About Revive Hope

  • Revive Hope's focus is to revive hope by creating inspiration. This blog will have postings of inspiring stories about individuals directly affected by organ and tissue donation, provide information about organ and tissue donation, and inspire those who view the site to give hope through compassion!

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Be Inspired

Posted on December 16, 2009 by Melissa S

I had a revelation last night.  It's true, I have inspired others!  I go about my business of life post transplant talking about my story, spreading the word of donation, remembering Chloe and keeping this gift in the front of my mind.  My revelation happened because of a series events starting with....

1.  I got an E-mail from Ted who makes this blog possible via "My Angel Foundation"stating that our  little ole blog is  #11 (out of 100) in a list of resource sites for people affected by chronic illnesses.  I consider this blog a little story teller and to know that we have a lot of readers means that our stories are good.  Because they give hope and inspiration, the readers keep coming back (even if we slack off and skip a few postings).  Thanks to all of our fans out there. 

2.  Almost 2 years ago I began reaching out to a young woman in Canada, Natalie who was anticipating a heart transplant.  My doctors asked me to contact her because our stories are so similar, bad valve, bad heart = transplant.  Over time, we've developed a deep friendship via e-mail.  She got her heart and all along the way, we've shared stories and kept in touch.  This is an excerpt from her most recent e-mail to me:   
Well, Melissa...A year ago I did not talk about organ donation that much.  I still had to feel comfortable and find out how it actually affected me.  Now I can't stop talking about it.  I was just at the corner store the other day late at night buying milk.  The guy at the cash said.  Oh boy it's getting chilly what a pain, winter is here.  My response was, well a 1 & 1/2 ago I had a heart transplant and couldn't walk 2 steps without feeling I had ran a 5 hour marathon.  Now I am so thankful to be able to walk and breath this fresh cold air.  At least we are living and enjoying life.  Needless to stay, he took one look and said yup.  We should all have this outlook on life.  Thank you for sharing.
 
You have also helped me feel this way and I thank you for that.  I feel so blessed with this life and my close friendship with this Melissa Simon who lives in Chicago whom I have never met.  Thank God our hearts came on time and we could enjoy those simple pleasures in life and one day have a chance to actually meet one another face to face.

3.  Lizzie, who I've talked about many times before here on this blog - sent me an E-mail this week saying that I am an inspiration to her and so many others.  She always says this type of stuff because she's always got all of the right words for every situation in life.  For example, when I broke both of my elbows just one year after my transplant, I called her very distraught over the fact that I was completely immobilized.  She said "Oh Melis, some people just face more struggles in life than others."  We laugh about it now and I was lucky to only need a splint and not double casts! 

4.  My neighbor and close friend got a part time job at a local meat market and small goods store.  His first day on the job, he went into the store and inspected everything to report back to me what was safe and sanitary.  He told his co-workers "you had better wash your hand because my neighbor shops here and she had a heart transplant, and if anything happens to her, I'll kill you."  He's the sweetest, most un-intimidating person , so it came out of his mouth with a kind, yet serious tone.  And I was impressed that he even remembered how careful I have to be about germs, eating certain foods, and all of those things I talk about but really don't expect people to act on.  Ry%3D400Our neighbors were the first new friends I met, post transplant.  When they moved in next door to us, I was in the hospital and my dad came to tell me that the new neighbors were young.  We were thankful since the prior owner was very elderly and unable to care for the home.  Now we are just thankful to have inspired them to a point where they  makes my story a part of something as average as a day on the job.

5.  The same neighbor then told me that he liked my photo on the new Donate Life IL Website which was just released this week!  Check it out here and see the many faces of donation, including mine, Steve's and Charles Tillman's.  He said at Christmas he was going to show his entire family and make sure that they sign up as organ donors if they aren't already.  He was going to talk to them about his wish to be a donor.  And, on top of it all - he and his wife ordered Organ Donor License Plates! 

I think most of these events leading up to my revelation do revolve around the new Donate Life IL site.  It really hits home for those who listen to you talk about this stuff --  to actually see your face on the page of a web site promoting it!  It shows that I'm not afraid to be out there, in the public space, showing how deeply I feel about this cause.  So thank you to Scott and companyfor the chance to make my words stick!  The new site is the glue holding it all together in the minds of my "fans."

Bottom line, even our every day duties can involve some type of inspiration.  I just choose for mine to include spreading the word about organ donation.  Stay tuned for more about Natalie and more about my dedication to Chloe on the Donate Life Float!  Thanks for reading. 

DL IL DL 2

Family Circle Garden - Rose Dedications...

