Kidney Quest: Surgery & Recovery

Cardiac operating room (Photo credit: Ruhrfisch)

If you are anticipating becoming a donor, the hardest part has past once the day of surgery arrives. The procedure is much like any other peritoneal surgery.

1. You will be taken into the OR.
2. You will be given an IV and anesthesia.
3. You will have a breathing tube because the anesthesia suppresses your respiratory system.
4. You will wake up and discover you have save a life.

The recipient will follow the same procedure. In our case, my brother's procedure began about two hours after mine. He had the adjoining OR.

Your recovery will be a bit more difficult than the recipient's. The surgeon must penetrate the peritoneal cavity. So the next day you will have a liquid diet.

The kidney is implanted in the peritoneal pocket. This is a section under the hipbone. My rail-thin brother can feel the kidney when he bends. Because the surgery is not as invasive, the recipient will be on a full diet the next day.

The donor will be released in one to two days, and you can return to work in about a month. The recipient will be released in about four days.

If you have any questions about what to expect, please feel free to leave a comment.

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• Kidney Quest: Last Tests

Kidney Quest: Last Tests

In the last week, you will have the last tests. For us, the test came five days before the transplant. Alan and I returned to Mount Sinai for final testing. Since the HLA (Human Leukocyte Antigens) can change, within a week of the transplant, the recipient and donor must be re-matched to be sure we were still negative antigen reactive--i.e. he won't reject my kidney.

Alan had to have an X-ray and CAT scan. We both needed to be examined by an anesthesiologist. Alan had to be seen by the doctor who would do his surgery. I had to see mine.

So on surgery minus one week--you can expect:

1. an additional cross matching
2. and X-ray and CAT scan
3. a check-up by an anesthesiologist
4. a check-up with the surgeon

Site of kidney extraction:

Formerly, ribs had to be removed and the kidney was taken out from the donor's back. This left the donor in a lot of pain and often produced unsightly bulges in the muscles. Donors complained, so doctors began taking the kidney from the front. Still, ribs had to be removed.

Once laproscopic surgery became feasible, the kidney had generally been removed near the navel and no ribs were taken.

My doctor took it one step further. He would remove the kidney near the pubic bone. This would leave the scar hidden by bathing suits or underwear. I nice thought for a single, fifty-year-old!

It took us three months to complete everything. However, all the tests can be completed within three weeks. Most of the time and effort is spent before the surgery.

Kidney Quest: Interlude--The Last Days--Perspective

Night lights (Photo credit: dlanham)

Our kidney transplant would take place shortly after the results for the MRI and sonogram came in. I returned home. Within a week, I knew everything was a go, and I needed to make my final journey back to Mount Sinai for our last tests scheduled for November 13. My brother-in-law flew his Cessna up to Malone, and whisked me back to New York City.

I sat in the back of the plane and studied the world beneath my feet. The sky was dark, the ground studded with lights. I watched the cars snake along mountain roads, watched light pool in towns like Lake Placid, saw them flood Albany. This scene always mesmerized me, made me realize how small we are, how vast the world.

Inside those tiny lights lived people, many with big problems, but how small they seemed up here. The perspective made me remember Isa 55:8-9. "'For my thoughts are not your thoughts, neither are your ways my ways,"  declares the Lord. As the heavens are higher than the earth, so are my ways higher than your ways and my thoughts than your thoughts.'" We struggle here on earth and forget the big picture. We forget our suffering, in the scheme of eternity, is slight and is short in duration. Life hurts everyone. No one is left unscarred. We have to remember that God sees all, has all in perspective and cares more about each of us than we can fathom.

The peace in the sky lulled me to sleep. I awoke as we flew over the Long Island Sound, a black desert with no boat lights on this dark and foggy November night.

We descended through clouds, trusting instruments to make a safe landing. In a few days, I'd be trusting more technology to keep me and my brother safe. My life would be in the hands of a skilled physician. 

