Monday, December 12, 2016

Milestone Monday-Kidney Recipient Becomes World Transplant Games Federation Ambassador

Kidney transplant recipients are making history all over the world.  Here's an article from last week:

Kidney transplant athlete to inspire other patients on road to recovery 
NICHOLAS MCBRIDE  December 9, 2016 Click to see article as it appeared. 
Photo was supplied

Kidney transplant patient Matthew Field, left, at Soldier Field, Chicago, during the All Blacks vs. Ireland rugby game in November. Field was on the of the World Transplant Games Federation ambassadors introduced during halftime.

A man whose life turned around when his sister donated him a kidney now hopes to inspire others.

Matthew Field, 29, spent three years waiting for a kidney, when a transplant from his sister Ruth gave him a new lease on life.

Murray Wilson/Fairfax NZ
In 2011, Field was on dialysis, hooked up to a machine to keep him alive. Five years later he was able to compete in the Australian Transplant Games.

The Palmerston North man went over to compete in September and he came back with six golds.

He is now hoping to inspire others to glory as an ambassador for the World Transplant Games Federation. 

Field was selected as one of the 12 people in the world to become the first ever Fit for Life ambassadors.

The ambassadors were officially launched at the All Blacks versus Ireland rugby match in Chicago during halftime. 

"It just hit you."

Field will cover all of New Zealand and all manner of transplants.
 He will be tasked with finding other transplant patients and helping them be more active, while also raising awareness for organ donation.

It was a bit daunting prospect, but one he relished.
Hopefully it can boost people's quality of life and make people more aware of organ donation. It is proven that exercise helps the organs last longer."

Having been through a transplant himself, Field hoped his experience would relate to others and guide their exercise. For the most part, it was common sense, he said.

Though he had been active before he went on dialysis, post transplant meant starting from scratch.
"It was pretty hard at the start, but every transplant patient is going to have problems early on."

Field said it was a mix of being careful but seeing how far you could push yourself.
Eventually he began to become more and more stable.

For him, overcoming the social anxieties had been another barrier. "Just having the confidence to get back into it."

Being an ambassador was a chance for him to share those experiences with others and hopefully help and inspire some along the way, he said.

What about you? Do you know any living donors?  Want to recognize their efforts?  Let me know.  I'd love to include a post about them.

Thursday, December 8, 2016

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! 

Monday, December 5, 2016

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.

Monday, November 28, 2016

Milestone Mondays-Heart Transplant Recipient and Donor Family Celebrate Twenty Years!

Recently, I was honored to attend Joe Stott's 20th heart transplant anniversary.  Unlike other anniversaries, such as wedding or job celebrations, this one was bittersweet.  In November of 1996, Joe received Bryan William's heart.  For Joe and his family, it was a miracle.  "Doctors told me that I was dying.  I was going to leave the hospital with a heart or in a pine box."

Miles away, another family faced tragedy.  Bryan was only 19 at the time. Bob and Ruth Tilley had taken Bryan in as a troubled teen and had helped him heal from his past.  Bryan learned to trust again and turned his life around.

He had everything going for him: well-loved, popular, high school senior, football player and on the R.O.T.C.  As a matter of fact, the accident happened while he was running home to tell his family that he made the honor guard.

Racing across a busy highway, Bryan never saw the car.  Family and classmates crowded the hospital's ICU waiting room for days. Unfortunately, Bryan didn't make it.

When the Tilleys were approached about donating Bryan's organs and tissues, they knew what he wanted.  Earlier that year, one of Bryan's closest friends died of cancer. Classmates gathered at the Tilley's house and reminisced.  Ruth recalled that after a while, the conversation turned.  "If anything happens to me, I want my organs donated," Bryan said.  Several others agreed and some voiced concerns. Bryan, however, continued to tell his friends that he was definite. He even made sure that he was registered on  his drivers' license. For those who knew him, they weren't surprised.

Bryan's heart immediately started to pump once it was place in Joe. The transplant was a success. Life, for both families, was never the same.

