Adventures of a Kidney Donor

June 1, 2010

Social Networking and Organ Donation

First I have to whine. Still no word from U of M on whether I am in or out as a donor.  It’s driving me crazy!!!

The  U of M transplant committee meets on Thursdays to decide on donor candidates. I had my big tests on May 12. I was already forewarned that the decision may not be made on May 13 because my test results were still coming in late on the 12th.  So when I didn’t hear I figured OK, it will be May 20.  May 20 and May 27 arrived and no word. EEK!! So my mind is racing. Did my liver enzyme numbers (which are only borderline high) kick me out? My blood pressure wasn’t high but the numbers were higher than usual for me. I emailed the transplant coordinator but he hasn’t gotten back to me.

What’s weird is that I am prepared to undergo the surgery. I am even preparing myself to deal with the fact that the recipient’s body might reject my kidney. What I AM NOT prepared for is to be rejected outright at the start. I am a complete stressball and Jackie told me to chill out (in a nice way.)  She says they are busy and this is true. Kiersten (my friend who got a kidney from her best friend) says I am a good candidate and to chill.

This was an interesting article that ran in our local paper today. Social networking is a good way to get the word out on the need for organ donors. One thing that SCREAMS out in this article, REGISTER TO BE A DONOR in YOUR STATE esp if you live in Michigan. Michigan, how embarrassing! We are ranked so low in registered donors!

Social networking has great potential for connecting donors and recipients online but be careful. As we all know, social networking is good and bad. Lots of good people but also some “creepers” as my niece would say.

Social Media Efforts Boost Organ Donors
by Kim Kozlowski  Associated Press  
 

DETROIT — Melissa has used Facebook to keep up with friends and follow the Dave Matthews Band. Now, she’s hoping the social networking site can save her life.

(Melissa), 30, recently put up a page on Facebook looking for someone to donate their kidney to her. She has since heard from about 100 people wanting to get tested to see if they would be compatible. (She) is thrilled because she waited nine years to get the donated kidney her body now is rejecting, and she might have to wait between nine to 12 years for another donated kidney from someone who dies.

“I am a little overwhelmed with the people coming forward,” (Melissa), a Pontiac native whose kidney began failing when she was 16 due to a urinary tract infection, told The Detroit News. “But if they all follow through, somebody has got to match me.”

Using social media

(Melissa) is one example of how patients and activists are using social networking to encourage more organ donations among the living and dead.

Transplanted organs have long come from those who recently died and made their wishes known beforehand. Michigan ranks among the nation’s lowest — 42nd — in the percentage of licensed drivers who are on the Michigan Organ DonorRegistry, said Betsy Miner-Swartz, spokeswoman for Ann Arbor-based Gift of Life Michigan.

Donors must sign up for the registry online or in a Secretary of State branch office.

Activists have tried to pass stronger laws to encourage more participation in the registry and are now using social networking to spread the word that 2,943 Michigan residents are currently waiting for organs.

At a presentation this month, Miner-Swartz encouraged attendees to tweet the need for organ donors on Twitter, and a few days later nearly 100 more people signed up on the registry.

 “Social media works in the world of organ donation,”Miner-Swartz said. “Not only are we better able than ever to spread the word, but we’re seeing tangible results that ultimately will save lives.”

$340,000 grant

Sandi Smith, the director of Michigan State University’s Health and Risk Communication Center,has a $340,000 federal grant to study how Facebook can be used in conjunction with college student competitions to increase the state donor registry. Ads were placed on Facebook this school year for Michigan colleges to compete to see which could sign the most students on the donor registry. The study is still ongoing, but Smith is optimistic. “We are thrilled with the initial results,” she said. “It is a method that shows a lot of promise, particularly with people in the 18- to 24-year-old range.”

In the last decade, living organ donation among relatives, friends and spouses increased, said Dr.Jeffrey Punch, chief of the Division of Transplantation at University of Michigan Health Systems. A growing number of people also have begun to donate to strangers for altruistic reasons.

Some disapprove of those needing organs soliciting strangers through social media or other unconventional ways, Punch said, because critics believe that could be more beneficial to those who are good-looking, come from certain races or have better marketing skills. Others fear a black market in spite of federal laws banning payment for donated organs.

But Punch said, “We’re not in a position to judge people on how they connect.”

(Melissa), who created the Facebook page “Mel Needs a kidney,” is directing those who want to help to U-M for screening. But she has promised to make her effort bigger than herself.

“I tell everyone, ‘You should really consider donating to someone else,'” said (Melissa), who lives … near Flint. “There are so many people who are not organ donors and could save someone’s life.”

