By Jack Fassnacht
When I started reading Beverly Kirkpatrick's article titled "Life After Transplant: Taking A Look At Some Common Barriers" published in the very first issue of Transplant Chronicles*, it sounded very familiar. Those were my problems she was describing! Looking down her list of barriers to a healthy life after transplant, I thought, "I've faced almost every one of these!" Here are some of the barriers described in the article and how I managed to survive them:
- Physical Changes
Many transplant recipients experience weight gain, unwanted hair growth and steroid induced “moon face.” I spent my first few post-transplant years with a face as round as the moon, but didn’t really mind. Compared to how I felt pre-transplant, it was a small price to pay. And as a guy, extra hair wasn’t a problem, although I can sympathize with girls who experience this side effect. Weight gain is something we all have to be careful about, transplant or not. If any of these side effects are getting to you, talk to your doctor. She might be able to help by changing your medications and/or dosages. Just don’t change dosages on your own!
- Fear of Rejection
I still worry about rejection, so this barrier never went away for me completely. Even today when I get a cold that lingers more than a week, which seems to happen once or twice a year, I worry that this might be the “big one”. A visit to my nephrologist always helps calm my fear.
- Financial Problems
A transplant can cause or exacerbate financial problems, including difficulty in getting a job. My policy has always been to be up front about my health so an employer knows what they are getting. While on dialysis I was turned down for a job for which I was well qualified, although the potential employer never said that was the reason why. I interviewed with another company and convinced them I would be an asset even while on dialysis. They hired me while I was on the transplant waiting list, I got “the call”, and I showed up for my first day of work with my new, transplanted kidney!
- Health Insurance
At the beginning I was lucky. After I used my one year of Medicare coverage** my private health insurance took over to help pay for my medications, which otherwise would have cost me well over $2,000 per month. Long story short: I eventually lost my private health insurance and now rely on a health insurance program offered through the State of Illinois (I’m now self-employed). Thank goodness I live I in an enlightened state! Many other states offer similar programs for hard-to-insure people. If you’re having difficulties paying for medications, I urge you to tell your health care providers. They can put you in touch with a social worker who may be able to help. Or contact the companies that make your medications and ask for help. Never stop taking your meds because of an inability to pay.
- Barriers to a Normal Lifestyle
The article lists three: loss of motivation; inability to let go of the “sick role”; and dependency. Now I’ll admit that dialysis and two kidney transplants (and the passing years) have cooled my ambition to rule the world; these days I’m happy just getting up in the morning! But I find my re-arranged priorities to be a blessing and not a problem. Life is about people. Life is about family and friends. Life is about loving others and being loved. If you’ve got that, you’ve got everything.
*Editor's note: Beverly's article can be viewed here.
** Editor’s note: Medicare now covers the first three years of transplant medications.