A New Kind of Volunteering: Be A Donor!

During these last few weeks I have thought about life as a wonderful gift.  None of us know where this journey of life will lead us.  We need to embrace each and every day as the blessing God gives us.  I have met so many people during this journey with Ken and through their eyes have seen the strength and courage to accept what the Lord has planned for us.  I was inspired by this article written by a kidney donor and wanted to share it with all of you.  What an amazing outlook on life he has and what an inspiration to others he is.  

May God bless all of us on this journey called life and until next time may the Lord carry us on our journey,

Pat

No Time to Volunteer? Just Donate a Kidney!

By Jim Sollisch, NKF Guest Blogger

Since I donated a kidney to a friend almost 4 months ago, I’ve had a lot of conversations that go like this:
Nice person: “That’s a big deal. I’m not sure I could do something like that.”
Me: “Sure you could.”
Nice person: It seems so extreme.
Me: Do you do any volunteer work?
Nice person: I volunteer at a soup kitchen every Thursday night.
Me: That’s a big deal. I couldn’t do something like that.

I’m not kidding either. For me, donating a kidney to a friend was easier and more rewarding than regularly volunteering or being on a non-profit board. Volunteering week after week bores me. And I tend to be very selfish with my time. Same with being on non-profit boards. I’ve been on several, and all it takes is one good long board meeting about finances, and I’m ready to trade places with a guy confined to solitary in a penitentiary in the deep South without air conditioning.

So what’s my point? Two points really. First, there’s not a hierarchy of good deeds with organ donation on the top. To me, the real heroes are out there feeding the hungry week after week. And second, if you’re anything like me— impatient, action-oriented, competitive– donating a kidney is a perfect opportunity to do something positive without having to sit through boring meetings or face the same task week after week. It’s an event, not a commitment. I approached it as if I were training for a race. For six weeks leading up to the surgery, I worked out harder, ate better and got down close to what I weighed in college. I started to appreciate my good health in a way I never had before. My friend’s struggle with kidney disease made me feel incredibly lucky to be so healthy. It seemed so natural to give her some of what I had. Not a big deal at all.

I couldn’t wait for the surgery day to arrive. I looked at the recovery as a physical test. I wanted to recover faster than any other donor. Again it was like getting through a series of grueling workouts. But when you’re in training, the people in your life aren’t really cheering for you. In this case, people couldn’t have been nicer. And that made it even easier.

I was back at work in ten days. And after the mandatory six-week recovery period, I was back to playing basketball and working out. I was completely back to myself—except for one lingering side-effect: an incredible sense of happiness and well-being. I actually felt like I had accomplished something real and tangible. And that’s a feeling I’ve rarely gotten from other acts of giving.

Mr. Sollisch is senior vice president/creative director at Marcus Thomas LLC, an ad agency in Cleveland, Ohio. He donated a kidney to his colleague, Joanne Kim, earlier this year.

A Sister's Words of Wisdom and Faith

Ken and Roxanne Dancing At Greg's Wedding in 2011

Greetings to all who have followed along on this journey!  Some of you are heavily invested emotionally and others considerably less so.  Irrespective of your motivation or involvement, I believe this is ultimately a story of God’s love and faithfulness towards us, whom He has created.

As Ken’s sister, I watched this whole process develop somewhat remotely.  I was first told of his diagnosis years ago by our mom.  Most of his early trials and treatments were relayed to me by her as well.  I never thought much that there would be a time in the future when his disease could progress to the point of requiring a kidney transplant. Two years ago, at my son Jonathan’s wedding this became more real to me.  Even then, it still seemed to be a distant and future possibility.  But, life raced forward and by the end of 2010, it became a reality.

Upon finding out that he would indeed require a kidney transplant, my immediate reaction was that he could surely have one of mine.  Alan (my husband and a MD) explained to me that a match with a sibling was more probable than that with his offspring, as siblings are more likely to share similar genetic material.  I felt that I would be the one to match; and, I was totally at peace with that possibility.  I mentally prepared for a summer “kidney sharing” event since my schedule and obligations are eased somewhat then.  When I as well as my other siblings and his children were disqualified because of blood type incompatibilities, I was stunned; however, the God of heaven and earth most definitely was not.

The last 18 months or so have been an emotional and physical roller coaster ride for Ken, Pat, and their loved ones.  When the initial testing of Alex and others proved to be unfruitful, it seemed as if this might be a long and arduous journey indeed.  I enlisted friends and acquaintances to place Ken on their prayer lists.  Those prayers were answered when it was determined after repeat testing Alex was a great match and he unselfishly agreed to become a donor.  That got me to thinking…what are the chances that someone from Greenville, SC who is some 30 years younger would be a perfect kidney donor match for someone in New Orleans, LA?  And then, that very person would have been woven into the life of the one needing his precious kidney?  Amazing that Kelly would just so happen want to attend college at Clemson (don’t most kids from Louisiana want to party at LSU or at least somewhere closer than South Carolina??), and she would meet, date, move away from, reconnect with, and ultimately marry Mr. Perfect Tissue Match for her dad.  Or is it?  Some may think this is just a great coincidence.  To me, I see the fingerprints of God ALL over this.  Only He can orchestrate such a grand symphony.  

