Why Should You Register as an organ donor?

Almost 120,000 organ donors are needed.

I signed up as an organ donor years ago. Most likely, it was when I got my license. I really didn't think about it. My parents and friends were probably registered.

Fast forward 40 years. Organ and tissue donation became personal.  My cousin was in kidney failure and needed a transplant.

Immediately, I ruled myself out because I thought that I was too old (learn why I wasn't on my "about" page).

I checked my license to look for a note about being an organ donor. Technology advances have replaced the form on the back with a scannable fingerprint. I was probably still on an organ donor registry, but had moved and married. Would an address and name change make it more complicated? If something happened, and no one could speak for me, would someone take the time to scan my license and know my wishes?

I visited my driver's license site and learned that a small red heart icon is printed on the front of organ donors' licenses. Mine didn't have one, so I ordered an update. I also made sure to tell my family and friends my wishes. As I started talking about this, I learned that several people I knew had received tissue transplants. My grandmother had cornea transplants, a friend had a new ACL and another had plastic surgery after serious burns.

However, I was shocked to learn that many people die everyday because there aren't enough life-saving organs.  According to DonateLife.net, "95% of Americans are in favor of being a donor but only 54% are registered." Click here to visit Donate Life's website.

Since my cousins' kidney transplant, she has become a grandmother.   Now, she takes care of her grandson.  She looks great and feels incredible.

On the other hand,I have a friend who has been dialysis for over 5 years.  He is exhausted and is now on disability.  Three times a week, he spends hours hooked up to machines.  Dialysis doesn't last forever. He needs a transplant soon.

TWEETABLE
"95% of Americans are in favor of being a donor, but only 54% are registered." DonateLife.net  (Click to tweet)
 
What do you think can be done to help to meet the need for more organ donors?

When your friend needs a kidney

This is Terry.  I met him through a friend of mine.  She mentioned that Terry has been on dialysis for 5 years and needs a kidney.

Terry's story is common.  Due to a genetic disease, PKD (Polycystic Kidney Disease), his kidneys are failing.  His life has dramatically changed from working as a truck driver, riding his 2003 Harley and hanging out with friends.

Now, he spends 3 days a week, four hours each day, hooked up to a dialysis machine.  That won't last forever.  Even though there have been a lot of advancements in dialysis, time will run out.  Dialysis is a temporary fix.  It's benefits come at a cost.  You don't hear a lot about people on dialysis dying of kidney failure.  Many times, these patients die because of the tremendous stress on their heart.

The only way that Terry can regain his strength (He can't even lift 20 pounds anymore) and stamina is with a transplant.  He's done all of the things that his doctors have advised.  And, yes, he is on the waitlist.

Terry's blood type, O, could make him a universal donor (if only he were healthy). However, he can only receive a kidney with someone with Type O blood. The waiting time is long for a Type O kidney from someone is deceased. If Terry gets a kidney from a deceased donor, it will allow him to live dialysis free for an average of 7-10 years. However, with a kidney from a living donor (like I did), the "lifespan" of the kidney can double!    

And here's a sad statistic.  Every day, 18-20 people die while they are waiting for a life-saving transplant.  (Click on my "about" button to learn why I decided to give.)

Some people automatically rule themselves out because they don't have the right blood type. But there is still a way.  If someone began the testing process and "qualified" as a suitable donor, s/he could donate in something called a paired exchange.  Here's a link from the Living Kidney Donor Network (www.lkdn.org) Click here to learn how any blood type could help Terry.

I challenge you to learn more about kidney donation.  Choosing to step forward is a big decision.  It's very personal.  You can find out information about the process at the Piedmont Hospital in Atlanta, GA by visiting this website. Call the Transplant Center's number (888-605-5888) and tell them Terry's information (His name and birthdate 3/26/58). The transplant center can answer any questions that you might have. There is even a screening form on the website.  Again, it's anonymous.  Check it out.  Who knows?  You might even be a good donor candidate.  I was floored to learn that I could donate a kidney at age 54.

I had many questions:

1. Could I afford it? Yes, because the testing, procedure and follow up would all be paid by my recipient's insurance (at no cost to her).  
2. Would I have huge scar?  Most likely no.  Most donors are operated on as a laporoscopy ( 3 small incisions and one a few centimeters long). 
3. Would I have to take medication after the surgery? No. As a matter of fact, I went right back to my normal life. (Well, except for the fact that I became much more grateful for my health.)

The process is anonymous and comes with no pressure from the medical team.  If it's not something that you would consider, inform yourself so that you can support someone who does get tested.  It can also help if you know someone who is waiting for kidney. Someone like Terry.  Just a thought.

Transplant Thursday-So You Are Thinking About Donating

Are you curious about donating a kidney to someone? Welcome. I donated to my cousin almost two years ago.  I would never have considered myself donor material. Most of that is due to the incorrect image that I had of donors. Once I talked with my cousin, I learned that I just might be eligible.

According to the Living Kidney Donors Network, a living donor must be physically fit, in good health, free from high blood pressure, diabetes, cancer, kidney disease and heart disease.

Individuals considered for living donation are usually between 18-60 years of age. (Living donors older than 65 years of age have successfully donated.)

Routine tests are always performed to determine not only the potential donor's level of physical and mental health, but also their compatibility with the patient awaiting a transplant. Results of these tests will determine if someone could donate.