Posted on December 10, 2009 by Steve Ferkau

DLFamilyCircle



I’m stealing again… A few days ago, Scott posted about the Donate Life Rose Dedication Program, and about our Gift of Hope Illinois float rider, Anne Gulotta. She wrote a beautiful little note about the Family Circle Garden – about the opportunity to participate in the Donate Life Float and the Rose Parade by dedicating a rose on the float to a donor, donor family, recipient, or someone touched by organ donation:



RHAnnie A beautiful event will take place on New Year’s Day on the Donate Life Float.

Twenty four float riders will gather at 5 a.m. Pacific time to take the ride of their life. Among all the fragrant and colorful flowers that cover the 55 foot long Donate Life float, a special area will be dedicated to the Family Circle Garden. The Family Circle Rose Dedication Program offers families touched by organ and tissue donation the opportunity to honor their loved ones by dedicating a rose that is tagged with a personal message and placed in the Family Circle Garden. The Garden is a living memorial of the Donate Life Rose Parade Float.

Families and organizations can participate. Good Shepherd Hospital in Barrington, Ill. is one of many participating hospitals who will be participating. This is a special event, and there will be a ceremony in Pasadena focused on placing the roses on the float. Viewers will be fixated on the majestic Phoenix which rises 30 feet into the air. The extraordinary display of roses will also be a highlight.

As an Ambassador for Gift of Hope and Donate Life, my role is to promote organ donation. In doing so I would like to extend to you my service and offer to place a rose(s) in your honor of the person you are honoring. If you have never dedicated a rose on the float, I strongly urge you to do so. There will be over 3000 roses dedicated, and I hope to be photographing and documenting the event. I hear it’s a tear-jerker.

It’s easy to sign up for the program. You can read dedications that have been posted. If you have already dedicated a rose(s) let me know who you are, and I will ask permission to place the rose in your honor.

The Rose Dedication program has been a way for me and my family to honor Jay and the lives he saved. A woman by the name of “Rose” once said; “We a make a living by what we get, We make a life by what we give.”

That’s what organ donation is all about. Giving life to others. So, it’s important that we occasionally honor those who’ve been touched by organ and tissue donation.

~ Anne

RHSteveRoses2009


I was able to do this last year – I was able to place roses for Kari and Chloe, and for several people who are very special to me. Annie’s note prompted me to do what I’ve been meaning to do for two or three months now – I finally did it today. Can you believe that I’m only allowed 200 characters for the dedication? I sneeze more characters than that… Maybe that’s why I procrastinate – I find it difficult to say all I want to say in 10,000 words, much less 200 characters. This is the dedication I sent today:

Kari, It’s been almost 10 years. You’ve given me so much more than breath and life; you’ve given me your friends. They share as if they were with you yesterday; they’ll never forget you. Love, Steve



RHKariDedication2009 You too can dedicate a rose to someone you’ve loved and lost, or someone who saved your life or saved the life of someone you love. There are a wide range of packages that include keepsakes and remembrances, and you can find them and order through this link to the Donate Life Family Circle.



Video from our 2009 rose dedication ceremony:




A silent killer

Posted on December 08, 2009 by Jenn Amendt

As promised in my blog last week I thought I'd post a bit about Deep Vein Thrombosis (DVT), or blood clots.  Don't shrug this off! Blood clots are serious, and sometimes deadly! According to PreventDVT.org, it is assumed that 2 million people each year suffer from DVTs, and 10,000 die from complications of DVTs called Pulmonary Embolisms (PE)-more than breast cancer and AIDS combined.

Quick definitions from Mayo Clinic:

   DVT

Deep vein thrombosis (DVT) is a condition in which a blood clot (thrombus) forms in one or more of the deep veins in your body, usually in your legs. Deep vein thrombosis can cause leg pain, but often occurs without any symptoms.

Deep vein thrombosis can develop if you're sitting still for a long time, such as when traveling by plane or car, or if you have certain medical conditions that affect how your blood clots.

Deep vein thrombosis is a serious condition because a blood clot that has formed in your vein can break loose and travel to your lungs. However, many deep vein thromboses disappear on their own.

    PE

Pulmonary embolism is a condition that occurs when one or more arteries in your lungs become blocked. In most cases, pulmonary embolism is caused by blood clots that travel to your lungs from another part of your body — most commonly, your legs.

Pulmonary embolism can be life-threatening, but prompt treatment with anti-clotting medications can greatly reduce the risk of death. Taking measures to prevent blood clots in your legs also can help protect you against pulmonary embolism.

So, you might be thinking "I'm healthy, I've got nothing to worry about!" Let me remind you that you are wrong, and naiveness can be a deadly mistake.  ANYONE can be affected by a blood clot. Prior to my DVT, I was at the peak of health.  I worked out 5-6 times a week. I could run miles at a time and thought nothing could get me down. Obviously, I was wrong and I want to make sure no one else makes that same mistake!

