Revive Hope

65 Red Roses' thank-you...

I keep an eye out for news stories and blog postings about lung transplant, cystic fibrosis and organ donation… If I see someone needs a morale boost – I leave a comment and do my best to leave them a little more inspired…

I love stumbling across letters from recipients to donor families… Recipients sometimes post them on their blogs. They’ve sent them to a family they may, or may never know, and sometimes they want their friends and family to know how they feel about this family, and about the person who saved their lives…

These letters almost always come from the depths of our souls…

Dear Donor Family,

Thank you.

Thank you isn't enough. Words are not enough. I can't imagine what grief and pain you and your loved ones have endured in the last 10 months. I only know how much my life has changed.

We’re saying “thank-you” for something we feel mere thanks will never, ever be enough… But we have to start somewhere…

This is a beautiful letter from a girl with cystic fibrosis. OK, I gravitate towards letters from CF patients because I have cystic fibrosis too – I share their experience – and sometimes I get to relive their thankfulness…

Last year, I was a shadow of myself. I lived in the hospital. I was on oxygen 24/7. I threw up multiple times a day and relied on a feeding tube for nutrition. I endured severe back pain and chest pain due to coughing; constantly trying to stay off the pain relieving medications that lowered my breathing rate. I shook constantly, my body ravaged by fevers caused by infections that filled my failing lungs. I was dying.

I was 23 years old and I had to imagine my life without me in it.

I also get to relive some of what we endure living with CF, and waiting for someone to save our lives. We all take a different journey, and we all face it with whatever strength we can muster. It’s another reminder how precious this gift truly is…

Now, ten months later....I am BACK! I am me again!!! I am filled with ecstatic energy every morning that I wake up and jump out of bed. I can walk, skip, cross-country ski, paddle and dance to my hearts content. Right before my 6 month anniversary I walked in the Sun Run with family and friends in honour of my donor. To give thanks with every step and every breath.

To tell the truth, it is so much more than the physical. Yes I can DO so many things that I'd never been able to do but more importantly... I can DREAM. I can imagine a future. I can make plans.

I can HOPE.

Can you imagine giving someone a gift like this? Can you imagine giving someone hope? Can you imagine getting hope? Can you imagine thanking someone for that?

These are my big plans. I also have many tiny victories that I celebrate every day. When I run up a flight of stairs I always pause at the top and give thanks for this second chance. Every time I tell my mum I love her. Every time I rock out with my little brother, windows down, sun shining. Every time I cuddle on the couch with my best friends, pj's on, mugs of tea in hand. Every time I jog to transplant clinic, my chest rising and falling with my quickly beating heart.

These may seem like insignificant moments but to me they are the world. They are my life.

I am ALIVE.

But I’m doing her an injustice by chopping up her letter like I did – read the whole thing the way she wrote it – the way she spoke to the family who saved her life – it’s beautiful…

65 Red Roses – My Donor Letter…

And please say a prayer for her Mom…

My Story goes like this...

It was a slumber party at Laura's house, one of the many I looked forward to.  All of the girls together eating junk food that was not allowed on any other day, laughing at MadLibs books and snickering about cheerleading tryouts and boys at school.  It was just another day in my teenage life.  I hated to be the first to bed at a slumber party, but tonight I couldn't resist.  I was tired, yet I couldn't sleep.  I was exhausted but never calm inside.  Was I anxious about my spring break trip to Arizona?  Was I nervous about my Algebra test?  Two days later I had my answer.  I was in congestive heart failure.

Only a few moments stand out in my memory from that day.  It was March 20, 1994 and I remember his words "Your heart is very sick and you might not cheerlead again."  I remember the frantic drive my mother made, all the way from our small town to the nearest Children's hospital and to the doctor who could see me the quickest.  His name was Carl Reed, MD and we spent hours together from that day forward.  All along they way, he reassured me that there was nothing I could have done to prevent this. 

Testing led to more testing which led to a long stay in the hospital and a missed Spring break trip to Arizona.  My room was covered with posters, balloons, cards, photos and other well wishes from friends and family members.  Dr. Reed came to the conclusion after all of this that I had a condition called dilated cardiomyopathy, caused by an unknown virus that attacked my heart.  In other words, I had a big weak heart.  This is how I explained my ordeal to my young friends who had a hard time understanding illness.