Living donation occurs only when there is informed consent that is freely given. This means, you should agree to be a living donor only after you have been fully educated on the subject, its risks and rewards, and when your agreement to donate is without pressure from other people.

So, if you are the least bit curious, here are 5 important things to know:  Many people say that they are going to get tested, but not all do.  For many, the reasons are the result of a lack of information.

1. Your initial questions can be answered by the hospital's transplant coordinator. Call the hospital where your friend/loved one/etc. is registered. 
2. From the moment that you speak to any of medical professionals until the moment that they wheel you in for surgery (if you choose to go that far), you are under no obligation to donate.   As a matter of fact, every person that is involved in your screening and testing will tell you that. 
3. The testing and transplant is covered under the recipient's insurance at no cost to him/her.
4. Once you pass the initial screening, you will be assigned your own donor transplant team.  They do not meet with/consult/collaborate with the recipient's team.  This ensures that your wishes are honored.
5. Here's my favorite: Most kidney transplant surgeries are done as a laparoscopy.  This means small incisions and great recovery time.

Check back each week for the next installment in Transplant Thursday.  I'll include information about the steps in donating so that you can make an informed decision. In the meantime, write a comment below. Tell me a little about the reason why you're considering donating.  I'd love to hear your story! 

Milestone Monday-Taking Transplant Stories on the Road

My recipient, Denise Brown, and I are approaching the second anniversary of our kidney transplant.  It has been life changing for both of us.  Previously, I shared the wonderful news that Denise has just become a grandmother.  It's a thrill to know that she's healthy enough to take care of her grandson.

This weekend, I had my first official speaking engagement about our kidney transplant journey. Our church's (St. Pius X Catholic Church, Conyers, Georgia) women's group invited me to speak at our Advent by Candlelight program.  It was an honor to be among them and share the transplant journey.

I enjoyed connecting with several of them after the presentation.  Many of them have been reluctant to register as an organ donor on their license. There were several misconceptions.

I was thankful that in addition to information from The Living Kidney Donor Network, I also had material from Donate Life Georgia.

This season, I am grateful for my own health.  Many are not so lucky.  Until there is a cure for kidney disease, I will continue to speak to as many groups as individuals about the critical need for more donors.

What about you? Do you belong to a group that would benefit in learning more?  I would love to talk to you about booking an event.  Click here for my email.  I usually respond within 24 hours.

P.S. Are you registered as an organ donor? If not, click here to learn more.

Wait List for a Kidney Transplant-What Hollywood Doesn't Tell You

Boy Meets Girl. Boy and Girl fall in love. Girl needs kidney. 

Commercial break. 

Boy gives girl kidney. Boy and girl live happily ever after.

Sure would be nice if life was like the movies. The reality is that there is a LOT more to kidney transplant stories than Hollywood, cable or the Tabloids lead you to believe.  But there is hope.

The truth is that the wait for a kidney can be extremely long.  It can be filled with family tension, depression, and financial difficulties.  However, it can also include a stronger sense of community, hope and answered prayer.

If you or someone you know is waiting for a kidney transplant, there are several things that you can do:

1. Stay in close contact with your transplant coordinator.
2. If a living donor hasn't stepped forward, consider developing a campaign to find one. The Living Kidney Donor Network can help you create one.
3. Ask about entering a paired exchange. Living Kidney Donor Network explains paired exchange.

Feeling overwhelmed?  That's normal.  For now, consider signing up for a free newsletter with information about current trends and transplants, success stories and tips on current "Kidney Kampaigns."   

We're Going Live!

Click here Thursday, 9/22 at 12:30 CST to see us live!

 Have Your Donor Find YOU!

For the second time, the AAKP (American Association of Kidney Patients) has invited Harvey Mysel, director of the Living Kidney Donor Network, to facilitate a workshop at their National Patients Meeting at the Nashville Marriot. When I was considering donating a kidney, I learned a lot from Harvey's website.  We're going to go live right before the session gets going. Tune in at 12:30 CST.  I'll introduce you to Harvey and some of the folks involved with the American Association of Kidney Patients.  I also hope to meet some of the folks who, just like you, need to find a donor. 

 There a few spaces left.

Click here to email or call 312-473-3772 to reserve your spot. Ask a friend, family member, or an advocate to attend with you so they could help you with your "Kidney Kampaign." 

Click here to learn more about the workshop.  

Can't make it?  That's okay.  Click here to visit the Living Kidney Donor Network to learn more. 

Have Your Kidney Donor Find You!

In Need of a kidney transplant or know someone who is? The Living Kidney Donors Network & the American Association of Kidney Patients invite you to a complimentary, hands-on workshop!

Thursday, September 22, 2016, 1:00-3:30 p.m.

 at the Nashville Marriot Airport-Nashville Ballroom A-B, 600 Marriot Drive, Nashville, TN 37214

Limited seating, so please register: workshop@LKDN.org

For more information, 

  Click to learn more details. 

How can I ask for a kidney?

Simple? Yes.  Easy? No.  If you are headed for kidney failure, you may feel terrified.  If your doctors recommend that you pursue a kidney transplant, you may feel that it is impossible to ask anyone to consider going under the knife.  Instead of asking, tell. Tell your story.  Begin by letting your friends and family know what is going on.  Many times, this generates interest in getting tested as a possible kidney donor. Keep sharing your story.  Read about the National Kidney Foundation's campaign, #The Big Ask, The Big Give to find out how you can increase your chances of finding a compatible donor. Click here to learn more.