Go here for resources on kidney donation

May 16, 2010

Resources on Kidney Donation and Transplants

Thought I should do a blog without me blathering on and on that JUST has resources. So here ’tis.

 INFORMATION ONLY!!!

CONSULT YOUR MEDICAL PROFESSIONALS, DONOR ADVOCATE AND COORDINATOR.

General Resources

Organ Donation After Death

Polycystic Kidney Disease

Kidney Donor and Recipient Stories

Matching Donors and Recipients

Donor Evaluation 

The Kidney Removal Procedure (Nephrectomy)

Preparing for Surgery and Care After Surgery

FOLLOW WHAT YOUR HOSPITAL SAYS (This is just to give you an idea.)

 http://urology.jhu.edu/MIS/lap_nephrectomy.php 

Support and Psychology

If you have trouble from your employer about time off etc. or trouble from an insurance company when trying to buy coverage in the future, have your donor advocate or coordinator from the hospital talk to them.  Check with your state to see if there are laws that help employees with paid leave for donation or that protect your position while you are off. If you are a federal employee and a donor, there are federal laws that cover you. See if your state offers tax deductions for any uncovered donor expenses.

After Donation

GFR Rate

Paired Donation

Altruistic and Non-Directed Donation/Donor Chains 

The Future

Statistics

**For Michigan residents or check with your local library.

 

July 2013

 

 

May 12, 2010

A Trip to University of Michigan Hospital

PLEASE LET ME PASS THE ELIMINATION ROUND!!

I went to the U of M transplant center today for my big tests!  This is the big elimination round. My biggest fear is that they will find something wrong  so I can’t donate. That would be terrible! It’s looking good so far. The committee meets tomorrow and next Thursday so I should know tomorrow or on the 20th. Gulp. The transplant coordinator says so far, so good. They will examine my Cat Scan. He wants the blood test and urine analysis redone. Not a big issue, but my fatty liver deposits (or something like that) are a little high. It wouldn’t prevent me from being a donor but he wants to look at it more. My LDL is a little high so I am sure it is all related. The surgeon said the LDL is not a big issue.

My good buddy Kris went with me.  Jackie had dialysis and couldn’t go–I will be so glad when she is free of that!  Kris used to live in A squared so she helped me, the navigation impaired. She rescued me on US 23 which was a parking lot due to construction–whisked us off on a detour which was a breeze. She navigated me around Ann Arbor and the hospital (I am an IDIOT with directions.) She listened to me babble, sat around for HOURS–she is great. She wouldn’t let me buy her dinner for her trouble so I am going to kick her Scottish ass–ha ha.

TOUCHING STORIES ALREADY

I met a son donating to his mother. I met another mother whose son is donating to her daughter so she has two kids to worry about. I thought: I am lucky to be healthy. I am lucky that this hospital is only one hour from my home. I will be very lucky if I can help someone.

IMPRESSIONS OF MY DAY

I found every staff person helpful and professional. If you look lost in the hallways (story of my life) people who don’t even know why you are there give you directions without you even having to ask. When the staff doing the various tests looked on my chart and saw I was a donor they all said “Great!” and asked me about it.

I hadn’t realized that donors have a separate coordinator and advocate so we have people dedicated just to us and the recipients have people dedicated to them. This helps any conflicts of interest. The ultimate goal is healthy people on each end, not to just perform transplants. I had a list of questions (see below) and most of them were answered without me having to ask. I was treated like a person and not an abstract donor.

The day started with a donor telling us about his kidney donation to his uncle . He had a very positive experience and was he was frank about what to expect. The list of questions (see below) says to ask to talk to a donor who had the procedure at the same hospital you will be going to so U of M was all over that.

WILLING DONATION

Willing donation was the BIG theme of the day. They want donors not to feel coerced or pressured in any way. They kept stressing that you can back out even as they are wheeling you into the OR. They give you a “face saving” medical excuse out of donating if you need it. They want to make sure you are physically ready and to protect your health in the future.   They want to make sure you are psychologically prepared.