My family helped me live my life with heart disease.  They gave me reason to move on and took the fear out of the fate I was handed.  I made amazing progress despite the emotional and physical changes I endured.

About one year after my diagnosis, I went back being my teenage self, attending slumber parties, playing golf and eventually graduating from high school and then college.  Never forgetting where I had been and the distance I had traveled.

My journey continued with a move to Chicago and a marriage to my wonderful husband Dave.  We filled our lives with social activities, got a puppy and moved into our first home.  Little did we know, just 3 years later, we'd have that home to hold us tight when we were suffering most.

The Bears were in the super bowl and I remember tying to jump up and cheer them on when they landed their first touchdown, just minutes after the game started.  I jumped and couldn't jump any higher.  Strange?  Was I truly winded and tired, just watching a football game?  It must be the cold weather, I told myself.  My annual check up with my cardiologist was just weeks away.

I never made it to that annual check up.  Instead, I was prepped for surgery to repair a leaky valve in my heart, with the hope that repairing the valve would improve my hearts function.  It had dropped from functioning at 30% to a low 15%.  A healthy heart functions at 50-70% so as I had heard many times before, the doctor said "Your heart is very sick."  Even though the surgery itself was a success, my heart continued to weaken, I nearly died of a complication and then finally was listed for heart transplantation.

Being listed was almost a relief because I was so sick and so weak.  The only safe place for me to be at that time was in the hospital.  My goal every day was to muster up just enough energy to get out of bed to use the bathroom.  I dreaded the alternative which was being hooked up to machines to help with this basic function of living.  My anxiety was high and I never slept.  My time was spent counting ceiling tile after ceiling tile,  the beat of the machines beeping all around me.  Waiting was the worst torture I had ever faced in my young life, even though I had love all around me.

It was June and a beam of sun tried to work it’s way through the room darkening shades on my window in this, my temporary home.  I had slept that night for some reason - and that reason was Chloe.  She went home to her final resting place and soon after I heard the news "Melissa, you're going to the Operating Room, they have a heart for you."  The nurses who had become my friends squealed with excitement.  It was like cheerleading tryouts all over again.  We all hugged and cried and I instantly called Dave who rushed to be by my side on this, the first day of my new life with him.

The transplant surgery was a success.  As soon as the heart was in place, it started beating without the assistance of a shock or other interventions.   My family now tells me that they can't even describe the joy they felt when the surgeon came out of the OR and said "The heart is in, and it's beating." 
This all happened 7 days before my 27th birthday.   This present from Chloe made me look and feel alive for the first time in years.   Today, nearly 13 months later, the nurses that took care of me in my sickest day hardly recognize me – I have color in my cheeks, shiny hair and a huge smile that I will wear on my face forever because of this gift. 

 

I have very new goals to accompany me in my new life.  And one of the many reasons why I am happy to contribute to Revive Hope is to keep the memory of Chloe and all donors alive.  My passion is talking to people about my experience so that I can show them that organ donation works.  I’m living proof of  that. Thank you to Ted, Steve and Jenn for this opportunity.

If someone asked you, would you save someone’s life if you had the chance?  Wouldn’t you say Yes!  Register today and become an organ donor.  Save a life, Donate Life

HEROES

You can often find our Steve posting about the heroes (not the show, but I'll get to that in a bit).  I'd like to introduce you to Tim Susco and his family. They are true heroes. Tim seemed like the every day guy that you'd want to be friends with!

Tim Susco, age 25.

Tim Susco ran track and cross-country, overshadowed by teammate Alan Webb, who ran the fastest mile by a high school student ever. Susco graduated in 1999, went to Temple University and received a degree in film and media arts. He worked on various projects in Philadelphia before moving to Los Angeles to try his hand at the entertainment business.

He took any odd job he could find, his father said, and finally landed a job on "Heroes" on NBC. He helped producers find locations around Los Angeles, and was a hit with the crew, his parents said.

