker's. I work in a manufacturing plant, around dangerous chemicals and heavy equipment. I know I am probably not typical, but I am proof that it is possible. Everybody needs to realize that all dialysis patients cannot be expected to return to work and to normal lives. I have seen patients being pushed or forced to go back to work because the doctor will not approve the disability papers, when the patient really is not ready for it. There needs to be a happy median.

I worked for, what was then, the largest communication company in the country. Great attendance record and outstanding performance record. Also a candidate for management. In fact I was a management filler,and well known
in our circle. I was there 15yrs. In '94 I became ill with what i now know was nephrotic syndrome. There were morning's that I could not get out of bed, mornings that the edema was so bad that I could not walk...I was'nt diagnosed for a full year and even though I would take time off work, most of the time taken was vacation time. I am now on long term disability and ss. I have two teenagers,a car payment, a mortage and other expenses. It's tough...but I do not ever want to experience the treatment like that i encountered in '94, the company treated me like a stranger, like i was'nt really sick but it was all in my head, no one ever said,you are lying, but they might as well have! I think all the time that maybe I can get a part-time job somewhere and be ok, However;if I do and end up in the hospital, will I loose it? will I loose my medical insurance for my boys? If I were doing the hiring, would I hire the well person or the one that is sick? they'ed never know the difference.

I know that there are people that work while on dialysis, I've met them- Hat's off to them!!- I'm a pd patient, and I'm not sure if
I'm willing to risk what I could loose by re-entering the work place.

I sometime's feel that perhaps I'm not as sick as I feel, maybe I just lazy, I feel badly that I have this view of things @ this time in my life! I think about what my boy's could have if i worked.

Thanks

I wonder if male transplant patients have an easier time returning to work than female patients? From the accounts I have read about patients returning to work, it seems as if the male patients' employers were far more willing to help them return to work.

The first thing I'd like to say is many more people with chronic illnesses do not work than those who do. People who are can't work should not "beat themselves up" for not working. However, if someone can physically work and wants to work, I strongly believe that the system needs to support this. Further, I wonder if the stress of having too little money and too much time to think about one's illness may be contributing to poor health and early death among people with all kinds of disabilities.

I looked up statistics that are maintained by the United States Renal Data System on new patients. Of new female patients, 21% were working 6 months before dialysis compared with 13% at the start of treatment; 12% reported they were homemakers before and the same percent were homemakers at the start of treatment. For men, 31% were working 6 months before and 21% were working at the start of treatment; none defined themselves as homemakers before or at the start of treatment. The percentage of both men and women reporting they were unemployed at the start of treatment went up from 28% to 33% for women and from 21 to 27% for men. A larger percentage of men reported that they were retired-disabled (33%) than women (27%). If working women and homemakers were added together, more women are productively occupied (according to the categories provided) than men at the start of treatment.

There are a lot of barriers and bridges to overcome them: For limited sharing of information about how to work with a disability and not jeopardize disability benefits right away see www.ssa.gov/work/index2.html; for how to stay as healthy as possible find out about National Kidney Foundation (NKF) People Like Us Live classes at www.kidney.org/patients/live.cfm; for how to find someone to assist you in your job search find out about the NKF RISE program at www.kidney.org/patients/rise.cfm or see information about state vocational rehabilitation offices at www.ssa.gov/work/ServiceProviders/rehabproviders2.html; for your rights under the Americans with Disabilities Act, see www.ssa.gov/work/workta2.htm or the American Association of Kidney Patients' booklet on the ADA that is specific to kidney disease at www.aakp.org/ada.htm. Finally, check out the free information that is available on the Life Options Rehabilitation Program website at www.lifeoptions.org, including a booklet "A Guide to Work Insurance and Finance for People on Dialysis."

New training materials are being prepared right now that will be distributed to vocational rehabilitation offices late in 2001 or early 2002 that should help counselors better understand kidney disease, the barriers that must be overcome, and potential that many have to be excellent employees.

I hope that anyone who is interested and able to work will seek support from their dialysis or transplant staff, other working patients, and oen or more of the agencies that are charged with helping people with disabilities live productive lives.