No matter what trial we face we have to remember two things:

1. Keep all in perspective.
2. Keep all in God's hands

How about you? Have you let life distort your vision of the bigger picture? How have you let go and trusted God?

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• Kidney Quest: Hurry Up and Wait: Interlude
• Kidney Quest: The Final Sonogram and the MRI
• Kidney Quest: The Story of Organ Donation
• Kidney Quest: Initial Screening for Donors
• Kidney Quest: Blood Tests: AKA The Vampire Syndrome
• Kidney Quest: 24 Hour Urine Collection
• Kidney Quest: Save the Urine

Kidney Quest: The Final Sonogram and the MRI

Once blood tests have been completed, two additional tests remain: an ultrasound of the kidneys and an MRI.

an image of kidneys from an MRI

Most people today have had ultrasounds. The most difficult part of this test is the cold jelly. Like stethoscopes, I believe the jelly is stored in the freezer before use. But the ultrasound test is surprisingly comforting. The cool gel relaxes. The tech kept the lights dim, and the slow rotation of the trandsducer probe--the probe that sends the sound waves to the computer, felt like a soft massage--a belly rub which lasts about fifteen minutes.

The ultrasound checks the health of the kidneys, but a more detailed test must follow. This is the MRI or magnetic resonance imaging. This will test, in depth, the blood vessels and the kidney.

An MRI representation

How the MRI Works:

1. You are slid into a large open tube so that the kidneys are central to the imaging
2. The MRI can make images along any plane. The CT can only take it alone one plane and then the patient needs to be re-positioned.
3. The magnet in the MIR is one-thousand times stronger than the earth's magnetic field. Thus stethoscopes, paper clips, pens, etc. can be unexpectedly pulled out of pockets and hurled toward the magnetic center.
4. Patients are screened for metallic implants. If a patient had a staple or pin implanted at least six weeks prior, he or she can safely withstand the magnetic field because scar tissue builds up and holds the pin in place.
5. The MRI works with hydrogen atoms.As the magnet of the MRI works, the atoms essentially line up along the magnetic field, with the MRI either pointing toward the patient's head or feet. However, enough don't, and it's from these that we get the image.
6. MRIs have no radiation. The only drawback is for those with claustrophobia. Since can be in the machine for over an hour, the closed space terrifies some people. But today, we have open MRIs--so essentially, no complications from the MRI unless the patient develops an allergy to the dye.

Kidney Quest: Blood Tests: AKA The Vampire Syndrome

After Mt. Sinai sucked my blood dry like a vampire falling off the wagon, my brother-in-law flew me home in his Piper. Autumn had settled over the Adirondacks and the land below me danced in orange and red and green. Dying, in the natural world, is beautiful.

Neil picked me up at the airport and drove me home. There I had a message waiting for me. Mt. Sinai had not drawn enough blood for all their blood tests. Would I please come in at my earliest convenience?

Hmmm--I took a day off to have these blood tests done. Now they needed more. Done in NYC. Not Malone. Told me Malone wasn't good enough.

Okay, I showed them the error of their ways and they faxed a script to Alice Hyde Medical Center. Once there, the phlebotomist came in with labels for nine vials of blood.

NINE! Donating keeps vampires in business.

So what is tested through blood tests?

1. chicken pox
2. rubella
3. electrolytes
4. white count syphilis
5. toxoplasma
6. hematoligical systems
7. clotting mechanisms
8. glucose intolerance
9. liver function
10. pancreas function
11. HIV
12. herpes
13. hepatitis A, B, C
14. CMV--cytomegalovirus
15. CBC

If you are planing on donating, be prepared for an alphabet soup of blood tests.


Oh. And the last indignity? They handed me a urine specimen cup. Apparently, the twenty-four hours worth wasn't enough!

