Year Three, Reflecting on the Journey

The evening we got engaged, Marty and I stood in the Huntington Beach pier parking lot discussing our future. Marty popped another questiong that night, '' If you want to marry me, you have to realize that I don't want to live in California forever and be willing to move away someday.'' I agreed with trepidation and fear that I would be able to leave my family someday.

We had a journey ahead of us that most will never go through in life. Burying his grandma and dad before we were twenty one. Moving away for the first time to Visalia, Ca with our young son Conner in tow. Starting out with nothing, losing a baby, battling Type 1 diabetes, working hard to make a life for our family. We finally had realized our dream of me staying home and Marty working in law enforcement, life was looking up. Plans were being made for me to go back to school and gain a career in case anything ever happened to Marty, that was just passing conversation, nothing serious.

Then a high blood pressure test at work, followed by a trip to the doctor the next day and a phone call on a Wednesday afternoon that threw our world upside down. End Stage Renal Failure at 31 years old.....in one moment our lives were turned into a dark tunnel. I always liken it to being in a metal air conditioning shaft with no way to turn or move, the only way is to crawl forward looking for a way out.

We were 30 and 31 years old,  Conner was 9 and Elizabeth was 6 yrs old.

We knew immediately that a transplant was the best solution. We started seeing a Nephrologist who mumbled and looked like Santa Claus with a fiery temper. We were misled by the office staff about the kind of transplant he should have. We wanted him to be transplanted in LA but God closed that door and we were turned to Stanford University, the best in the nation. We traveled in  zero visibility fog getting rear ended in a rental car in one of the multi car pileups on the 99 corridor between Kingsburg and LA. We limped our way to Stanford, shell shocked and thinking our lives were over.


A doctor came into the room and asked a simple question, ''Why doesn't he want a kidney/pancreas transplant? he is the perfect candidate for one.'' We explained that we didn't have seven years to wait for that and were informed that we were misled. The wait for kidney pancreas was one year versus seven years for just a kidney. We agreed and waited to be told he was accepted on the list. He was listed October 8, 2007 and the wait began.

There was a hope he would never have to go on dialysis, he still had kidney function left and there was a chance that might happen. Unfortunately it wasn't to be and he started a regimen of dialysis at home every four hours. It was a nightmare experience filled with terrible things we would like to forget. Machines beeping, waking up every four hours sleepless nights, high blood sugars, passing out at work, high blood pressure that scared us, swollen legs. We wondered would our miracle come?

We put our lives on hold. We didn't leave our town for two years unless we made a trip to Stanford. Our house became a prison of sorts for us.

During this time Marty started dreaming. One day while cooking in the kitchen he said, '' I think that if I get better, I want to move to Peachtree City,GA'', that dream kept us going, it gave us something to cling to and dream about in a very dark time.

We kept hearing that people in southern states were waiting short times for organs and the wait list wasn't as long. It seemed like a good choice all around.

Every day after October 8, 2008 was sheer torture. One year turned into two years and two years turned into three years. We spent so much time waiting for our donor, praying for that family, we always sensed it would be a man. In September 2010, Marty was taken off the wait list briefly due to a doctor calling him non compliant because his phosphorus number was high. We thought for one weekend, death was very certain. One day in December 2010, our family laid in our King sized bed and cried together, Marty's toes were black in a place and we thought he wasn't going to make it.

Then a premonition from Elizabeth on December 17, turned into a call from Stanford on December 20th, Marty was next on the list and we were on stand by.

The call came 1/1/11, forever to remain our lucky day. One last night of dialysis, a morning spent trying to lower his insanely high blood sugar.  1/12/11 Marty was wheeled into the O.R. for a nearly twelve hour operation. He came out with a working kidney and pancreas. The months after were tenuous and stressful, thanks to so many people and help from all over, we made it through.

We took a trip to Georgia, started planning to move in 2013. God had other plans, it wasn't meant for us to go to Georgia. That was just a dream to get us through but the dream of moving became reality. We took a chance at a job offer and moved to Knoxville, TN. Our dream finally became reality.