A few years later, Lifelink of Georgia, made the Stotts and Tilleys wishes to meet come true. They  made a real connection.  Since then, both families promote organ donation registration.   Joe volunteers with the Georgia Transplant Foundation as a mentor for patients and families involved in heart transplants. He and his wife, Judy, are very active in Donate Life of Georgia.

As a matter of fact, last June, the Stotts and Tilleys traveled as part of Donate Life Team Georgia to Cleveland, Ohio.  There, they joined over 6,000 donor families, organ/tissue recipients and living donors to participate in The Transplant Games of America.  The national event is held every two years to celebrate and honor those involved in transplants.  Recipients and living donors compete in Olympic-style events.

I was privileged to travel to the games, as a part of Team Georgia.  I have become close to both the Tilleys and Stotts.  It is evident that Bryan's spirit lives on.  The event included a donor family tribute.  A quilt square with information about Bryan and Joe was celebrated.  No dry eye here.

Joe earned a silver medal in bowling.  And, to bring things full circle, Bob Tilley placed the medal around Joe's neck.

What about you?  Have you thought about organ donation?  Are you registered?  If you are, make sure at least two family members know.   Check to see if your license is marked.  (If you have just continued to renew, it might not include this information).

If you aren't registered, here's food for thought: 18-20 people die everyday while they are waiting for a life-saving transplant.  As a retired teacher, that's a small classroom. My school had 29 classrooms.  In one month, we could lose the equivalent of one school population.

But, here's the deal: One person's organs can save up to 8 people.  It can help up to 50!  

Registration is free and easy. Click here. Not sure if you want to sign up?  Concerns? Questions? No problems.  Click here to learn more. 

If you are registered, thank you.  Please let your family know. Join me in encouraging others to register.  Pray for families who selflessly choose to donate their loved ones' organs and tissues. Pray for a cure so that transplants are no longer needed.

Monday, November 14, 2016

Milestone Monday-Transplant from Living Donor Helps Cousin Thrive

(Or Five Reasons Why I would donate a kidney all over again)

1. My cousin, Denise, can spoil her grandchild. When Denise had her first child, her mom had already started dialysis. Denise's mom wanted to help her take care of the baby, but she could only stay for an hour or so.  Progression of PKD (Polycystic Kidney Disease), along with dialysis left her exhausted. Now, years later, Denise has all the energy that she needs.  She's even going to take care of her grandson when her daughter returns to her "day job." Talk about changing family history.

2. Denise is dialysis free. Because the transplant was done before she had to begin dialysis, Denise was able to avoid it altogether. Dialysis does not offer a cure.  It was originally designed to help patients while they wait for a transplant.  On an average, patients on dialysis may survive 5-10 years. (There is data that many can live longer.) The transplant coordinators have said that patients who can move directly to transplant feel better sooner.

3.  I feel better than ever.  As her living kidney donor, the transplant team follows my medical history for two years.  Most procedures are done as a laparoscopy. I have four small scars to remind me that transplants save lives.  Lab work and consultations are regularly scheduled to ensure that I do well.  Our second anniversary, called a "kidneyversary," is coming up this December.  I feel wonderful.

4.  Guess what?  She'll need another one. The sad news is that there is nothing in place to maintain Denise's health for the rest of her life.  Transplanted kidneys from deceased donors last an average of 7-10 years.  Kidneys from living donors, like mine, may last twice as long.  Denise and I are both in our 50s.  Unless medical research improves, Denise may face dialysis in her 80s.

5.  There is no cure for kidney disease yet. There is a lot of progress in the area of portable dialysis units, but no cure has been found.  Until that happens, I'll keep advocating for living kidney donation.  I would do it all again in a heartbeat.

Thursday, November 10, 2016

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."   

Monday, October 10, 2016

On the Kidney Transplant List?

It's torture when you are waiting to hear that an organ's available. 

You've probably done everything that your coordinator has recommended. What else can you do? 

The Living Kidney Donor Network has ideas to help you create a social media campaign. Click here to visit their page

Need help getting started? Leave a comment. Maybe I can help.

