Wednesday, May 29, 2013

Kidney Quest: Save the Urine

Hood Milk Bottle
Not a big enough bottle for the 24 hour urine test
Sunday, October 12, 2003, the day before the barrage of testing, I began the dreaded twenty-four hour urine collection.

Why must we collect a full day's worth?

This test is a more accurate measure of creatinine levels. Since creatinine is a muscle by-product, the more muscle one has, the more creatinine she produces. So weightlifters generally have high levels and babies have low ones.

That's the scientific end of the story. However, consider the logistics.

Mount Sinai mailed me a jug. It looked like a plastic half-gallon milk container. The opening was  about four inches in diameter. Have you, as a female, ever tried to pee in a milk bottle? (and I hope you males don't do it regularly).

  1. How do you aim and get the pee into the bottle and not on your hands?
  2. How do you hold a milk bottle under you and still fit over the toilet?
  3. How do you go out anywhere, drink lots of coffee and not use the ladies' room?
  4. How do you refrigerate it? Yes, you heard me right. The whole kit and kaboodle has to be refrigerated. (What if someone mistook it for apple juice?)
  5. How do you fit a day's worth of urine in a half gallon jug?
Now isn't this juicy info for a blog? Tune in this weekend for the answers.
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Saturday, May 25, 2013

Kidney Quest: Avoiding Dialysis

A hemodialysis machine, used to physiologicall...
A hemodialysis machine, used to physiologically aid or replace the kidneys in renal failure (Photo credit: Wikipedia)
Unfortunately, Alan's kidney function deteriorated to about twelve percent--the point where dialysis is indicated. Transplant results improve if no dialysis occurs, so our five year wait shrunk to a matter of weeks.

My brother roofs. That means he spent twelve hours a day on the top of steamy roofs, hauling shingles, hammering them in and cleaning up. It was August, hot on Long Island and his busy season. If anyone knows a roofer, he knows this is not an easy job--one that is hard on a healthy body, and worse for one that is failing.

If potential donors weren't already incubating, Alan's nephrologist would have begun dialysis. Although hemodialysis saves lives, the procedure taxes the body. So with two of us being tested, he waited. Instead, he sent a nurse to Alan's home. She explained how a shunt would be insertd into an artery and vein that was grafted together in his abdomen.
Peritoneal dialysis
Peritoneal dialysis (Photo credit: Wikipedia)

This fistula could then support the turbulent blood flow of the procedure. Then every night, while Alan slept, special solutions would be infused into his abdomen. They would stay there for a while and then be drained out. This process would keep him healthy.

He was lucky. He could do his dialysis at home. I worked with a man who used to take care of his dialysis at work until the illness sent him into retirement. Most people need to spend three to five hours in a hospital, three days a week. The process exhausts the patient along with the caregivers who must transport and often wait for the patient.

However, it would take four to six weeks for the fistula to heal, so they had to begin now.

Who would be the donor--Art or me? We clearly had a decision to make.

Have you had to have dialysis or known someone going through it? I'd love to hear your story.
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Tuesday, May 21, 2013

Kidney Quest: Matching

Within a week, as promised, we had the initial results of the typing. The first measure--blood type.

Prior to the "Results Show," the DeFord audience had elected Bob by a vote of 5-1 (guess who had been the lone dissenter?). Only those with A+ blood needed to apply, as that matched Alan. Only Art and I qualified.

I was in the bottom half of the match. On a six point scale, art was a four. I scored a two. Thinking two was too low, Susan Siriwatana, our case manager, assured me successful transplants happened with a zero score. (Which, I proudly announce, I am not, never ever have been a zero).  The first determinant is the blood type. However, it does not mean you are a match, but you can be considered.

Our tissue typing would be repeated later in the matching process, within a week of the surgery, because compatibility levels an change.
HLA-A1 (Photo credit: Wikipedia)

The Matching Process:
  1. Donor and recipient need the same Human Leukocyte Antigens (HLA). These are proteins on the surface of the white blood cells and tissues in the body. Siblings have a 1 in 4 chance of being identical matches. Just because you share blood type doesn't mean you share the HLA.
  2. Matched for specific immune reactivity. This checks to insure the recipient, in this case my brother, had the antibody toward my tissues. (How could he?) Antibodies are use to fight off foreign bodies such as bacteria, viruses and stray kidneys. The antibody will only injure the donor if he has the specific antibody to the donor's particular HLA. You are looking for a negative cross-match.
  3. HLA antibodies can come and go. The Percent Reactive Antibodies (PRA) needs to be retested within a week of the surgery. The PRA is determined by testing the recipient's serum to sixy types of HLA.
Thankfully, Susan knew this was more information than we needed. For us, I knew I only ranked a 2/6 and had five years to make a decision.

Or so I thought.

More later.

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Friday, May 17, 2013

Kidney Quest: 24 Hour Urine Collection

Alan and family today
After the phlebotomist took vial after vial after vial of blood, I returned to my siblings in the waiting room, Here I discovered the problems of leaving my brothers and sisters unattended while the vampire (aka phlebotomist) emptied my blood. They read the information about organ donation that Mt. Sinai thought its donors should know.