It has been a tough year of transition and growing pains. We have learned some tough lessons but grown all the way through. We have laughed, cried, prayed, grown, and had adventures together. Everyday we think of Jerry, our eighteen year old donor who gave Marty new life and his mother Debbie, who in her time of grief made a difficult choice. Dialysis and insulin are now things of the past and only hope remains. We are grateful for this gift of life and can never tell you enough.

Our year in review: http://flipagram.com/f/J94jNLGGpT#

Register to become an organ donor: www.taylorsgift.org

Donate Life Day 2013: A Tale of Two Families

September 23,2010 A family in California is in the midst of a dark valley waiting for a much needed kidney/pancreas transplant for their father and husband. In Texas, another family is in the darkest journey of all, struggling through grief after the loss of a child.

That afternoon, while I was on Facebook, a link to a video was shared with me, I watched it and sat weeping. The Storch family from Texas meeting the recipient of their daughter Taylor's heart. In March they had donated their 13 year old daughter's organs after her death in a skiing accident. I anxiously awaited Marty's return home from work to watch the video together.

I will never forget sitting on our couch that afternoon, watching the video together and weeping. This family had lost their child and yet given a tremendous gift to others at the same time. It brought home the price that would be paid for Marty to live a new life. Our son Conner was almost 13 at the time, the same age that Taylor was when she died. It was just too close to home. During this time, Marty had been recently re-listed on the transplant after huge misunderstanding with doctors and we knew his time was coming near. It brought reality, so close to home. Four months later, Marty received a life saving Kidney/Pancreas transplant.

We found out her parents had started an organization to raise awareness for the need of registered donors. I started sharing their posts on social media as often as possible. Who does that? Lose a child, donate and give life and then starting a foundation? Todd and Tara Storch, that's who. These amazing people in the midst of dark grief gave so much. It inspired us with hope, they became our donor family in a way, donor's of hope. We don't know them but we feel such a kinship with them.



This week, I picked up the new book written by Todd and Tara sharing intimately their journey with losing Taylor, organ donation and the donor's stories themselves

I started reading yesterday afternoon after Marty and I came home from a Nephrologist appointment at the University of Tennessee. We were there to check on his new kidney and make sure everything is as it should be. We got a great report and that always makes me think of Jerry, his mom and the Storch family. Where would our family be without organ donation?

The second chapter of the book is a look into the life of the recipient of Taylor's Kidney and Pancreas. The chapter gave me the chills. It was an honest look into life before transplant of a Type 1 diabetic. If you ever want to know all of the things I've never shared, read this book. It shares in detail many scary experiences that Marty and I ourselves lived with low blood sugars and other things. I couldn't have written it better myself.

I couldn't put down this book and stayed up until 2:30 in the morning reading it. Our stories are so tightly interwoven in the dates. During the time they were grieving their daughter, we were in the darkest time of our lives. So many of the dates mentioned in the book that they were struggling, our family was struggling as well in a very different way. Something that really hit home, this is the journey of donor and recipient  We trade places in suffering. 

The pain of losing a loved one is forever, while the pain of waiting for transplant is temporary. Thankfully our family always had a good perspective on this. The minute we were told our donor was only 18 years old, the wait meant nothing to us. Our donor died in a horrible way but in his very last act on earth, he was a hero to a family of four.

We are so thankful for people like Todd and Tara. Our family tries to give back by supporting their foundation in any way we can. Today is Donate Life day but it also is Taylor's birthday, she would've been 17 years old today. Instead of wearing the traditional blue and green today, our family has chosen to wear Taylor blue in her honor.

Elizabeth, Marty ( Kidney/Pancreas recipient), Julie and Conner with love to the Storch family

Her life has impacted our lives in a huge way, we never knew her in life but in death she has given our family so much hope. Reading the book and hearing about her personality, she was very much like Conner and I as a person. She was the friend to the friendless, lover of the underdog and champion of the unseen. In her death, she has really changed so many lives and will continue changing lives as the years go on.