Let me also introduce you to Paul Dean, a 60 year old from Maui Hawaii.  In 2007 Paul was waiting for a life saving lung transplant when doctor's discovered had been damaged by the same diseased that debilitated his lungs.

"I accepted that, hey, it's over," Dean said. "I've lived a full life. I've experienced everything I wanted to experience, except I was going to miss my grandchildren."

Dean, who has six children and 20 grandchildren, had moved from Maui to Los Angeles and waited a year in hopes of a transplant. He got the call Aug. 17, 2007, saying he was getting a new heart and lungs.

Just days before Paul got his blessed call, tragedy struck the Susco family on August 11, 2007 when Tim brain was attacked by an aneurysm.  His parents rushed to L.A. to be at his side, but Tim never awoke. He died August 15, 2007.

Paul was the gentleman to receive Tim's heart and lungs.

The operation was a success. Once he was attached to an oxygen tank 24 hours a day and needed a scooter to get around; now he needs neither. His only problem is when his muscles get sore from walking too much.

Soon after the transplant, he looked for whom to thank. Although organ procurement organizations typically seek to protect the privacy of people involved in transplants, Dean and the Suscos began establishing contact through their organizations.

"Every time I write to them," Dean said, "I express my gratitude and appreciation for giving me the chance to continue."

Paul and Tim's parents, Tom and Nancy will finally be meeting for the first time this October in Maui.  They will be attending a parade to honor organ and tissue donation.

The Suscos have gotten more deeply involved in advocating for organ donation and brain aneurysm research. Many people sign up to become organ donors when they receive their driver's license, but it can also be done online in Virginia, through a group called Save 7 Lives -- because that's how many organs can be recovered -- at http://www.save7lives.org.

Although 90 percent of Americans say they support organ donation, about 20 percent -- 60 million -- have formally registered as organ donors, according to El'Jay DeShield of the Washington Regional Transplant Community. Most states, including Virginia, Maryland and the District, have Web sites for online registration.

Information about the benefit race in Tim Susco's memory, at which Webb is to appear, is at http://www.susco8k.com.

You too can be a hero like Tim and his family.  There are 3 things you can do:

#1 Have the important discussion with your family (children included) about your thoughts of organ and tissue donation.  Heaven forbid something happen to you, make that decision easier for your loved ones.
#2 When renewing or receiving your drivers license make sure to mark "Yes"
#3 If it's going to be a while before you renew, please register online with your local donor registry.  www.donatelife.net

The Lives Tim Saved:

In addition to Dean in Hawaii, a woman in California had gotten one of his kidneys. That allowed her to get off dialysis and freed her husband from having to accompany her to the frequent treatments. Another kidney went to a man in Washington state.

His liver was split in two and given to a 3-year-old boy and a 17-year-old girl, the Suscos said. Both organ recipients have experienced dramatic life improvements.

Welcome Melissa!!!

For those of you who are regular visitors, you’ll notice a change to your left… There’s another face there!!!

She looks to be in her mid-twenties… But in her heart, she’s in her mid-teens… Really.

Her name is Melissa.  Melissa has a new heart from a precious donor named Chloe, who came into her life in June, 2007. I posted about Melissa and Chloe yesterday in a post titled, Open Hearted… Melissa already has her feet wet here because most of that post was written by her. I met Melissa via an email she sent to me and asked her to write a little something about her and Chloe that I could post. She sent me a beautiful response in the form of a letter to Chloe, her donor. After I stopped crying, I thought it might be a good idea to have her on our team.

Ted started the My Angel Foundation to spread hope through compassion by providing support to individuals impacted by organ and tissue donation, educating the public about the importance and facts of organ and tissue donation – and to honor his Mom, who gave him her kidney. Ted’s an amazing guy and I know his Mom is proud of him – so am I.

Ted created Revive Hope as a blogging arm of the My Angel Foundation and he and Jenn and I have contributed our stories to Revive Hope. Jenn is Secretary of the My Angel Foundation… Jenn was also a close friend of my donor, Kari, and has developed a passion for telling people about organ donation. Jenn is now my close friend and you might be able to imagine what it feels like for me to hug someone who loved Kari – but it’s better than that.