I have been doing a Beth Moore bible study of Daniel this summer.  When Shadrach, Meshach, and Abednego are thrown into the fiery furnace, Beth points out that there are 3 possible outcomes for each and every one of us when we are subjected to the fiery furnaces of this life.  God can deliver us from the fire completely which builds our faith.  He can deliver us through the fire which refines our faith.  Or, He can deliver us by the fire into His arms.  Ken seems to have been delivered through the fiery furnace and I pray that he, as was the case with Shadrach, Meshach, and Abednego, will have “no smell of fire on him” (Daniel 3:28) and his faith and that of all who read this will be strengthened and refined.

To God be the glory!

Roxanne

Come Walk With The Renal Roigs!

In November 2011 our family participated in the Kidney Walk at Audubon Park in uptown New Orleans.  Family and friends joined us on that day.  At that point in our journey for a kidney for Ken we were happy that dialysis was working for Ken.  He was on it for about 8 to 9 hours a night.  He was working full time, playing golf on the weekend and enjoying life.  Alex, our son-in-law, had begun the testing process to see if he was a match.  We walked, laughed, ate and danced that day together with our family and friends.  We were the “Renal Roigs” and we were committed to finding that kidney for Ken. I've shared some pictures below of that wonderful day.

This November we are planning to take part in the Kidney Walk in Audubon Park again. What a difference a year makes!  Ken is on dialysis for 10 – 11 hours a night.  He still works full time and plays golf but our life is totally controlled by the dialysis treatments but I am not complaining.  This is a life saving treatment.  We are committed to keeping Ken healthy and we are looking at that “beautiful light at the end of the tunnel” – a new kidney donated by Alex.  This Kidney Walk we will be focusing on celebrating Alex, our hero and donor, and all donors out there.  We hope to encourage others to consider donating this precious gift of life for someone else.  We are amazed and humbled by all the people who are following our blog.  We would like to ask all of you to consider joining us this November 4th and be part of our team.  You are all part of our family already so come be a part of Team Renal Roig.  We would love to have you all.  If you are out of town and considering a trip to New Orleans, November is a beautiful month in our city.  We can give you ideas for lodging, dining out and other fun things to do.

If you are interested in joining us, please contact me at akidneyforken@gmail.com  I will give you more details on the walk and how to register with our team. 

Until next time may the Lord carry us on our journey,

Pat

Team Renal Roig

Addie and Stef

Mary and Camille with Jim and Ken in background

Team Dredge

Alex and Jillie

Danny dancing with Sophie

Ken's sister, Sheila, dancing and entertaining

Addie and Sophie swinging

My dear friend Roberta

Alex and Kelly

"Paying It Forward"

Last week I was hoping to announce the date of Ken’s transplant surgery. So many of you have asked and we were expecting to have a firm date to share as part of the blog last week. Instead, the scheduling has continued to be in flux so I decided to push the blog out a week hoping to announce a date today. Although we do not have a final confirmation, the date will likely be Monday, September 10^th. We are all saying prayers and keeping fingers crossed that the surgeon will be available on that day.

When Greg and Camille suggested I start this blog a few months ago, I never really envisioned what it would become. In the process of finding a kidney for Ken, people have reached out to us sharing their most personal stories. This is a responsibility I don’t take lightly. I am humbled that friends and strangers have opened their hearts to me, and I want to be a voice for those searching for the same outcome that we have been blessed with – finding that one selfless person willing to give the ultimate gift of life to another human being.  So with that, I would like to share one of these stories with you about a dear friend.

