Appeal to your chosen transplant center as soon as possible

SURVIVAL TIP: Remember that one in three people will develop kidney disease, and the only way to know, short of kidney failure, is blood tests.

INTERIM, JULY 2002 – FALL 2006

After getting the diagnosis of IgA Nephritis, I began taking a handful of medicines every day and night. And patients with declining kidney function need routine labs every few months and then more frequently. Along the way, patients in renal failure give urine specimens, but eventually, the urine tells the doctors nothing, and the bloodwork provides for significantly more analysis. Occasionally, the doctors require a 24-hour urine specimen. If you have not done this, brace yourself. They give you a huge jug with chemical preservatives in it – bigger than a gallon – to keep refrigerated. And they give you a “hat” to put under the toilet seat to collect the urine. Each time you urinate, you transfer it into the jug and return the jug to the office the next day. As I realized late one afternoon, this must be done when the next day is a weekday. (Ho. Hum.) Collecting a day’s urine makes me quite glad I’m not a lab technician. The office staff swears the sealed jug won’t contaminate your refrigerator. If you have an outside refrigerator, use it. I always had microscopic hematuria, or blood, in the urine. But no one ever considered that it was a sign of a serious disease, not even the urologist (a specialist in the male and female urinary tract and male reproductive organs). Hematuria can in office specimens, but not to the naked eye.

Although my local nephrologists follow me and see me for regular visits, they referred me to the transplant surgeons to get me on “the list”. The main list is the UNOS list, or United Network for Organ Sharing list. UNOS coordinates organ sharing for the U.S. If an organ matches, it can go anywhere in the United States, if time allows. Different organs can last different lengths of time outside of the body. The UNOS website, https://www.unos.org/, provides more information than you can think to ask. More than 122,873 people in the U.S. are waiting to receive a life-saving organ transplant,” based on OPTN/UNOS data as of July 7, 2015. That’s roughly twice as many people as reside where I live and roughly the size of Hartford, Connecticut, and Santa Clara, California. (“American FactFinder – Results”. United States Census Bureau, Population Division. Retrieved May 21, 2015.)

Read the information on the following link if you need a transplant or are considering giving now or after your death. https://www.unos.org/donation/facts/ or www.transplantliving.org. Remember that one in three people will develop kidney disease.

UNOS maintains the master list, but locally, a patient can choose up to three transplant centers to get on their local list. UNOS procures organs for local patients, if there is a good match. If not, the organ is offered to a larger area of candidates. You must apply to transplant centers to be accepted. Thankfully, I was accepted at CMC, close to my home. It is the only place I listed because after the transplant you need to be close for several weeks for lab work before 8 a.m. Then housing costs are involved if you go hours away. Grants can help, but I chose to stay local.

Getting on the list takes several visits and a few day-long meetings with doctors in a few specialties, social workers, financial counselors, a nutritionist, and probably some I’ve forgotten. When I went to see the transplant specialists, they kept asking, “How much urine do you make?” The surgeon was really practical. He asked if I made a soda can full and a couple of other sizes that I could easily relate to. Finally I asked a nurse why they ask about urine. “Water in water out,” I said. That’s when she explained that the bladder is a vessel to hold urine, but the kidneys actually separate the waste from the blood, MAKING urine. It took me seven years to have someone spell that out. Other patients told me to always practice interrupting the stream to keep the muscles in shape. Otherwise, you lose bladder control. (Patients talk, you know.) I thank God every time I need to go! But not going as much as others makes me a good companion for road trips!

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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