Please go out and buy Taylor's Gift the book, register to be a donor on the foundation's website: www.taylorsgift.org, buy a Taylor's gift shirt ( I love mine, you can see it on my Twitter avi and I also make a guest appearance wearing it on the Taylor's Gift site as well) or donate to the cause!

Thank you to everyone who has registered to be a donor, to the family's who've donated and never heard from the recipients, we thank you. To the families who've made the selfless choice to donate, thank you. Thank you Storch family for making a difference and helping to promote organ donation. To Debbie, our hero mom, we thank God for you and Jerry every single day.

A/N as you know, I am a Twitter/cycling Junkie. When I started my cycling twitter, I just so happened to become tweeps with Jonathan Finger one of the recipients of Taylor's kidneys.

Jerry's Birthday

Tonight, we remember our donor Jerry on his twentieth birthday. A life that was short and ended tragically has profound effects that are far reaching. Two years ago today Jerry turned eighteen years old, just fifteen days after deciding to be a organ donor. Twenty four days later, he became Marty's donor, giving his kidney and pancreas as a gift of life after death.

We don't know really anything about Jerry except that he was very young with a whole life ahead of him. Days like today are a real eye opener when we think of him. Today is the first year that we know it is Jerry's birthday or even know his name.

We always knew it was a man, so many friends and family felt the same. We prayed for three years for this boy not knowing who he was or how his life would end? Days like today are hard, we remember that our day is good because of his gift.

Marty was off work, taking care of Conner who is under the weather, joking around with Elizabeth while I worked. Such a different picture of life, all because of Jerry.

Two years ago, we were sad, life was dim and dark. Marty was sick, a sick that I have never really shared the depths of publically. The dialysis was failing and fast, we truly weren't sure if he would ever feel better again.

One day before, we had been given a glimmer of hope and were believing that maybe, just maybe everything would be okay. The story can be read here , it was something so crazy that we only told a few people at the time. It was one story I shared with Jerry's mom over the phone that had us both floored. It happened the day before Jerry's birthday.

One month, almost to the day later we got "The" call  and our lives were forever intertwined. We learned a few months ago that one day before, Jerry's mother Debbie had made the heart wrenching choice to let him go. During this choice, she honored his wish and donated his organs.

Two of those organs came to our family and saved Marty's life. I always tell people, Jerry saved four lives that day. He gave two kids their father and a wife her husband. Not one day goes by that we aren't grateful for the precious gift.

Jerry is our hero. He lives on through his organs and the gift of life he gave our family. We share his name every chance we get so that people will know he lived and he was a hero. He profoundly changed our lives forever and we are forever grateful.

Marty two years later

Marty and Elizabeth being silly as always

Conner and his Dad

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This post is late today so let's plan for tomorrow. I challenge the readers of Just Jules to commit a random act of kindness in honor of Jerry's twentieth birthday. Let's honor Jerry in the best way possible by being selfless and giving to others.

One way you could give is by donating money to Taylor's Gift in Jerry's name. They have a fundraising goal they would like to meet by this Christmas http://www.stayclassy.org/events/2012-holiday-appeal/e21630

The Storch family and their story was a huge comfort to Marty and I during our wait for a donor. Taylor was the same age as our son when she donated her organs.

What a Week!

This has been such a week, so many things happening at once. Ever had a week like that? It was a happy yet extremely overwhelming week.

It started out with a prescription issue. Our very first experience since transplant happened with a pharmacy issue. We use a great pharmacy that specializes in specialty medications. Our specialist has always been helpful and I told her about this issue a few months ago. Unfortunately, she is on maternity leave right now and that information stayed with her. Our insurance no longer covers the brand name of one of the anti rejection drugs and we needed the generic. The difference is about $575 dollars, the new specialist couldn't understand why we didn't want to pay that? Anyone have a extra $575 dollars laying around? didn't think so!