Almost fifteen years ago a soon to be mom for the first time had some routine tests done. Results showed blood and protein in her urine. Her doctor thought this could have been a result of the pregnancy and wanted to test her again 6 months later. She learned she had a kidney disease.  It was shocking to her.  She did not feel bad and had no symptoms.  She decided to take charge of her life by making some lifestyle changes like eating a low sodium diet and making exercise a daily part of her routine. She did have to take medications for her blood pressure but she continued to lead a normal life.  She was blessed with two more healthy girls and life was good.  As the girls grew she was busy as all moms are with activities at school and after school.  Her family moved and the girls changed schools all within a short time frame.   During this transition time my friend started forgetting about taking care of herself.  She often skipped medications and did not keep up with routine doctor appointments.  She finally made an appointment to have a regular checkup.  Her doctor ran routine tests and the results were not good.  She was notified that she had to go back to her kidney doctor immediately.  The disease had progressed.  She went from her normal routine for the past 15 years to talking about kidney transplantation.  How could this be happening to her she wondered?  It was a whirlwind the next few weeks as she was thrust into appointments with doctors talking about surgery and testing for possible donors.  She had not shared this information with anyone except her husband.  Now she had to let her family know.  This was probably the hardest thing for her. She is struggling with the enormity of this situation.  She has so many feelings that Ken and I have experienced on our journey.  It is so difficult to talk about this disease with friends.  You want them to know but you don’t want them to “feel sorry for you.”  We walked that path and realized that we needed the prayers.  We needed people to know so our story could reach others and maybe the “greatest gift” would be found. 

Today I am asking you for prayers for my friend and her family. In her own time she will be able to share her story. I feel blessed that she allowed me to share this much on our blog. Her blood type is A. If you or someone you know would be interested in becoming a possible kidney donor for her, please send me an email and I will pass on the information. You can reach me at akidneyforken@gmail.com. We as a family will continue to be advocates for people searching for organ donors and pledge to do everything in our power to “pay it forward.” As always, thank you for reading and supporting our cause.

Until next time, may the Lord carry us on our journey,

Pat

A Selfless Act By A Wonderful Man

Since Ken was our blogger last week and announced our most amazing news, this week I wanted to share my feelings with all of you who have been walking with us on this journey.

When Alex first told us he was going to be tested as a potential donor, I was shocked.  This young man was willing to give his kidney to his father-in-law. During the testing process, the staff at Ochsner Hospital said this was the first son-in-law to donate a kidney to his father-in-law. This just begins to show the magnitude of this selfless act of love. Alex was tested from his head all the way to his toes, and some tests done twice. He completed the testing during a few trips back and forth to New Orleans over the course of a few months. There were some problems during the process and I, the perpetual worrier, started to WORRY!!!!!! I was always worried about Ken, but now I was worried about Alex.  I wanted the very best for Ken, and I would move mountains to help him lead a full life again, but I am also a mother. I felt like this was too much of a burden for Alex and Kelly to carry. I thought I could see worry in their eyes too. Ken and I realized we had to become more proactive in the search for kidney transplant options. We contacted University of Alabama-Birmingham Kidney Center to find out information on its Paired Kidney Exchange Program.  We found information on research programs that are trying to grow kidneys for patients on the transplant list.  And finally Greg and Camille talked to us about starting a blog.  Seeing the outpouring of love from all of you following the blog, we were reinvigorated with hope and more determined than ever to find Ken a kidney. And then, we got that AMAZING phone call from Alex and Kelly informing us that Alex was a match.

I am so happy for Ken, but of course nervous and anxious.  I am so thankful to Alex and Kelly, but also nervous and anxious for them.  This is where I rely on my faith. I have to give these worries to the Lord.  As one of Ken’s sisters so beautifully reminded us, Kelly chose to go to a school in Clemson, SC – neither Ken nor I knew anything about Clemson.  She met a young man her senior year named Alex and they fell in love. They got married a few years later. And now he is giving his kidney to her father, Ken.  Just a coincidence? I don’t think so, that is a divine plan. 

I also wanted to say a special thank you to Alex’s parents, Ginger and Sandy. You raised a wonderful young man.  I know how proud you are of him.  I will always remember talking to Ginger and expressing my worries and fears. I told her I did not want Alex to do this and she told me what her minister said. “How many people get the opportunity to give the gift of life to someone in their lifetime?” The Roig family is so incredibly blessed to have Alex and his family in our lives.

Lastly, I wanted to thank everyone for their messages of joy and hope after hearing the news last week. It was our dream that one day Ken would be writing that blog and thanks to Alex that dream has come true.  We are very excited to document the process ahead in many interactive ways and have you all be a part of it. We consider you all members of our family and we will go through this together. As always, thank you for your continued support and love.

Until next time, may the Lord carry us on our journey,

Pat

The Greatest Gift

Hi All,

My name is Ken … that’s right, the Ken of this blog “A Kidney for Ken”. First of all, I would like to personally thank each one of you for caring enough about me, my family, and this cause to spend time every week reading our blog.  Today I wanted to share some amazing news with you. After several months of extensive testing, my son-in-law is officially a match. I have found a kidney! We are scheduling the transplant surgery for late August. As you can imagine, I’m still in shock, but so grateful to my son-in-law for this gift of life.  His selfless love continues to blow me away, and he will always have a special place in my heart. For so many years battling this disease, I found myself asking "Why me? Why am I so unlucky?" Today I ask myself "Why am I so lucky?" I can't answer that one exactly, but know that my faith in God, and the unconditional love from family and friends like you have gotten me to this point. And so it is only right that I share this wonderful news with all of you today.