Ted and Jenn and I are proud and honored to welcome Melissa and her beautiful, new heart into our fold. Melissa will begin posting in the very near future, and she will be posting on Wednesdays.

Here is Melissa in living color. In case you were wondering (Laura, my little Sox fan) the background of Melissa’s picture is Wrigley Field, home of the 2008 World Series Champions… Yes, Melissa is a Cubs fan…

Welcome, Melissa!!!

Open Hearted...

Melissa has Chloe’s heart – both figuratively, and literally.

I “meet” the most special people on these internets… I got an email out of the blue from a young lady named Melissa – she was congratulating me for being selected to ride in the Rose Parade. She learned about me through Gift of Hope and read through my website and our blog. In her email, Melissa told me about her donor, Chloe, and about her beautiful, new heart.

After we exchanged emails, Melissa got another little surprise – Gift of Hope contacted her and told her that Chloe’s family is interested in contacting her directly. I know what that’s like. I know how that feels. For some of us it’s a little daunting, yet it is what some of us want most in the world after receiving a gift like this.

Melissa doesn’t have a picture of Chloe yet – but she knows in her heart, in her mind, and in her eyes that Chloe is the most beautiful girl in her world…

I suggested that Melissa write to me about Chloe, and about herself, so that I could post it on one of my Thursday posts. A few days later she had me crying at my PC. This is what Melissa wrote to Chloe:

Open Hearted

The beams of the hot Midwestern sun warm me from the inside in June, the month of my birth, my new life and the time in which my deepest questions were answered. It was June 10, 2008 when I first heard from your family, nearly one year from the date of your passing. Your mom said she felt it was time to write me, although she had tried before and couldn't get the words out, her emotions blocking the way. For some reason that I can't recall now, I went home on my lunch break from work and naturally, I checked the mail. I never expected to hear from your family, following my initial letter to them. After all, they have faced the most difficult thing in life in losing you. While your gift is my greatest joy, it's at the expense of their deepest sorrow. Chloe, please know how proud they are of you. It seems that you had many friends and were surrounded by real love, a deep love that filled your heart. And today, you still have all of those things through me.

With shaky hands and a sense of peace, I pulled the letter from the linen envelope and out fell an Origami bird. Memories of my childhood bird watching days with my grammie and grandpa flashed through my mind. Though I was sure that this was by far, the most beautiful bird I had seen. It was made from delicate paper and the words inside were even more telling. Open-hearted. That's how one of your friends, who made this bird for your mom described you. I imagined one hundred little birds from your many friends inside a box for her safekeeping. One day she'll read them and smile at the thought of you. Like I do every day.

When I'm dancing at a party, playing golf, making brownies, hugging my husband or just checking the mail, you are there. Your heart is my new healthy gem that brought me from my deepest, sickest day to this moment. I'm more alive than I have ever been and forever I will be grateful for your gift, which represents the highest level of compassion for others. Chloe, I cherish and honor you for giving me back the years that I lost since heart disease plagued me when I was 14 years old. That's how old you were, just 14 - forever young. No wonder you were a perfect match for me. Until we meet again because there is so much I want to tell you...

With admiration and love - your heart recipient,

Melissa

This is Melissa and her husband Dave. I think that Chloe is so very proud of what she’s done for Melissa. I think that Chloe is proud of Melissa.

Ayden

I'm sorry for sharing this heart wrenching story, but I felt this needed to brought to everyone's attention.

This leads me to Ayden. Ayden Groomes was born on April 30, other than showing a little jaundice, Ayden seemed to be in great health. According to his mother, Krystal Esquivel:

  “His doctor told us the yellow tinge in his eyes would go away in a few days,” Esquivel said. “He was doing fine. He was starting to smile and learning to hold his head up. He even had his first set of shots.”

But when Ayden’s condition didn’t go away, the family took him back to the doctor on July 15. He was finally given a blood test and was immediately admitted to Miller Children’s Hospital in Long Beach with a condition called Biliary Atresia, where the bile his liver produces was not moving to the small intestine.

