Plan for unforseen circumstances

SURVIVAL TIP: July 28 is World Hepatitis Day. Dialysis and transplant patients are immunized against a couple of types of hepatitis. This isn’t necessarily covered by Medicare or insurance. Some patients might choose a “high” risk transplant from someone who has a disease such as hepatitis.

December 2006
The kidney doctors require patients in end-stage renal disease (ESRD) to attend classes on options, from kinds of dialysis to transplantation. My aunt who wasn’t ruled out because of pre-existing medical conditions like the others with immune disorders and kidney stones tested to donate, but some of her lab numbers were higher than the doctors liked. So she was working to reach the blood sugar goals. I had no idea that I would actually need dialysis because I had a donor who passed the first several stages of testing. The first step is that the blood type must match. Then there are more extensive labs. She drove up a couple of hours from home for a full day of consultations with the surgeon, social worker, nurse, and financial liaison in addition to submitting to the blood tests, EKGs, and other tests. The process took months, and I got weaker. Cheryl was doing all she possibly could, including going off of her estrogen, which can give a false elevated blood sugar reading. She and my uncle both stressed that they had to love me for her to go off of her hormones! But she is amazing. They are a lesson in what marriage should look like.

My family knows I don’t keep in touch well. And when I don’t feel good or don’t have good news, I stay somewhat secluded. Of course I saw them at holidays, for Mother’s Day and Mom’s birthday. And I tried to be upbeat.

They had no idea how sick I was. Jeff and I had purchased two-for-one grave plots when I turned 30. Hey, you can’t beat a 2-for sale. My parents and grandparents had all prepared for their final expenses, so it seemed logical that I would, and that was before my diagnosis. Then subconsciously, and more and more to Jeff, I planned for my funeral. I picked my songs and told Jeff what was to go to whom. I got the medical power of attorney and general power of attorney in place. I can’t imagine what Jeff was going through at the time. I was doing what seemed necessary without acknowledging that I was ready to die. I was sick. My life diminished before me, day by day.

In mid-December, my secondary nephrologist told me that I needed dialysis sooner than later, and we chose peritoneal dialysis that I could do at home while I slept. The catch was that I needed it before Christmas. So I was in a relatively small town searching for a surgeon who could install a catheter in my abdomen within two weeks. I remember going to his office and lying back on the table as I waited for him. I was so exhausted. The good news was that the doctor could do the surgery. The bad news was that at that time of year, many people are doing end-of-year procedures to take full advantage of their deductibles paid for the year. So finding an open operating room was the challenge. The doctor scheduled the surgery for December 26. But …

Join me next Tuesday to see what complications were waiting. (I hate it when Jeff is right!)

If you share the concerns of a dialysis patient or one who is seeking a transplant, please share your experiences or your questions.

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About dialysisgal

When I joined the 450,000 Americans on dialysis, I wondered what "normal" would be. Would people stare at my access and ask what was wrong? In this blog, I hope to save other patients and their families from the difficulties I have faced. I want to share my experiences, what I learned, had to ask and was shocked to find. I am not a medical professional, but I hope we can have a conversation to help you better understand what you or someone you love with chronic kidney disease (CKD) might expect while living with dialysis.
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