THE TESTS

First I had a chest xray which was a breeze except for the nipple marker stickers you have to put on. OUCH when you remove them–ha ha. I had blood drawn. No big deal. I was a bit taken aback when I saw the five vials and on the third vial the phlebotomist said “Gee, your blood flow just slowed down” but then it was rolling again.  Urine sample well, you know. They have you drink tons of water the day before and day of so no problemo. One amusing thing, the technician made it sound like I had to run the urine sample up to the lab because they needed it fast. I thought: “PLEASE tell me I don’t have to carry this baggie with my urine in it around this hospital and I will surely get lost and have to ask for directions while holding this embarrassing bag. ” But they ran it up there. Whew. The EKG was a breeze, it took them longer to put the electrodes on than the actual test and it was 10 minutes tops. For some reason the EKG technician and I were talking about the laparoscopy scars (which are minimal) and I said good thing I don’t wear bikinis anyway. Eek,  the world doesn’t need to see my fat ass in a bikini! The Cat Scan was easy. The machine is open like a donut so no closed in feeling. I find humor in EVERYTHING. There was a picture on the Cat Scan machine of two faces. One looked like a smiling face and one looked like it was puking. I HAD to say like a fool: “Why does that picture look like a guy that is going to puke?” The technician was kind to the idiot door. “That means breathe or not breathe when the machine is taking the scan.” AH. But it really looked like a smiley face puking.

The tests weren’t bad. I didn’t eat for 24 hours. The cat scan requires nothing in your stomach for several hours. I could have eaten until 10:00 this morning but I didn’t want to chance anything.  Not eating is worse than giving a kidney… HA HA HA!!! I pigged out at Zingermans after yum! I am now in a food coma.

THE CONSULTATIONS

The Nephrologist, Surgeon, and Social Worker met with me one on one. They were all very nice, spoke frankly and readily answered my questions.  Their focus was on this being OK for me physically and emotionally both short term and long term. I asked the surgeon if they ever have to switch to the open surgery vs. the laparoscopy but this is rare. The actual procedure is about two hours (faster than I thought) but with prep etc. 3-4 hours. Oddly enough, the most common complication is bloating and constipation. As she put it, the colon is the prima donna of the body and it hates to be moved. (They move the colon and and the spleen to get the kidney out) So then colon has to be coaxed back into action but if you keep up your laxatives etc. you will do well. They look at the scans to decide which kidney to take. Usually the left because of the adrenal veins and arteries being longer but sometimes the right.

ADVICE TO DONORS ON THE EVALUATION PROCESS

  • Bring someone with you. even though you aren’t woozy or anything it’s nice to have someone to talk to and in my case, help me navigate. It is comforting. Thanks again Kris!

  • Read as much as you can about donation and the medical tests you are going to have. (See resources below) It really helps to know what the tests are like and why they are conducted. Also, when you talk to the surgeons nurses and others you will know what to ask them.

  • Be proud of yourself even if it doesn’t work out. A lot of people wouldn’t even consider that you are doing.

READ MORE

Go to List of Resources on Kidney Donation

 

May 8, 2010

Psychology of Donor and Recipient

The psychology of being a kidney donor and kidney recipient is more complex than I anticipated.  I really have a strong premonition that everything will be fine and the evidence in articles backs that up.   The statistics are overwhelming in how safe it is, but emotion has little to do with facts.

Surprisingly, one difficult thing is too much praise. Of course it’s nice to hear a few things like:  “It’s great that you are helping someone” but too much praise can be hard. I am actually acting in my own self interest because I want Jackie around. I think it must be hard for the recipient to hear a lot of praise heaped on the donor too. It isn’t the recipient’s fault that they are in the postion of having to be the “donee” vs. the “donor.”

I also feel bad that Jackie has guilt about being a recipient. I think it is MUCH more difficult to be the kidney recipient that the donor. First the recipient is ill with kidney disease and has to face all of the physical ramifications of that. Dialysis is NO picnic. Secondly there must be a lot of psychological hurdles. Why do I have to have this disease? Why do I have to be in the position of having to accept an actual body part from someone else? Why do I have to cope with my own surgery and know that the donor is having major surgery too? That can’t be easy.

Jackie is making progress with her feelings and wrote a great blog on it.

What makes me feel better is reading donor and recipient stories. In story after story the recipients get new lives and the donors recover quickly and feel great about the donation.  All will be well!

Go to List of Resources on Kidney Donation

May 3, 2010

A Short History of Kidney Transplantation

  • Next Wednesday I go to U of M for my first big battery of tests! I will have labs, a chest x ray, an EKG and a Cat Scan of my kidneys.

Chad the transplant coordinator sounded very nice on the phone. He told me some very interesting things. I asked if the recipients and donors meet or if people preferred anonymity. (I am fine with whatever my recipient wants.) He said that often people like to meet but they arrange that AFTER the surgery. Makes sense to me because of the emotional impact for those involved.

I had it in my head that all four of us get surgery the same day but Chad told me sometimes the way things line up they may find a donor for Jackie earlier than my recipient is found.  Jackie could have her surgery first then when my recipient is located I would have mine later. It can get complicated matching the blood types and the antibodies.