It came down to five minutes before his pills were due to be taken. The delivery driver showed up with the medication at our gate. I told him he saved the day and I hope that I made his day. Marty didn't miss a dose and all was well. That ordeal went on from Monday until Wednesday.

Then Wednesday the call came from Debbie. What a blessing to hear from our donor's mother and hopefully provide her some comfort and peace in her trying time. We are so grateful to them and can never thank them enough. It was very emotional.

Last week, My friend Wayne called and asked me to help him plan a 40th birthday party for his wife Staci. Staci is a long time friend of mine and one of my closest sisters of the heart. I was excited to help and we were keeping it simple. That was Thursday and went off with only one small hiccup. The party was a roller skating party and one of her guests broke his leg and ended up having surgery. Needless to say we all felt awful and nobody will forget the night!

Then I helped run the women's fellowship night at our church last night. The director has been sick with pneumonia and asked me to take it over. It went well and we had a lot of fun together. We played this fun new game which is like pictionary and telephone combine. You write a saying on a piece of paper, then pass it to the person next to you. They read the saying and draw a picture, they fold the paper and pass it to the person next to them. That person tries to guess what the saying is and writes down what they think. They pass it to the next person who draws a picture. This goes on until it gets back to the original writer.

It's been a long week. Needless to say, we are playing hooky from church today and vegging on the couch! I am exhausted in the very best of ways. One thing that was in the forefront of my mind this week was Jerry. Without him this week would have have been much worse and because of him our life is good. It's easy to let little things annoy or upset, when that happens, I get more upset with myself. I remember that not too long ago life was tough and now its not.

I remember when Marty was sick, I looked back on the good times and the silly little things that annoyed me before. I was so upset with myself for letting them get to me. I made a promise to myself to not let silly little things bother me on this side of transplant. I had to remind myself of that several times this week.

Life is good and it was a fun week! Can't wait to see what next week brings!

His Name is Jerry

His name is Jerry, he was 18 years old for only 24 days and he is our hero. Last night, I spoke with Jerry's mom and she told me her son's story. On December 5th, 2010 he told his mom he wanted to be a organ donor should anything ever happen.

One short month later it did. His final act in life was being a hero and he saved Marty's life. I hope it brings his mom some peace and comfort knowing he lives on inside of Marty. We talked for about 45 minutes in a very emotion filled phone call. We hope this is the beginning of a beautiful friendship.

This is about all I will be sharing for now. I want to respect his family's privacy and not share anymore details. I will ask you to please pray for his mother and siblings. This has been very hard for them and they need a lot of support.

I told her that thousands of people read my blog and have been praying for her for a very long time. I think that was a comfort to her and quite a surprise. It was quite shocking to check my voicemail yesterday and hear her message. I had been told by my dear friend Andrea that it would come out of the blue and she was right. The donor's mom just got the letter yesterday.

This is all very new to all of us and really a lot to process. We are hoping she will agree to meet with us and meet Marty face to face. He hasn't spoken with her yet and needed some time to process the information also. This is all I will share, I had to share something with you all since you have been such a support. I wanted you to know about the contact.

If you have any questions, you can email me at jules@julesmpg.com

The other half of Just Jules and Transplant

    Last week, I asked Marty to write a post about his transplant experience and this is what he wrote;

     So, there I am one day minding my own business, (Famous last words, Right?) sitting on the couch sipping iced tea blissfully listening to Julie type away on her laptop.  Very common in our house except for the fact on this day Julie stops typing and says to me, “Why don’t you write a guest blog for me about your thoughts on your transplant and your donor?”   My immediate response, “What is there to say, that you haven’t already mentioned?”  I thought about it for a moment and realized everything Julie has written about our journey is from her perspective.  Maybe, some of you would like to hear from me?  Well, here goes…..