"Hey," brother Bob called out. "Did you know that they could transplant portions of a pancreas?"

Fig. 2 The pancreas. 1. pancreatic head. 4. pa...
Fig. 2 The pancreas. 1. pancreatic head. 4. pancreatic body. 11. pancreatic tail. (Photo credit: Wikipedia)
He demonstrated the fact that he could read by pointing out the details. In 2003 the procedure was still experimental (only two to five living transplants a year according to UNOS data and only 160 to date). The best results came from whole pancreas which would come from a "deceased donor" (obviously).

We discovered during this time that most living donations came from:
  1. liver
  2. lung
  3. kidney
Which of course resulted in sick DeFord humor as we considered ransacking our body parts for a brother we adored.

"Bob," Art said, "you can afford to live the wild life and not worry about getting the organs you need."

Bob gave him a blank stare.

"You've got five donors ripening at home." He referred to his five sons.

"Then Janine got me beat," Bob said. Janine couldn't come to the screening because she was expecting her sixth baby in February.

"Yeah," Alan said. "But none of them are ripe yet. You've, though, Bob has three ready to harvest."

We assumed the donors had to be over eighteen-years-old in order to donate. Bob's three oldest boys met that criteria.

We laughed at our sick jokes, and I'm sure we offended others sitting in the office. But the only way we knew to relieve our tension was to laugh.

Then the mood turned somber.

After reading another pamphlet, my sister Marianne discovered another test we'd have to endure: The Twenty-Four Hour Urine Collection.

"What?" We gasped in unison.

"Where does it say that?" I asked.

She pointed it out.

This fact horrified us.
  • ask us embarrassing questions
  • test every part of our bodies
  • take out a kidney
But collect pee for twenty-four hours and then lug it to the hospital?
That nearly transcended our love for Alan.

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Monday, May 13, 2013

Kidney Quest: Initial Screening for Donors

Mount Sinai School of Medicine, New York, NY
Mount Sinai School of Medicine, New York, NY (Photo credit: Wikipedia)
On a hot, humid Tuesday morning, five of us piled into my sister's Suburban and headed to Mount Sinai for our initial screening. Without a long wait in the outer office, Susan Siriwatana, our case manager, ushered us into her office. Every transplant has a nurse who oversees and coordinates the entire process. Here we learned two things that made us gasp. She said:
  1. "We will find a donor because you are siblings." Since four of us were available to donate (my youngest sister was pregnant with her last child, so she was off the hook), Alan was virtually guaranteed a match. As stated in the last post, siblings offer the best chances for a match.
  2. " Blood type is the first eliminator." Alan was A positive. Anyone not A positive or the universal donor would be eliminated.
  3. "After a donor is chosen, the surgery can be performed within three weeks." Three weeks! We gasped collectively. We agreed to matching with the probability of donating within five years. Little did we know, how soon the surgery could be completed.
After our collective interview, we were called in one by one and interrogated. And the questions for our initial organ donation screening?
  1. Have you ever done drugs?
  2. Do you smoke?
  3. Do you drink?
  4. Have you had cancer?
  5. Do you have safe sex?
  6. Ever have hepatitis? HIV? TB?
If you are wiping your forehead and breathing a sigh of relief because your youthful drug habits or smoking have eliminated you--you're not off the hook. Much depends on when it occurred, how frequently and your current health. I failed some of the above, passed others (not revealing which). I still became the donor.

Once the initial screening was over, the phlebotomist drew five vials of blood for testing. It turned out she needed more than five--but that's another day's blog.

Are you considering donating a kidney? Do you have questions or comments? Feel free to add them in the comment box.

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Saturday, May 11, 2013

Kidney Quest: The Story of Organ Donation

My family: Alan far left-back--I'm three to the right of him.
A dear friend currently faces failed kidneys--something that happened to my brother, Alan, about ten years ago. In honor of my friend and her quest to find new kidneys, I'd like to take some time to chronicle my own path as an organ donor.

My brother Alan's kidneys were failing. His nephrologist said he had about five years before he would need a transplant and it was best to begin the search early. The chance of success increases with a live donor as opposed to a "deceased donor."

Kidneys are one of the few organs that can be safely transplanted from a living donor. It's the only one where the entire organ can be used (seeing as we have two). The others being parts of:
  1. liver
  2. intestines
  3. pancreas
  4. lung
  5. skin
In all, but the kidney, only parts of the organ can be used. And the kidney is the most successfully transplanted organ.

If the kidney comes from a sibling, the transplant has a greater success rate because of the genetic ties. The success rate is higher than an organ coming from a parent as the brother or sister genetic make-up from both parents whereas the parent only has her/his own genetic material.

For Alan, as all transplant candidates, performing the surgery as an elective is best. It ensures:
  1. both the candidate and the donor are in the best health.
  2. it avoids dialysis which hampers the success of a transplant because it taxes every organ of the body.
  3. a convenient time when surgeon and patients are not stressed.
With all of this in mind, on August 19, 2003 (two days after meeting my future husband, no less), five of us DeFords head to Mount Sinai's kidney transplant unit at 5 East 98th Street in Manhattan to discover who would be the lucky donor.

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