I am anxious to get the ball rolling!

A Short History of Kidney Transplantation

  • 1954  Doctors at Boston’s Peter Bent Brigham Hospital perform the first successful long-term transplant of a kidney between identical twin brothers.
  • 1962  First kidney transplant using cadaveric donor at Peter Bent Brigham Hospital in Boston.
  • 1980s Survival rates improve with the use of cyclosporine.
  • 1984 National Organ Transplant Act (NOTA) establishes a nationwide computer registry for organ donation and prohibits buying or selling of organs.
  • 2001 The first paired exchange kidney transplant in the U.S. is performed at Johns Hopkins.
  • 2009 Johns Hopkins Hospital successfully completes the first eight-way, multihospital, domino kidney transplant.
  • The future Chains of altruistic kidney donations are increasing as computers and kidney exchange programs help match donors and recipients more quickly.

Some famous people who had (or have) kidney disease:

  • George Lopez
  • Steven Cojocaru
  • Neil Simon
  • Barry White
  • Jean Harlow
  • James Michener
  • Erma Bombeck

P.S.  My friend Jeff told me this interesting story.  Back in 1965 his future father-in-law Robert needed a kidney and Robert’s sister LaVern was the donor. When they did the surgery they found out Lavern had three kidneys!

Go to List of Resources on Kidney Donation

April 27, 2010

Nephrectomy: AKA Kidney Removal

This is a wonderful video from Tom who was a donor for his friend Doug. He explains the surgery and the donation process in a touching and humorous way. I just loved it.

There are basically two ways to remove a kidney, the laparoscopic method and the open method. The open method used to be the only way but medical science has advanced and the laparoscopic method is often an option.

The laparoscopic method is less invasive and usually has a faster recovery period. In laparoscopic radical nephrectomy the kidney is removed using narrow instruments placed through several small incisions in the abdomen after inflating the abdomen with gas. A telescope and small instruments are inserted into the abdomen through the incisions, so the surgeon can dissect the kidney without having to place his/her hands into the abdomen. The kidney is removed intact through an extension of one of the existing incision sites. It takes about 3-4 hours to do.

Open Nephrectomy is performed when the patient can’t undergo the laparoscopic method due to weight or other problems. A 6–10 inch incision is made on the side or front of the abdomen. The blood vessels connecting the kidney to the donor are cut and clamped, and the ureter is also cut between the bladder and kidney and clamped. The kidney is removed and the vessels and ureter are then tied off. It can take up to three hours.

The left kidney is preferred because of its longer renal artery. Sometimes the right kidney has to be taken due to various issues with the left. Depending on assessment the surgeon decides which kidney to take.

Go to List of Resources on Kidney Donation

April 19, 2010

What is Paired Kidney Donation?

OVERVIEW

I am finding that a lot of people don’t know what paired kidney donation is, even the nurses at the cardiologist’s office hadn’t heard of it. So basically it works like this:

I am blood type A and Jackie is blood type B. I can’t give a kidney directly to her because we are different blood types. So the transplant team will organize four people. They will find a person who needs a kidney who has blood type A and a person who wants to be a kidney donor who has blood type B. All four of us will have surgery at U of M hospital. My kidney will go the person with blood type A.  Jackie will receive a kidney from the person with the B blood type. Sometimes the four surgeries are simultaneous but with paired donation one pair sometimes goes first. In our case since this is “Lets Make a Deal with Kidneys” U of M won’t take my kidney unless Jackie has already received hers or has her surgery the same day as me.

I think this is a very special process because it allows the donor to help their loved one indirectly and someone else directly. In a way it doubles the gift.

HISTORY

Paired kidney donation was pioneered by the Johns Hopkins Transplant Center.  The first pair exchange transplant in the U.S. was in 2001. The Paired Donation Network began as a state-wide paired donation consortium in Ohio.  The PDN now includes over 80 kidney transplant programs in 23 states. New programs enter the PDN weekly, increasing access for patients to paired donation programs across the United States.

Paired donation used to take place in one hospital on one day but has now advanced. In 2009 Johns Hopkins and several other hospitals successfully completed the first eight-way, multihospital, domino kidney transplant. The transplant involved eight donors, 3 men and 5 women along with eight organ recipients, 3 men and 5 women.

THE FUTURE

Paired kidney donation is now taking place all over the United States, at times with chains of donors and recipients across different hospitals. Breakthroughs are even being made in organ transplantation involving people who have different blood types. This is an exciting chapter in kidney transplant history. Now if only more people would donate!