     Let me start by sharing a few thoughts about dialysis.  For me, renal failure and having to go on dialysis was and still is a lesson in humility.  I quickly went from being “The Man” of the house to solely relying on my faith, Julie, my kids and close friends. Dialysis whether it be hemo or peritoneal, quickly drains the strength out of you, both physically and mentally.  If you are reading this and know someone who is on dialysis give them encouragement and be strong for them when they are having a difficult day.  Having a beautiful wife, family and friends like these are part of what saved my life.

The Transplant:

     Right now the average wait time for a person in need of a kidney transplant in California is seven years, I waited three.  Originally I was told I would only have to wait about a year for transplant due to the fact I was receiving a K/P (Kidney and Pancreas) transplant.  Well those of you who have kept up with Julie’s blog know that one year turned into three.

     In the middle of my wait time life sort of became mundane for me and my family.  Day in and day out, not able to take a vacation or travel since I had to do a dialysis treatment every 2-3 hours.    I spent the first two years on dialysis working, remaining on duty at my job.  I did this not because I had too but because I needed to keep myself busy instead of feeling sorry for myself.  I did not tell anyone I was sick until right before I went out on medical leave three months before the transplant surgery.  I did not want anyone feeling sorry for me .  If I wasn’t’ going to feel sorry for myself I wouldn’t allow anyone else to.

 I guess part of why I worked is so the kids wouldn’t have to see me at home sick all the time, at least that’s what I told myself.  Conner and Elizabeth were smarter than that though, they knew how I was feeling and felt just as desperate for the transplant call to come as much as Julie and I. It was only towards the end of my wait time when things started getting really bad for me health wise that I became a whirlwind of emotions.

Not physically able to work for the last three months of my time on the wait list, I spent my days being tired, worn out, scared and even angry at what was happening in my life.   I felt like a prisoner of this disease always on a leash to dialysis treatments.  The once reassuring words from the nurses at the dialysis clinic telling me the “Call” would come and that it would be, “Out of the blue” started becoming cliché.

     On January 11, 2011, I got the call we had been waiting for, the call that would change my life and wouldn’t you know it; it was out of the blue!  All the planning and preparations made by Julie and I flew out the window as we barely had enough time to find friends to watch Conner and Elizabeth before rushing off to Stanford.  That evening was spent. On January 12, 2011, after a 9 hour surgery I no longer needed dialysis or insulin injections to live.

      I have been asked before what it was like to finally get the call for transplant.  The best way for me to describe it is like being a young child going on a roller coaster or thrill ride for the first time.  You spend hours waiting in line filled with anticipation and excitement, until it’s actually your turn to get on the ride.   It’s at that point, nerves, fear and butterfly’s set in.  It wasn’t until they were actually rolling me back to the operating room before I was convinced the transplant was actually going to happen.

     After a week in the hospital I was released to go stay at the apartments subsidized by Stanford for extended stay patients.  The first day out of the hospital Julie and I ventured to the grocery store to buy food and staples for the apartment.  Julie had the grocery cart filling it with meat, vegetables and other wise “healthy” food.  While I on the other hand followed in my electric cart filling the attached basket with ice cream, cookies and other sweet morsels of delight.  After being Type 1 diabetic for 25+ years, I was literally a kid in a candy store.

     A quick side note about the electric carts.  I give props to those who depend on those things for mobility.  During the first few days out of the hospital I had a chance to test drive a few in a couple different stores.  Getting in and out of aisles or racks of clothing is tough in those carts.  Let’s just say there is a store with a “Target” as their logo in the bay area that is now short several displays because of an unknown hit and run driver  with road rage.

     The only other interesting story I have about the transplant process is the Saga of the Catheter and the Stint:  What goes in, must come out, but that’s a blog for another time.

The Donor:

     This is the hard part about writing this blog, putting into words the bitter sweet joy I have living a renewed life.  There is not one day that goes by where I don’t stop to ponder the enormous sacrifice made by a complete stranger and their family.  To give me the opportunity to see my kids grow up and see my grandkids being born.