Ayden had surgery July 21, which was declared a success. But within a few days he was taken by ambulance to the Childrens Hospital Los Angeles with liver failure.

It was then that the search for a donor began.

As many of you know, an awesome thing about transplants and humans in general is our capability to donate living partial livers.  Both livers will grow to be fully working and vital livers. So the search began for a match. Esquivel’s boyfriend and Ayden’s father Tommy Groomes is 18, however his blood type is A-, little Ayden needed O+ or O-.  What about Krystal? There was nothing she could do.

Not because she’s unwilling — she’d give anything for her son, let alone a small piece of her own liver. And not because she’s unhealthy or her blood type doesn’t match Ayden’s — they’re actually a perfect match.

All that stands in the way of Esquivel saving her son’s life is a birthday and a parenthetical policy adopted by Medi-Cal.

“I was very surprised to learn that I was not eligible to donate a piece of my liver to my son to save his life because I’m 17,” said Esquivel, of Long Beach. “I was filling out the brochure to sign up for the surgery when the hospital told me I had to be 18.”

Because of the risks associated with acting as a donor, Medi-Cal spokeswoman April Oakley said the agency adopted a policy suggested in the Journal of the American Medical Association which states that “living liver donors should be healthy adults (aged 18 and older).”

Esquivel will become an “adult” in March.

Without using insurance, the cost of the transplant surgery would be astronomical — so high that the hospital, home to Ayden for the last month, won’t even hazard a guess.

“I just can’t bear that insurance is the reason we can’t save this baby,” said Esquivel’s grandmother, Nancy Works of Apple Valley. With her granddaughter ineligible, Works has joined with other family members and friends in the struggle to find a donor for Ayden.

“I would love to find my amazing little fighter a new liver so he can continue to grow up and be the happy little baby he was before all this,” Esquivel said.''

So what happened? Ayden was placed on the waiting list, with approximately 16,000 other people waiting for livers.  On top of that Ayden was an infant, meaning the donor needed to be a child or another partial donor.

After a front-page story in the Daily Press on the search for a donor, dozens of Victor Valley residents contacted the hospital in hopes of being tested.

Mothers felt for Esquivel, with locals Berta, Gloria and Roberta offering to donate. Mark of Apple Valley was drawn to the donation through his own son, also named Ayden. Others such as Karen couldn’t donate, but wanted to offer their prayers and words of support to the family.

While the hospital processed the flood of requests, Esquivel’s mother continued reaching out to agencies that could help her daughter be allowed to donate.

She finally reached America’s Health Insurance Plans and was then contacted by the chief of the Children’s Medical Association. He told Esquivel that they’d approved her to be tested as a donor, and if the physicians agreed that she was a match, then they would approve the transplant.

Then another family’s tragedy became Ayden’s salvation, as a deceased donor was found to be a match Saturday night. The family rushed to the hospital to sign the consent forms, and the surgeon scheduled Ayden’s transplant for Sunday at noon.

The family was feeling optimistic Sunday morning. Esquivel posted an update on a Web site dedicated to Ayden at 8:42 a.m. that read: “Today, at noon, through the sorrow and generosity of another family, Ayden will be given a chance. They need to run one last test to be sure he is infection free and we will be moving forward.”

Ayden then took a turn for the worse, joining a statistic estimating that 14 people die each day in America waiting for a life-saving organ transplant, according to a 2006 publication by the Bioethics Department at Iowa State University.

“Our hearts are broken and our family is beyond comfort at the travesty of this whole experience,” Works wrote. “We are extremely grateful for the outpouring of support and all those who contacted the hospital to request information on becoming a donor.”

Ayden’s services will be on Friday at 3 p.m. at Forest Lawn in Cypress. Works has also set up an account at Washington Mutual for anyone who wants to help offset funeral expenses, under account number 3172369198.

So, Ayden got his wings on Sunday. Why? Because of a Medicare law.  Granted, I understand why we have this legislation in place, but shouldn't there be a parents consent form, or parental clause that allows a minor parent of a child on the waiting list to give a live donation?