DVTs are not discriminatory they can cause anyone (healthy or sick) trouble.  Here is a list of risks that  may cause some people to be affected more than others, from Mayo Clinic:

  • Sitting for long periods of time, such as when driving or flying.
  • Inheriting a blood-clotting disorder.
  • Prolonged bed rest, such as during a long hospital stay, or paralysis.
  • Injury or surgery.
  • Pregnancy. 
  • Cancer. 
  • Heart failure. 
  • Birth control pills or hormone replacement therapy.
  • A pacemaker or a thin, flexible tube (catheter) in a vein.
  • A history of deep vein thrombosis or pulmonary embolism.
  • A family history of deep vein thrombosis or pulmonary embolism.
  • Being overweight or obese.
  • Smoking.

Some additional risk factors from PreventDVT.org:

  • Respiratory Failure
  • Infectious Disease
  • Age > 40

In about half of all cases, deep vein thrombosis occurs without any noticeable symptoms.

When signs and symptoms of deep vein thrombosis occur, they can include:

  • Swelling in the affected leg, including swelling in your ankle and foot.
  • Pain in your leg; this can include pain in your ankle and foot. This pain often starts in your calf and can feel like cramping or a "charley horse."
  • Redness and warmth over the affected area.
  • Pain or swelling in your arms or neck. This can occur if a blood clot forms in your arms or neck.

The warning signs of a pulmonary embolism include:

  • Unexplained sudden onset of shortness of breath
  • Chest pain or discomfort that worsens when you take a deep breath or when you cough
  • Feeling lightheaded or dizzy, or fainting
  • Coughing up blood
  • A sense of anxiety or nervousness

If you have any of the symptoms listed above, do not delay, seek medical attention promptly.  If you have shortness of breath and are coughing up blood go straight to the emergency room.

To prevent blood clots make sure to get up and MOVE!  If you have long periods where you are sitting, get up and stretch your legs, and if you can't sit at your desk and flex your calf muscles. It is also very important to drink lots of water...especially if you are on a long plane trip.

The most important advice I can give is to know the symptoms of a DVT/PE and listen to your body! I'm extremely grateful that I did!

Where have you been?!

Posted on December 01, 2009 by Jenn Amendt

I'm not sure if many of you remember me, but I am a blogger for the My Angel Foundation, or use to be. I plan on blogging more frequently now, as my life should be settling down in a month!

I've had quite the last year, or really 6 months, and have struggled with finding a balancing act for it all.  So, I'll give you a little bit of where I've been and offer my apologies for the long absence.

It started the last week of May, when I was out for a run I noticed I was a bit out of breath. I shook it off and chalked it up to springtime allergies. The next day I had a charlie horse in my left calf, which I could not seem to stretch out.  I flew to Dallas, to spend the Memorial Day holiday with my fiance. Yet, the charlie horse seemed to get worse with each passing day, and by the end of the week I wasn't sleeping at all, as the Tylenol and ice pack were not relieving any pain. On Saturday morning, May 23, after a night of absolutely no sleep and pain so strong that I can not describe, I had Joe take me to the ER.

They did an ultrasound of my leg and found that I had a blood clot, or DVT, which consisted of most of my left calf, and 4 inches above my knee. They admitted me and that night did a CT of my lungs, only to discover multiple pulmonary emobli (PE) in my lungs. I ended up staying in the hospital in Dallas for 6 days and am still on the mends to a full recovery...I hope!

The weeks and months that followed were trying and scary, but I have to say I am thankful for my friends and family who have been such an amazing support system.  Steve was so sweet!  He called me when I was in the hospital to give me some tips on how to make it through the week...and mainly those scary hospital nights.  It was all new to me...being sick, because I was and had been an extremely healthy person. As I've said, my recovery has been pretty slow, and I'm not quite back up to full speed running, but I plan on starting yoga soon!

I also plan on blogging a post on DVTs next week as they are very common and deadly threat!

Not only did I have health issues, but I was also trying to plan a January wedding and finish my last 2 semesters of graduate school. As of yesterday I completed my graduate degree from Drake University in Public Administration...so watch out world, HERE I COME!!! (well, technically I haven't gotten my grades back, so I don't know if I passed all my classes yet)  Again, I couldn't have done my studies without the love and support from my amazing family and friends! :)

So, that is where I've been and in 5 weeks I will be getting married and moving to Carrollton Texas!

I plan on blogging on a more regular basis now that I've got a couple things off my shoulders!! Thanks for all your understanding, support and prayers!!


Love,

~Jenn

He never stops giving thanks for the gift of life...