     Julie and I have always felt during my time waiting for transplant that when the call came it would be God ordained.  We constantly prayed for the person who would become my donor.  I have to admit that during the last few months waiting for transplant I found my self asking God in prayer, “Why me, why have you made this so hard and the wait so long?”  I was soon reminded that God is control, I am not and if I was I would screw it all up.

      During my time in waiting I have always just assumed the donor would be someone my age if not older.  The night before the surgery while the doctors were running their final tests and getting me ready for transplant, Julie and I had the chance to ask Dr. G if there was anything she could tell us about the donor?  After a pause to think about the question, she very cautiously said the donor was 18 years old.  Julie and I suddenly realized the gravity of what she just told us.  When I was questioning God about having to wait  way to long ,and why me, why so long actually meant three precious years for a parent to enjoy watching their child grow up.  At that moment I thanked God for his timing and his sovereignty.

     When I started the whole transplant process Julie and I have always had the intention of meeting the donor family.  We were quickly made aware that the sharing of information has to be mutual between donor family and recipient.  Julie and I wanted to wait one year after surgery to contact the transplant coordinator expressing our interest in meeting the family of the donor.  We wanted in order to let the donor’s family grieve over the holidays spent without their loved one. 

It is my hope that some day soon we will celebrate with the donor family the blessing of a gift of love, a life lived and a life living.

So I suppose that’s about it.  I can’t think of a better ending to this blog than the last sentence…..Marty

Parenting Through Crisis

One question I frequently get asked is how did we guide the kids through Marty's illness? Now that things are better I can blog about this topic and share our advice.

We were honest from the very beginning. Elizabeth was 7 years old and Conner was 9 when Marty was diagnosed. We explained in terms they could understand. Their first fear was that he would die. Of course, we couldn't promise that wouldn't happen but explained we had to trust God for everything.

I remember spending a evening with them in my bed crying. It was tough for them to process at first and we did a lot of praying. As time went on they as well as we accepted the diagnosis. We adjusted to our new life and took it all in stride.

There were times they worried, when they did they came to us and we prayed together. I think hiding things would have compounded the issue. That way they knew nothing was being hidden and they didn't have to hide their feelings from us.

Constant dialogue and open communication is key. They went with us to appointments, helped with keeping dialysis supplies stocked and understood times when we had to go away.

Truthfully, the hardest part wasn't until the very end. When Marty was transplanted and they had to stay away from us for a month. That was the hardest part and the thing they struggled with the most. Thankfully we had many family members and trusted friends who were there for them during that time.

Prayer, honesty and open communication are key. Hiding and sheilding them would have only compounded issues. It was something God ordained in our lives and they had to learn at a young age to trust in him and walk through difficult times.

I hope this serves them well later in life. I think they both will handle tough times in stride and weather storms a bit easier. They've learned life lessons that most kids their age haven't. They are still just kids who love to be kids. They just understand how to deal with difficulty situations when they arise.

Maybe this will help others facing trials and tribulations. We did the best we could under pressure and the kids seem to have survived just fine. We directed them to our heavenly Father and taught them he is sovereign and in control.

"Train up a child in the way he should go and he will never depart from it." Proverbs 22:6

Time Machine Tuesday: The Post Of The Year

The last time machine Tuesday of NaBloPomo 2011, so it is fitting to share the post of the year. I think we all waited so long for this post and I shook as I typed it. It was the last post on that side of transplant and I am glad for it! I was sitting on a little cot in a pre-op room at Stanford as I wrote it. At that point we weren't convinced Marty was really going to get the transplant at that point!

 So here it is: http://julesmpg.blogspot.com/2011/01/we-got-call.html

 There is a post that goes along with it. If you have not heard this story, you must read this post!!! You will miss out on a blessing if you don't:  http://julesmpg.blogspot.com/2011/01/god-told-elizabeth.html 

What do you think of the new changes to the blog? I love hearing feedback and would love to know what you think.