Adventures of a Kidney Donor

July 20, 2012

Anniversary of One of My Happiest Days Ever

Filed under: Kidney Heroes — by anne315 @ 9:20 pm
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Tomorrow marks the second anniversary of my dear friend Jackie getting her kidney! I can’t believe it.  Time has flown. She has been through so much in the past two years because not only did she have a kidney transplanted IN, she also had to have one of her original kidneys removed.  So two surgeries in a short space of time–eek. It is rare, most kidney recipients actually live their lives with three kidneys. The old ones atrophy and normally don’t cause trouble.

All that is behind her now, and she is free of dialysis. Hooray! Jackie has been my dear friend since we were thirteen. I am so proud of her courage. Looking forward to many, many more years!

Go to List of Resources on Kidney Donation

*The picture isn’t really of us when we were young but it’s a good symbol.

September 12, 2010

Polycystic Kidney Disease

Filed under: Medical — by anne315 @ 7:43 pm
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Jackie has Polycystic Kidney Disease (PKD. ) Her grandfather, mother and uncle have passed away from PKD and its complications. Other members of her family have been diagnosed with it.  PKD SUCKS! The only remedy for PKD is to get a new kidney.

The PKD Foundation has a lot of info. (see below) I was astonished to learn that PKD affects an estimated 1 in 500 people. It occurs in any sex, age, race or ethnic origin.

Autosomal dominant (ADPKD) is one of the most common life-threatening genetic diseases…It does not skip a generation. There is usually a family history of ADPKD.  Parents with ADPKD have a 50 percent chance of passing the disease on to each of their children.


 A normal kidney is the size of a human fist and weighs about a third of a pound. However, with the presence of PKD, cysts develop in both kidneys. When many cysts develop, the kidneys can increase in both size and weight, sometimes weighing many pounds each.  There may be just a few cysts or many, and the cysts may range in size from a pinhead to the size of a grapefruit.

The Gale Encylopedia of Medicine (see below) defines PKD:

Polycystic kidney disease (PKD) is one of the most common of all life-threatening human genetic disorders. It is an incurable genetic disorder characterized by the formation of fluid-filled cysts in the kidneys of affected individuals. These cysts multiply over time. It was originally believed that the cysts eventually caused kidney failure by crowding out the healthy kidney tissue. It is now thought that the kidney damage seen in PKD is actually the result of the body’s immune system. The immune system, in its attempts to rid the kidney of the cysts, instead progressively destroys the formerly healthy kidney tissue.

Famous People who have or had PKD:

  • Steven Cojocaru
  • Neil Simon
  • Erma Bombeck
  • George Lopez (?) Not confirmed but he is described as having genetic kidney failure, PKD is the most common cause of genetic kidney failure

 To read more:

**Requires a Michigan driver’s license or check with your local library.

Go to Resources on Kidney Donation

August 30, 2010

Living with One Kidney

When a kidney is removed, the remaining kidney will increase in size to compensate for the loss of the donated kidney. Some people are alarmed at the fact that I will be living with just one kidney, but actually kidney donors live as long or longer than people who have two kidneys.  A lot of research has come out lately showing the longevity of donors.  There are slight risks of higher blood pressure and Proteinuria (excess protein in the urine.)

Health Recommendations: Try to live as healthy a life as possible but pretty much the same rules apply for donors as non-donors. Eat a healthy diet, especially avoiding too much salt to protect your blood pressure. Drink alcohol in moderation. Exercise.  Avoid ibuprofen and take things like Tylenol and aspirin instead. Tell your doctors that you are a kidney donor because you should have a urinalysis each year to monitor your kidney function.

Mental Health Recommendations: A major study conducted on kidney donors found that less than 1% regretted the decision but 3 to 10% reported depression. Depression can come from fatigue after surgery, a major letdown after a big life event and even grieving over the loss of a major organ. Also, learning the outcome of the recipient’s surgery can have a big impact on the donor. If the recipient rejects the kidney it can cause great sorrow in the donor. Donors are encouraged to share their experiences with others through blogs (check!) and other social media, to connect with other donors and to seek professsional help if necessary.

No-Nos: No pregnancy until six months after donation. (No thanks at my age!) Check with your doctor but usually no heavy contact sports like boxing,  football, skydiving etc. (Oh crap, no skydiving?) No combat. (Darn!)

Watch Out For:

  • Insurance companies trying to deny you because you have a pre-existing condition. I THINK the new healthcare laws (Thank you President Obama!) prohibit that but the health professionals are still figuring that out.
  • Flack from your employer for time off. Have your donor advocate or coordinator from the hospital talk to them. We learned at our donor meeting that a lot of employers back off after your advocate or coordinator gets involved. We need LAWS to protect organ donors.

When the book group I facilitate @ work found out about my kidney donation they were very supportive. Gretchen, a member of the group, told me that she has been living with one kidney for many years because she had to have one removed when she was a teen. She said: “If this helps” and told me about it. Yes Gretchen, thanks, it does help! Nice to hear things like that.