Friday, September 23, 2016

Waiting for Someone to Rescue me from Kidney Failure

I hear you.  Yesterday's session in Nashville, "How to Have Your Donor Find YOU!" was an opportunity to meet some of you.Click here to see the clip with Harvey.

 The wait is discouraging. The statistics are overwhelming. And, you're tired.  Many of you have been on dialysis and spend more that half of your week exhausted. Kidney disease is affecting every organ in your body.

There is hope.  The Living Kidney Donor Network provides information to help you find a donor.  Harvey Mysel, director of the network said something that rang true for me.

There are people who are willing to be living donors.  The way to reach them is TELL YOUR STORY.  That's how I was moved to step forward for my cousin.

We lived 900 miles apart. It had been over 35 years since we'd seen each other.  It wasn't until she started telling her story that I reconnected.

Click here to visit the website, to learn more. Reach out to Harvey. Keep telling your story. Hang in there.

Wednesday, September 21, 2016

We're Going 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. 

Thursday, September 8, 2016

Take your prescriptions or else (the rest of the Facebook post)

(also known as How I got lost in a restaurant booth)

Who could have guessed that leaving my glasses at home would have caused such a disruption?  In my attempt to be a few minutes early for a lunch meeting, I left my glasses at home.

I have been wearing prescription glasses for over ten years, so it felt funny when I arrived at the restaurant.  I glanced at my phone to see if I had any messages. That's when it hit me.  I didn't have them.

Too late to go home.  I'd miss the meeting.  So, I decided to do the best that I could. Problem was, no one else showed up. The text on my phone screen was blurry at best.  I couldn't pull up the number, because it was on an email.  Oh, and I couldn't see to enter my password.  Bad to worse.

Fifteen minutes passed and I went ahead and got a booth. The waitress mentions that since they are part of a franchise, my friends might be at the other location.  Graciously,  they call and ask if there is a party waiting for me.  (Yes, it does sound that weird to say that out loud).  No, they inform me, there's no one there looking for me.

Still puzzled about the time mix-up, I decide to leave a tip for my troubles and head home.  That's when I thought I heard someone whisper.  Maybe it was just my insecurity, but I thought for sure I heard, "Do you think she can make it home?" By the way, my dear officer friends, my vision is not that bad yet.  I can drive without them. It's the small print that gets me.

When I got home and called my friend, he reminded me that we had rescheduled the meeting for the following week.  Oops.  I learned several lessons that day: 1. check emails frequently 2. It's okay to admit that I really need my glasses.

What about you? Have you ever found yourself feeling lost or frustrated? Tell me what happened. I'd love to know.

Where is Your Focus?

Notice the blossoms in the middle of the photo? I didn't.  I was just leaning back on a well-worn patio chair, with my feet propped on the table.  Wind chimes played a gentle tune as the morning breeze brushed my hair.

It wasn't until I went inside and viewed my downloads that I saw the group of blooms in the middle.  I recall seeing a yellow box surrounding them before I clicked.  That's when I remembered what my camera could do.  

If I waited before I clicked, my camera would automatically focus. All that I had to do was pause and choose where the box would zoom. Hmmmm. Sounds like a reminder about life.

Our days are filled with countless tasks.  It's not always a choice between good and evil.  Sometimes, it's between two things that are equally good.  

I'm passionate about helping people find kidney donors. Another cousin is heading into kidney failure. However, I'm also crazy about taking care of my teenager.  Then, there's my siblings. Oh, and my writing groups. Don't forget the neighbors.  Remember the volunteer roles at church.  And on and on.

It's time for me to stop and pause. I need to pause and let God direct my focus.  He is well aware of my desires, talents, temptations and time. He will help me accomplish what He has planned. Maybe if I follow his lead, I will enjoy more of the beauty along the way.

What about you? Is your life filled with critical tasks?  Are you torn between them?  Have you become exhausted?  What would happen if you paused and let God show you where to focus?  I'd love to know.  Please leave a comment. I'd love to pray for you.

"Let your eyes look straight ahead; fix your gaze directly before you. Give careful thought to the paths for your feet and be steadfast in all your ways."   (Proverbs 4:25-26 NIV)