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Ann Lopez

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A Call to Arms for Organ Donation

Posted: 04/20/2012 10:16 am

Today, Donate Life America celebrates National Donate Life Blue and Green Day to inspire people to register as organ donors. It was seven years ago this week that I donated a kidney to my former husband, George Lopez. Giving the Gift of Life, as organ donation is called, has had a profound effect on my own life. I have experienced first hand the elation of a successful transplant but I have also held the hand of those waiting for their own transplant miracle.

Currently, there are more than 112,000 men, women and children on the national transplant waiting list. Each one of these individuals is a mother, a father, a son, a daughter, a sister or a brother, and their illness affects the entire family. Their wait on the transplant list depends on the availability of an organ match. Unless they have a living donor, the average wait on the list is 5 to 7 years. The good news is that about 80 transplants are performed each day in the United States, resulting in 28,535 organ transplants in 2011. Now for the bad news: because so few people pass away under circumstances where organ donation is possible, 18 people die each DAY waiting for a transplant. This hit close to home last year when my daughter and her entire school lost a beloved athletic coach, Coach Q, as he waited for a kidney transplant.

I spend a lot of time at Children's Hospital Los Angeles, where the need for organ transplants is heartbreaking. I recently met Sara, a beautiful, smart and funny 13-year-old girl whose dream is to grow up to be a fashion designer. Unfortunately, Sara had to be taken off the list because she grew too sick waiting for a heart/lung transplant. I was told the odds are that she will not get well enough to be put back on the list. The wait is just too long. Then there is Omar, a precocious 10-year-old, who just had an artificial heart installed so he can stay alive and continue to wait on the transplant list. He is cheerful and upbeat and wants to be a magician. Over in the dialysis unit, Twilight-loving teenagers are surrounded by Team Edward and Team Jacob posters. Each of them is waiting for a kidney so that they will no longer have to be hooked up to a machine for three hours a day, three times a week.

There are 112,000 of these stories, but each of the people behind them have hope. This year, Donate Life America's goal is to register 20 million organ donors in 2012. You can be a living donor like me, or register to be a donor after you are gone. After you have lived a long life, you can save eight lives by being an organ donor. Talk to your family and friends about organ donation and find out how they feel about it. If is the right decision for you, go to www.DonateLifeAmerica.org and register to be an organ donor, or check 'Yes' when you renew your driver's license or ID. Be a donor and save lives.

Today I will be wearing Donate Life's blue and green colors, not only to inspire my friends to be donors, but also for Sara, Omar and the other 112,000 waiting.

 
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01:45 PM on 04/22/2012
In 2002, UNOS implemented a policy allowing people to remain on the list indefinitely, even if they can't undergo a transplant. Now, 1/3 of the kidney list is composed of these 'inactives'. 52% of deaths on the wait list are also inactive.

It's disturbing that Ms. Lopez continues to neglect the risks and dangers assumed by living donors.

- 4.4 living kidney donors die each yr in the US within 12 months of surgery.

- 20% of LKDs experience physical complications.

- 20-30% of all living donors suffer from depression, anxiety, and PTSD. Not a single transplant center offers aftercare or support.

- There are NO national standards of living donor care in the US, only 'voluntary guidelines'.

- There is NO comprehensive LD data. In 2000, the Sec of Health mandated one yr of follow-up on all LDs (2 yrs as of 2006) yet over a decade later, more than 30% are still reported 'lost'. OPTN's own data task force called the database "woefully inadequate" and "useless" for research or analysis.

- Transplant recipients are followed for ten years, and bone marrow donors have a govt sponsored registry. Living donors have nothing.

As the sister of a kidney transplant recipient & friend of a heart transplant recipient, I understand the need for organ donors. But as a living kidney donor and activist, I find the minimization of living donations' risks to be abhorrent and unethical. The public should not be viewed as medical supply. Living donors are people too.
04:46 PM on 04/23/2012
I'm so sorry this has been your experience. I wrote a comment outlining my own experience that was overall positive, like Ms. Lopez's, but HP is having 'technical'issues & not posting it? My surgery was 7/28/2011 at Mt. Sinai hospital in New York City. I feel I was very well informed of all risks and am receiving very good aftercare treatment. I've seen them 3 times since surgery, at 1 month, 3 months & 6 months later for comprehensive testing & follow-up. My kidney function, blood pressure, BMI & overall health are being carefully monitored. I can participate in a free 6 week donor support class for nutrition & exercise support or to just talk & network with other donors. It was not an easy recovery by any means. I had severe to moderate pain for the better part of a month, I experienced a lot of fatigue which I still have occasional episodes with and I have more severe menstrual periods since surgery. Even with all of that I'd do it again if I could, if I had 3 kidneys, I'd give away another. I've had the best support from friends, family, work colleagues & the hospital. It truly is giving the gift of life and I'd recommend the experience to anyone fortunate to be healthy enough to do it.
06:10 PM on 04/23/2012
As a living donor I was given comprehensive pre-surgery psychological evaluation. It is each transplant center's responsibility to clear a patient for surgery. At Cedars Sinai in Los Angeles I had 4 months of physical & psychological testing. All aspects of the surgery were throughly explained to me. And yes, there is always a chance of death with any surgery especially when you go under anesthesia. Knowing ALL my risks and being fully conscious of all the possible consequences to the surgery, I MADE the decision with my eyes open. I had my own team of doctors that made sure that my health would not be at risk by donating. I would not have been cleared for surgery if my health would be compromised on any level. Being a living donor is a voluntary surgery. We living donors are aware of the risks we take to save a life. I was given post- op care through the transplant center. My personal physician moniters my health as he has for 15 years. I have had zero complications due to my kidney surgery. I speak to thousands of living donors each year and 99.9% have no issues. Is there a risk ..of course. But we have been educated of those risks. I never minimize the risk of being a live donor. It is a major surgery. Your comment that "the public should not be viewed as medical supply" makes no sense since the surgery is voluntary.
11:20 AM on 04/20/2012
There are people on the list who are not a "mother, a father, a son, a daughter, a sister or a brother" and they get pushed to the bottom of the list every time. Before we atrt encouraging people to donate, lets do something about the fairness of the selection process. I used to be a donor, checked on my driver's license, and even in the marrow registry. Then I had a friend who got screwed over by the supposedly fair selection process.
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02:51 PM on 04/20/2012
Details, please?
06:20 PM on 04/23/2012
First, everyone is a son or daughter. And next you need to educate yourself about the donor list. The only people that are given any special preference are children under the age of 11. After that the person who is the best match to the organ is picked. If there were more donors there would be more organs available and more people would be matched. The little girl in my article never got a match because the available organs did not match her specific blood type, tissue type etc. This happens too frequently because of the lack of donors. I am sorry for your friend as I am sorry for all the people who do not find a match. My daughter's PE coach died waiting for a kidney. We need more donors so that this doesn't happen.
10:32 AM on 04/20/2012
There'd be no waiting list for cadaver kidneys if there were fewer people who needed them. There's been a treatment available for over 15 yrs that can prevent 90% of kidney failure: http://trishatorrey.com/2008/05/06/conspiracy-theories-reversing-kidney-disease-and-personalized-medicine/ If you know somebody with diabetes or high blood pressure and they still have half of their kidney function left, get them to contact us at www.genomed.com, and we'll keep them off the kidney machine. Acting early is crucial: once somebody has lost more than half their kidney function, it's too late for us to help.