My heart goes out to Ayden's family.  You are all in my prayers and I am so sorry to hear of your loss!  I'd also like to recognize the amazing people who stepped forward to be tested as a live donor and to the family of the other small child who was recently lost.  Your actions speak louder than words.

I urge all of you to consider becoming registered donors! Visit: DonateLife.net

Materials above taken from Insurance Stops Mom from Saving Infants Life and Goodbye Ayden

Dastardly Villains and Damsels in Distress

I know Sue Fink through the Sons of the Never Wrong. She’s a sweet person who we often hang with at Son’s concerts – and she’s a folk singer herself.

She’s a lot of fun, and little nutz, as demonstrated in the music video. It’s probably also why we get along quite well!

She emailed me one day and told me she was making a little music video of one of her songs – and asked me if I would be willing to play a part – to play the part of a “dastardly villain”… Laura was reading it over my shoulder and said, “You know – you HAVE to do this…” I knew I did…

I make my appearance about ¾ through the video – and I did all of my own stunts. This is the result:

Damsel in Distress from Sue Fink on Vimeo.

Here is the YouTube version...

I know it’s not really about organ donation – but for some of us recipients, everything is about organ donation. So many people have come into my life because of Kari… Some people have come into my life simply because I’ve lived long enough – others, because the path of my life has changed. Sometimes it’s just about fun – sometimes it has a deeper meaning… Sometimes it’s a combination of both.

Sue sent me a note telling me she wanted to include a sentence about each of the cast in her post – She wrote that she wanted mine to be: “Dastardly Villain” (Steve Ferkau) is a sweet man who fights the good fight… I told her that she didn’t really know how much the little sentence she came up with means to me, and I sent her a picture as explanation… I like when things seem to come full-circle…  It's like a little angel nudging me on the shoulder and reminding me she's around...

Kari’s Mom told me that in the months before she passed away, Kari was in a church and she came across a quote she liked – she wrote it down and showed it to her Mom when she got home. The quote is now inscribed on the back of her headstone: “I have fought a good fight, I have kept the faith.”

Across the pond...

I’ve posted about these two lovely ladies before – Emily and Emmie – they, along with their friend Oli, operate a charity in the U.K. called Live Life Then Give Life to raise organ donation awareness in the U.K. All three of them have cystic fibrosis – Emily and Oli have both received beautiful, new lungs. In the past few days, I’ve stumbled across a few precious things they’ve had a hand in…

This video is beautiful. Here is Emmie’s description:

A moving and eye-opening video from the UK charity - Live Life Then Give Life. It aims to create awareness of the number of children in the UK who are in desperate need of an organ transplant to save their lives. Set to a beautiful backing track, this slideshow highlights the plight of the children who die each year due to the chronic shortage of organ donors, in the hopes that more people will be motivated to sign up to give the Gift of Life to others

Watch it – go ahead and try not to cry… Can you imagine saving one of these precious lives when you leave this beautiful planet? Watch it – it will stay with you for the rest of the day…

And I’ll end this with a recent post on Emily’s pinkandsmiley blog. I love the way she writes – she makes me think, and she always makes me smile:

I heard this story on a factual, newsworthy programme* and I wanted to put it up here. Time and time again there are posts on the message boards I belong to about people crumbling and struggling, who see it as a sign of weakness that they need to reach out (yes I am aware of the slight pot, kettle, black situation here) so here is the little story; as a reminder to me, as a reminder to anyone else who ever struggles as to what exactly strength is. I know it's a little cheesy, but I just like the sentiment.

A little boy and his mother are out walking. The little boy spots a rock, points at it and asks his mum if she thinks he can lift it. "If you use all your strength then yes you can" his mum replies, so the little boy runs straight to the rock and grasps it firmly. He strains and struggles, and tries several times to lift it, but to no avail. He tells his mum he cannot lift it, but she replies again that he can, and then walks over to him where she also grasps the rock and together they lift it up. The mother explains to her son that using all your strength means enlisting the help of other people, of those around you who want to be there for you and support you.

So next time you are struggling....use all your strength.

*or it was on a cheesy American soap but I don't think that detracts from the point of it being rather good.

There… smiling???