I would be remiss if I didn't recognize a number of special people in my life starting with my better half… my wife of almost 40 years.  Pat has been my angel in caring for me while I’ve been on dialysis for the last year.  I can’t imagine surviving this past year without her selfless love, commitment, and encouragement.  She has been my “ROCK” and I love her very much.   Next are my 3 wonderful children.  In fact, my son and daughter-in-law were instrumental in creating this blog.  They along with my wife have been committed to getting the message out for my need of a kidney.  Their efforts have been remarkable. I also want to thank my son for the beautiful words he wrote about me on this blog, very touching and heart warming.  My two daughters have also been so supportive.  My oldest daughter has three wonderful daughters…my precious granddaughters.  Next to my own children they are the pride and joy of my life and are one of the reasons I have been so steadfast in finding a kidney.  I look forward to sharing my time with them for many years to come.  My oldest daughter has been caring and loving during my journey and she is always there to lend her support and love.  I want to thank her husband as well who was willing to get tested as a potential donor too.  His willingness to do that was very touching and appreciated.  My youngest daughter also holds such a special place in my heart. Although she lives out of town, her concern and love has been unwavering during the past year.  And of course, her husband, my kidney donor, who has decided to give me the greatest gift of all, the gift of life. He is truly an inspiring and remarkable man.

Through this blog, we have asked you to follow our journey to find a kidney for me. Today a new journey begins. And I invite and ask all of you to keep following along. We will be documenting the entire kidney transplant process on this blog starting now up to the surgery and through my recovery. It is time for me to “pay it forward," and help educate and support the many families out there in our situation. We will continue to be advocates for kidney disease patients, and through our own experiences over the next several months share our stories of hope and faith.

Again I can only say thank you.  Your love and support means everything to me.  As I continue my journey, I thank God for my son-in-law and this wonderful gift he has given me.  God bless all of you and continue to keep me in your prayers as I will keep you in my prayers.

Until next time, may the Lord carry us on our journey,
Ken

Help Us Help Others

Sometimes it takes a tragedy to make us see the true meaning of our journey here on earth.  This week my daughter’s friends buried their precious 21-month-old daughter.  I realize we never know what is going to happen to us on this journey through life.  But I do know we can’t do it without faith.  Faith is the glue that holds us together through the joys and sorrows in our life.  I started thinking about all my friends and family members.  Every one of them has a story to tell about this journey through life.  How many people keep their struggles and their pain to themselves – not wanting to burden others?  I know I have done that many times in my life.  I do tend to share my joyful moments but keep the painful ones inside not wanting to burden others.  Maybe we all need to share these sorrows too!  

Life is so short and we need to celebrate the beauty that is around us.  We need to say “I love you” more.  We need to give hugs and kisses more.  We need to truly listen to those around us more.  We need to laugh more.  We need to sing and dance more.  We need to play more.  We need to be more “childlike”.  We need to cherish our family and friends.  And we need to thank God each and every day for all the blessings He has given us. 

In supporting our blog, you are aware that we are doing everything in our power to find a kidney for Ken.  But our mission goes beyond this.  We are advocates for all families out there seeking kidney transplants. S. 1454 /H. R. 2969 is arguably one of the most significant pieces of legislation for kidney transplant patients since the ESRD coverage decision in 1972.  This legislation would extend Medicare coverage of immunosuppressive drugs for transplant recipients who are under age 65 and who under current law lose their Medicare 36 months after receiving their transplant.  Families like mine are depending on this legislation to pass in order to make sure they are able to afford and receive the life-saving medications needed after a kidney transplant.

MY CALL TO ACTION FOR YOU IS TO CLICK ON THE E-ADVOCACY SYSTEM LINK BELOW.  You will be taken to a page where you can take action.  You simply need to fill out a few fields with your contact information and submit.  It will only take a few minutes of your time.  The advocacy message has already been written and will be delivered to your congressional delegation based on your location.

One of NKF's top legislative priorities is S. 1454 / H.R. 2969, to help kidney transplant recipients obtain the life-saving immunosuppressive medications that are necessary to maintain the viability of their new kidney.  This legislation would extend Medicare coverage of immunosuppressive drugs for transplant recipients who are under age 65 and who under current law lose their Medicare 36 months after receiving their transplant.  H.R. 2969 has nearly 100 cosponsors and S. 1454 has 15 cosponsors!  If you have not previously done so, please contact your congressional delegation using our e-advocacy system to request their support (or to thank them if they are already a cosponsor).  Thank you!

Until next time may the Lord carry us on our journey for a kidney for Ken,

Pat