READ MORE

Go to List of Resources on Kidney Donation

April 11, 2010

How to Get Information on Kidney Disease and Kidney Donation

 The National Kidney Foundation is a great place for information on kidney disease and kidney transplants. They have a section on paired kidney donation, questions and answers on living donation and much more! Living Donors Online has a lot of information too.
 
The University of Michigan Transplant Center where Jackie and I will be having our surgery has a lot of good information too.  I just went to the site and it says:  “Together your kidneys filter about 50 gallons (189 liters) of blood every 24 hours!”  Wow. I had no idea. They explain their program of paired donation.

I work in a library so I am lucky to have great resources on hand.  Check with your local library to see if you have access to any of the Gale Health and Wellness databases. They include articles from medical journals and medical reference books, pamphlets and much more. If you are a Michigan resident go to mel.org.

I like reading about it because I will know what to expect. The more I know the statistics on the safety of donation the better I feel. I am not taking this lightly–I know it is pretty big surgery–but I feel confident and determined. I hope it can be done  laparoscopically, I think my odds are good for that and not the traditional incision way.  I guess the surgeons don’t always know until they begin.

I found the answer to this question, they usually take your left  kidney. I wonder why? Need to look that up.  

Go to List of Resources on Kidney Donation

April 5, 2010

How You Can Help People with Kidney Disease

Donate a kidney! Living donation is down and many many people are waiting for kidneys.  There are statistics on organ donation  from the US Dept. of Health and Human Services. Also  Organdonor.gov  had these statistics:

  • About 14,000 kidney transplants are performed each year. Just over one third of transplanted kidneys are from living donors.
  • At any point, about 55,000 people are on the waiting list for a kidney transplant.
  • Every year, over 3,000 people die while waiting for a kidney transplant.

Donate money. Of course donating a kidney may not be possible for you.  You can donate money to the National Kidney Foundation.  Also, The University of Michigan Transplant Center accepts donations.

Another way to help: go on a kidney walk , lead a kidney walk team or donate to a team!

Go to List of Resources on Kidney Donation


March 29, 2010

Kiersten and Theresa’s Story

 

I work with a fun gal named Kiersten who has polycystic kidney disease like Jackie.  In 2003 her best friend Theresa gave her a kidney. Kiersten has done very well with her transplant and has a great outlook on the whole thing. This is their story which speaks for itself. I removed some details for their privacy but this article ran in our local paper:

*************

Theresa said she never thought twice about donating a kidney to her best friend.

Theresa  and Kiersten, both 33, have been close friends for more than 25 years.

They have been there for each other through good times and bad since they met in grade school.

“She helped me learn about unconditional love,” Theresa said of Kiersten.

So when Theresa… found out she could donate the kidney Kiersten has been awaiting for more than five years, there was no hesitation.

“This is something I can do and still be around to see the benefits,” she said. “I can live with one kidney.”

Kiersten was diagnosed with polycystic kidney disease in 1997.

The disease is characterized by the growth of fluid-filled cysts on the kidneys that reduce the organs’ function and can lead to kidney failure.

“When I first found out I had it, I had 27 percent kidney function,” Kiersten said. “The specialist put me on the list for a kidney donation because she knew things would keep getting worse.”

Last August, with her kidney function down to 4 percent, Kiersten started on home dialysis.

“I’ve never had a cyst burst or felt ill,” Kiersten said. “The only symptom I’ve had is that I’m tired, but not abnormally so. I’ve worked 40 hours a week as long as I can remember and I don’t see any reason not to do normal everyday things.”

Without the transplant, however, her ability to lead a normal life likely would be affected eventually.

There was hope when it was learned Kiersten’s husband, Michael, whom she married two years ago, had the same blood type, but further tests showed his kidney would not be a match for her.

That’s when Theresa agreed to be tested.

“I was familiar with transplants because my father had a liver transplant in 1998,” Theresa said. “But I didn’t know that a person who was not blood-related could donate a kidney until Mike was tested.”

Last November they got the news that Theresa could be the donor. Surgery is scheduled for Monday at the University of Michigan Hospital.

“If I could do this for her I wouldn’t think twice about it and, from her reaction, that’s the way she felt, too,” Kiersten said. “She’s just doing what she felt was needed.”

Theresa ‘s family moved…but the 45-mile distance between them didn’t dull the friendship.

While they say they have seldom argued, there is one big area of disagreement. Kiersten is a Michigan State University fan while Theresa favors the University of Michigan.

“She was a Spartan fan until she moved…” Kiersten said. “I think they brainwashed her down there.”

Go to List of Resources on Kidney Donation

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