The research on living life with one kidney is very reassuring:

**Requires a Michigan driver’s license or check with your local library.

Go to List of Resources on Kidney Donation

August 21, 2010

Laparoscopic Kidney Removal

I have passed the evaluation by the psychiatrist (or “fizz-a-key-a-trist” as Ricky Ricardo used to say, ha ha)  so now the wait for the kidney donation is on. I guess it might be faster when only two of us are involved.  In the paired donation program four people had to be organized.

The picture on the left shows how small the scars are after someone has had laparoscopic kidney removal.  Pretty amazing.  (I WISH my abs will look like this afterward! Can they do some liposuction when in there???) A lot of people don’t know that most kidneys are removed by the laparoscopic method rather than the older open method that involved a large incision on your side.  You have to sign an agreement before surgery to authorize the open method if the surgeon has to switch to it, but that is rare. Usually you only have to have the open method if you have weight issues or have had gastric bypass surgery.

The surgery involves three or four small cuts in your belly and side. The surgeon uses tiny probes and a camera to do the surgery.  At University of Michigan a three arm robot is used that holds a three dimensional camera in one arm and a dissecting instrument and grasping forceps in the remaining arms. The instruments are advanced into the abdominal cavity through keyhole incisions.  Dissection of the kidney is performed by the surgeon who commands the tips of the instruments to replicate wrist and finger motion. At the time of kidney removal a small incision is made in the lower abdomen and the kidney is placed in a bag and removed for preservation and transplantation.

A good description I saw said that the surgery is worse than a gallbladder removal, better than a C-section.

This clip http://www.youtube.com/watch?v=3jpBA8y6-cY shows how laparoscopic kidney removal is done but it is animated so it is easier to watch than a real surgery. I have watched real surgery too. Interesting, but don’ t watch right after you eat. How do surgeons cope in the hospital cafeteria? They must become used to it. Nephrologists NEVER order steak and kidney pie I bet. HA HA.

Go to List of Resources on Kidney Donation

August 6, 2010

A Curveball But in a Good Way

So…the story is, when Jackie got her kidney it was from someone who had passed away. The Paired Kidney Donation program we were in involves four living people. Right away we suspected that she had coincidentally gotten to the top of the OTHER donation list she was on. Yes, that is what happened. The most important thing OF COURSE is that she got a kidney and she is doing GREAT! Hurray!

So now on to plan B.  I called my transplant coordinator and he said that it was cool that I stepped up to help but now I wasn’t needed in the paired program with Jackie because she got her kidney a different way. I asked him if I could still donate to help someone. He said that if I wanted to, I could participate in what is called a  “non directed altruistic donor”  program.

If I match someone in the paired exchange database who needs a kidney, I donate to that person. Then the donor that they brought with them to the program (who doesn’t match them)  agrees to donate their kidney to someone else in the database. This creates  an “altruistic donor” chain. University of Michigan has a chain now that will hopefully result in a fifth person being transplanted as a result of one altruistic donor!

Why am I doing this? Some people are trying to talk me out of it. I know they are worried but when you read the facts about the laparoscopic method of the surgery, the normal life span of donors and the great need for kidneys it is an easy decision for me. If I can do for someone what has been done for Jackie, I am ready! It’s a wonderful thing to give someone a whole new life free of dialysis. I still can’t describe how wonderful it is to see Jackie walking around with her new kidney.

I have to go back to University of Michigan to talk to a psychologist. I already talked to the social worker when I was there before so they could make sure that I am not being coerced or paid and that I am psychologically up to this. Since this is a different program, their rules require that I go through that interview again. No problem.

I told Jackie and the social worker months ago that even if I wasn’t giving a kidney to Jackie directly or indirectly (turns out I am not) I would still donate because of the great need. Why should someone die waiting if I can help? Jackie told me I was still part of the process of her getting a kidney, psychologically if not literally. SHE deserves the credit for being so brave and taking on that big surgery on such short notice, but I am glad we are in this together.

Here are some definitions from the National Kidney Foundation:

A NEAD™ chain (Never Ending Altruistic Donor chain) begins with one non-directed (altruistic) potential donor. In this program, the non-directed donor gives to a person waiting for a transplant, and that recipient’s willing—but incompatible—donor gives to another person waiting, and so on. Each living donor in this system gives to a stranger, and the chain of donors is kept going as long as possible.

Non-directed Donors. Someone who donates a kidney to anyone in need of a kidney transplant. Non-directed donors are not related to or known by the recipient, but make their “gift” purely out of altruistic motives.

For more information on altruistic donation go to:

Go here for Resources on Kidney Donation

August 3, 2010

Jackie is Doing Great!!!!!

Filed under: Kidney Heroes — by anne315 @ 12:45 pm
Tags: , ,

I am so happy.  At her weekly checkup today they said that Jackie’s bloodwork was “awesome.” Go to her blog to read her wonderfully written chronicle of events. This is what it is all about.

July 29, 2010

News from Jackie!

Filed under: Kidney Heroes — by anne315 @ 5:15 pm
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A short post to say that Jackie has been blogging about her kidney transplant and as usual she has a wonderful way of capturing the story. Go here to read part one.

