Adventures of a Kidney Donor

July 9, 2010

Yippy Skippy!

Chad, my transplant coordinator from University of Michigan hospital called and the labs I did on Tuesday showed good results! They were a little concerned when I had my big tests in May about some elevations in liver enzymes. They weren’t super high but higher than they should have been for someone of my weight. Numbers like that can mean a fatty liver. Anyway, the numbers are good now.

He said, “Continue to do what you have been doing” and I had to laugh to myself because I am supposed to be following a low-fat diet and I messed up with Fourth of July hotdogs.  I also had a major slipup at my niece Emma’s open house because our friend Kim makes the best cheesecake ever. Seriously, her pina colada cheesecake is possibly the most delicious thing I have ever eaten!Giving up a kidney is easier than the lowfat diet–ha ha.

I was a little stressed about the liver enzymes somehow kicking me out of the transplant and I would have been HEARTBROKEN. I feel better now. Things are moving along! Hooray!

 Go here for Resources on Kidney Donation

June 24, 2010

Sonia: An Inspiration!

My aunt Deb and my aunt Janet’s friend Sonia is doing great after her kidney transplant! She is in inspiration to me. She put this message on Facebook only ONE day after her surgery. Her donor is named Mahama:

“I want to thank all of you who have been praying and keeping positive thoughts for me. I am still in the hospital one day after my surgery and already feel like a new person. God is great and I am thankful for all the wonderful people He has brought to my side during this time. In particular for my angel Mahama may God Bless her always.” –Sonia

I have read that recipients start feeling better almost immediately. I CAN’T WAIT for that moment with Jackie. Wonderful.

Sonia is in need of financial help since her insurance DOES NOT cover the cost of her medications, travel to Phoenix and aftercare. Any possible donation you could manage would make a world of difference for her. Donations can be made directly to a Wells Fargo Bank (or Wachovia on the east coast). The acct # is 9422873969 For The Benefit of Sonia Rodriguez. You can also send directly to her at Alchemista, 1250 S. 4th Ave, Tucson AZ 85713 No donation is too small! I hope you can help. Thank you!

For those of you living in Tucson or Phoenix, there will be a fun dinner and show at The Westward Look with discounted rooms for anyone who wishes to spend the night. An invitation.

P.S. I swiped this pic of Sonia as a baby off of her Facebook page. CUTE!!!

Update June 27 Sonia posted this today on her Facebook page:

Good Afternoon EVERYONE! I’m finally at the hotel in Phoenix and recuperating as best I can! The incision is a doozy but worth every inch and then some. Life is wonderful! Not only has a wonderful Angel saved my life but God brought back into my life dear friends and family. He gave me incredible Doctors, Nurses and everyone at the Mayo Clinic are truly God’s hands on earth.

June 22, 2010

Cojo!

I just finished Steven Cojocaru’s book Glamour, Interrupted : How I Became the Best-Dressed Patient in Hollywood. Very touching and funny.  Appropriately enough I had it with me at the hospital to read between tests the day I went to U of M hospital. I was so nervous that day (not about the tests themselves but about flunking as a donor) that I couldn’t concentrate well so I have been enjoying  reading it at home.

For those of you who don’t know, Cojo is a fashion critic often seen on television on the red carpet at the Oscars etc. On telly he is frank, sassy and funny.  In the book he is all that but also displays a nice depth when discussing his kidney disease and treatment. He doesn’t hold back when talking about the physical and emotional ramifications of kidney disease. I think it’s great for donors and recpients to read. I have been reading a lot from the donor perspective. I need to read more from the recipient perspective.

Cojo was diagnosed with polycystic kidney disease in 2004. His good friend Abby gave him a kidney in January of 2005 but it had to be removed when it became infected with the Polyoma Virus. After the agony of the kidney failure and the stress of undergoing dialysis, a new donor match was found, his mother Amelie.  In October 2005 Cojo received a kidney from his mother. There have been bumps along the way but he is doing well!

Recipient Stories

For more stories: Go to Resources on Kidney Donation

June 7, 2010

A New Kidney for Sonia

My aunt Deb and my aunt Janet have a dear friend Sonia who is getting a kidney transplant and Sonia needs some assistance. Here is the letter they sent today:

I have attached photos of our dear friend Sonia and an invitation. Sonia has endured dialysis for 4 years now and will receive a kidney donation June 21st. She is a hard-working business owner with insurance. Insurance will not cover many many costs such as hotel and food costs while she and her donor get all the pre-surgery testing. Sonia and her mother have to stay in Phoenix near Mayo Clinic for 6 weeks post surgery. She will have $2000/month medication costs.
Any of you who have visited us in Tucson have either visited her wonderful store, Alchemista, or benefitted from her wonderful homemade soaps, shampoos, lotions, or essential oils.
 
Any possible donation you could manage would make a world of difference for her. Donations can be made directly to a Wells Fargo Bank (or Wachovia on the east coast). The acct # is 9422873969 For The Benefit of Sonia Rodriguez. You can also send directly to her at Alchemista, 1250 S. 4th Ave, Tucson AZ 85713
 
For those of you living in Tucson or Phoenix, there will be a fun dinner and show at The Westward Look with discounted rooms for anyone who wishes to spend the night. I have attached an invitation.
 
No donation is too small! I hope you can help. Thank you!
 
Deb and Janet

June 1, 2010

We Are On Our Way!

Whew. I think I made it! After whining about not hearing from The University of Michigan, a letter was waiting for me at home.  They want to run my labs again (due to slightly high LDL and liver enzymes) but my left kidney looks good for donation!

It will take awhile to get all four of us lined up and ready but we are on our way! I remember sitting in the waiting room years ago with Doug, Justin, Michael and other family members when Jackie was having her grafts put in. I was thinking (and I bet they were too): “We have to do whatever we can do to get Jackie a kidney.” This is a BIG step toward that day.
Woo-hoo!!!!! 

Go to Resources on Kidney Donation

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 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

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