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• Kidney Quest: 24 Hour Urine Collection
• Kidney Quest: Initial Screening for Donors
• Kidney Quest: Hurry Up and Wait: Interlude
• Kidney Quest: Matching
• Kidney Quest: Save the Urine
• Kidney Quest: The Story of Organ Donation
• Kidney Quest: Save the Urine--Part 2
• Kidney Quest: Avoiding Dialysis

Kidney Quest: Hurry Up and Wait: Interlude

Mt. Sinai Hospital is renowned for making clients wait.

Lugging my gallon jug of urine, my mother and I arrived for my 8:30 appointment. That's a.m., as in having to leave the house by 6:30.

Other patients already filled the seats in the reception area. We approached the desk, gave our names and were told, "We don't schedule 8:30 appointments." The receptionist pointed us back to the room of other people apparently not scheduled. "Take a seat."

We waited.

And waited some more.

And more.

Finally, at nine-thirty, someone freed me from my gallon of urine, and I was called in for my psych eval. All donors will have to meet with a social worker to determine if they are mentally competent to share a kidney.

"Why do you want to donate a kidney to your brother?" She asked.
"Because he's my brother."
"But why?"
Why? He's my brother, and he'll die if he doesn't get a kidney. "He's my brother."
I guess they assumed I loved being dissected and my superfluous body parts apportioned out. I'd seen people like that on the TV show ER. But, I simply loved my brother and didn't want him to die.
"Do you have any concerns about the surgery?" Her question interrupted my musing about her repeated question about why I thought Alan should have a kidney.
"No."
"You seem pretty relaxed. Any worries?
I wondered if I was supposed to be more worried. But so far, no fears arose about the course I was taking. "This feels right," I said.
She asked a couple more questions and my interview ended.

After three hours of getting to the appointment, my psych eval lasted about ten minutes.

Thank heavens they were also taking a chest x-ray to check for tuberculous and an EKG to make sure I had a heart. Otherwise, lugging a gallon of pee for a ten minute interview would have been a long ordeal.

But you don't need to know the ordeal the rest of the day proved to be:

1. Mt. Sinai wouldn't accept the information I gave them about Alan's insurance (his would pay for my testing because this was for his health).
2. forgetting to fax said insurance request to my brother
3. waiting hours for this to not be done
4. walking cross-town for the EKG--which wasn't done at Mt. Sinai
5. being told the address on the appointment form was the wrong address
6. returning to Mt. Sinai to find the fax-lady was out to lunch

We were sent to a another receptionist. He looked at my chart, told me everything was there, had been there from the start and that we should have had no problem.

I went to another exam room, stripped, got x-rayed and finally could head home. (Remember, home was seven hours away--I'd head north the next day.)

Oy vay--and the testing wasn't done.

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• Kidney Quest: The Story of Organ Donation
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• Kidney Quest: Save the Urine--Part 2

Kidney Quest: Save the Urine--Part 2

A container suitable for the 24 hour urine test!

One of the tests needed to determine the viability of a donor is the twenty-four hour urine test. You can see all the details in the previous blog--just scroll down.

This came with several undoable stipulations:

1. all urine had to go directly into the prescribed bottle
2. it had to be refrigerated
3. non could be discarded

So forget about your morning java.

Several problems reared their heads--such as being unable to fit the jug under me, fitting everything into the  prescribed jug. And how do you leave the house? Go to church? Eat out for breakfast and drink IHOP out of coffee?

The solutions (this all involves violating the letter of the law):

1. For about eight bucks, you can buy a "specipan urine hat." This is a plastic measuring cup (so to speak) that looks like a top hat. You place it on the toilet. The rim holds it in place.
2. For living a life outside of your home? I simply found a plastic container with a secure lid. Instant Porta Potty.

And with this complete, and on my way into Manhattan, I thought the worst of my testing was over.

Nope.

Stay tuned to tomorrow's installment.

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Kidney Quest: Save the Urine

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).

Logistics:

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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Kidney Quest: Avoiding Dialysis

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 (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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