July 25, 2010

One of My Happiest Days Ever

Filed under: Kidney Heroes — by anne315 @ 10:00 am
Tags: , ,

I went to U of M yesterday to see Jackie.  I was bowled over by how GREAT she looks. Only three days after her transplant–it is amazing. She doesn’t look like she had major surgery!  She is doing great.  I kept telling her: “You sound and look like yourself.” I don’t know how else to explain it. I have read about how kidney recipients start feeling better almost immediately but when you see it in person with someone you love–there are not any words to describe how great it is. Her husband Doug told me that while dialysis keeps you alive it is nowhere near the function of an actual kidney.

Jackie can’t get over the fact that she doesn’t have to have dialysis. That was three or more hours per day, three days a week. Doug went to EVERY dialysis session too so both of their lives have completely changed. Their lives will be so much more free. She said a long time ago that when she got a kidney one of the first things she wanted to do was to take a trip with Doug because she would no longer be tied down by dialysis.

We were marveling at seemingly little things. Jackie can have more fluid now such as a whole smoothie instead of a small sample of one! She can also have a Diet Coke once in awhile (instead of clear pop.) She actually had a little mini can of Diet Coke when I was there and I loved seeing her drink it.

Jackie will tell you the story of how she got her kidney so fast. It is very funny and touching. We are still reeling from the events–she went from minding her own business at home to kidney surgery in about seven hours.

The kidney is doing what it is supposed to do and she comes home today! She will have follow up appointments this week and in the coming weeks as they tweak her anti-rejection drugs. She has a list a mile long of meds to take and when the nurse came in to test her on her meds she knew EVERY answer.

When the social worker asked me two months ago why I was donating a kidney, I told her it was to see Jackie walking around with her new kidney. Seeing it in real life (and so soon!) is unreal and wonderful. I am so happy I could cry. Oh wait, I did. I was trying not to blubber in front of Jackie but I slipped twice. This was one of the happiest days of my life. Really.

*The picture isn’t really of us when we were young but it’s a good symbol.

July 16, 2010

Making Organ Donation Easier

Good news from our (Michigan) Secretary of State’s office! Our SOS proposes to add a check box on Michigan tax forms so people can more easily join the Michigan’s Organ Donor Registry. I applaud that. I have to say, I am a big lefty and usually don’t see Republicans stepping up on issues like this but Secretary Land has. There are no Republicans or Democrats when it comes to our organ shortage crisis, just people in need and people who can help.

If you live in Michigan, please sign up!  if you live elsewhere, check out your state’s registry. I talked to Jackie about this and we think that if our blogs do nothing more than get more donors to register we will be very happy!

Here is the press release:

Land proposes expanding Organ Donor Registry with tax form checkoff

July 9, 2010

Residents would get another way to give gift of life.

Michigan residents wishing to sign up as organ donors could simply check a box on their annual tax form, under a proposal offered today by Secretary of State Terri Lynn Land.

“This will greatly complement our ongoing efforts to encourage organ donation,” said Land, a longtime champion of the cause. “It provides residents with another fast, convenient way to sign up. It also allows us to reach every Michigan taxpayer at virtually no cost, which is especially important in these lean fiscal times. The need for organ donors continues to grow. This is an easy, cost-effective way to give the gift of life to the thousands of our friends and neighbors statewide who are in need.”

Tax filers would have the option of marking a box that allows their names to be added to Michigan’s Organ Donor Registry. It would be similar to the current section of the form that asks whether filers want a portion of their taxes to go to the State Campaign Fund.

“There are other advantages as well,” Land said. “It doesn’t force people to make immediate decisions about organ donation. They can think about it before filing their tax return. It also gives them time to discuss their wishes with family members which is always a good idea. The tax return even provides a permanent record of the donor’s decision. I look forward to working with the Legislature so that potential organ donors can enjoy this convenient option as soon as possible.”

Signing up on the registry only takes a minute. It can now be done online at Michigan Secretary of State or at any Secretary of State office.

Land continues to actively promote public awareness of the need for organ donors. She and other advocates partnered again this year to celebrate Donate Life Month in April. The observance included Buddy Day, during which more than 400 volunteers visited Secretary of State offices to encourage organ and tissue donation. Due in part to these events, about 145,000 names have been added to the donor registry so far this year.

Land also created the Shining Star award in 2005 to recognize those who show exceptional dedication and extraordinary effort in furthering the cause. More than 16 individuals and organizations have been honored.

Under Land’s leadership, Secretary of State offices participate in the “Tell Us Now” campaign. The initiative features counter mats and other informational items that let customers know they can sign up for the organ donor registry.

Residents who sign up as donors receive a heart sticker for the front of their driver’s license or state identification card. The sticker quickly alerts medical personnel and emergency responders of the cardholder’s wishes. Land reminds residents to sign up again if they enrolled in the past but don’t have a heart logo on their license.

Visit Michigan Secretary of State for more information about organ donation or other Secretary of State services.


Copyright © 2010 State of Michigan

 

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

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