Posted on November 26, 2009 by Steve Ferkau

This afternoon, we’ll have our Thanksgiving meal at my little sister, Karen’s home. Mom will say grace – she usually does – and at the end of her prayer, she will give thanks for a 17-year-old girl and her family. She does this on Thanksgiving – but not only on Thanksgiving – we hear her do this at every meal we have with her. And often enough – she stumbles over a few of the words while she holds back tears. Her son, who she likely thought would not live that long, is here, but the thought of losing him has probably crossed her mind several times. She did not have to experience that because of another family who lost their precious daughter, and had the courage and compassion to follow through on her wishes.

Two weeks ago, I met a man who wrote a beautiful little column on the tavern/restaurant where Laura and I and our friends go regularly… Laura and I had our wedding reception there twenty-some years ago and we are there for breakfast quite regularly. Many of Kari’s friends have been there with us too. He wrote about Blackie’s… Carm, one of our regular waitresses there pointed him out when we had breakfast a few weeks ago and we stopped over to thank him for writing the article. Apparently, Carm had already suggested to him that he might want to check out my story but, before he could really ask, my wallet was already out and I was showing him pictures of Kari… I met him for lunch at Blackie’s a few days later – this is his Thanksgiving column:


SunTimesBanner



He never stops giving thanks for the gift of life
Don Terry, Chicago Sun-Times
Thursday, November 26, 2009

Don_terry Every Thanksgiving, before the turkey gets carved and the sweet potato pie is pulled out of the oven, I make a thankful-for list in my head.

This year it includes my thanks that my mother is almost 92 and can still pick up and carry her 2-year-old great granddaughter, Little Miss Hurricane.

I'm thankful that my beautiful wife still laughs at most of my jokes and that I have more hair than my brother, although he will argue the point down to the last silvery strand.

I'm also thankful that my job allows me to meet a guy like Steve Ferkau, and through him, the deceased Iowa teenager who saved his life.

I met Steve for lunch the other day at Blackie's in the South Loop. When his grilled cheese sandwich and coke arrived, he pulled a plastic medication box from his pocket and popped a few of the 35 pills he takes daily to survive.

He has diabetes and high blood pressure. His kidneys are beginning to "go south" because of all the medication he has to take.

"By the end of the year,'' he said, "I could be in kidney failure."

Yet, as far as he is concerned, every day is Thanksgiving.

"I've smoked the odds," he told me, with a huge smile.

Ten years ago, Steve needed an oxygen tank to breath. It took him 25 minutes to walk two blocks.

He was 40, and he was dying of a lifetime of cystic fibrosis. The only thing that could save him was a double lung transplant.

He was placed on a waiting list. Four times he received the call to Rush hospital, told that a donor had been found.

"There were four false alarms," he said. "The first time was devastating. It happened a week after my father died."

The fifth time he was called there was a perfect match. A 17-year-old girl from a small town in Iowa had died the day before her junior prom after a blood vessel burst in her brain.

The girl was a star on her high school volleyball team. Her strong heart went to a 50-year-old woman. Her powerful lungs went to Steve on April 8, 2000.

Six days after the surgery, Steve was released from the hospital. Ten weeks after that he was back to work at the Chicago Stock Exchange.

"I have not called in sick in the nine years since then," he said.

Steve eventually learned the girl's name, Kari Westberg. He and his wife, Laura, got to know her parents and some of her high school classmates. He visited Kari's grave.

"I think of her when I get up in the morning and when I go to sleep at night," he said. "She didn't die because of me, but I am alive because of her."

For the last eight years, Steve has helped raise nearly $200,000 in Kari's honor for lung disease research by climbing stairs -- 94 stories at a time -- in the "Hustle up the Hancock" in February.

The first time he hustled up, Steve raised $9,000 in pledges. He was climbing by himself then. Over the years he has been joined by dozens of teammates. They call themselves Kari's Klimbers.

A group of Kari's friends from high school travel to Chicago to climb with Steve and Melissa Simon, 29, a heart transplant recipient from Westchester, who made the climb for the first time last year.

"I had quite a few of Kari's friends cheering me to the top," Melissa said.

It took her 32 minutes. It usually takes Steve longer because he stops to talk with volunteers along the way, thanking them and showing them the photograph of Kari he always carries.

Steve has started training for this February's Hustle by walking the stairs of his South Loop high rise. He's trying not to think about his deteriorating kidneys.

If someday Steve needs a kidney transplant, one of Kari's friends has volunteered to give him one of hers.



Just so you know – my kidneys are “heading South”, but they’re still in pretty good shape – I still probably have some years out of them, but you just never know… And though Rush took care of me up through transplant, I received Kari’s beautiful lungs at Loyola – I probably misspoke in the excitement of telling my story… As anyone who knows me is aware, I do go off on tangents now and then when I chat!

I have more to be thankful for than most – and among those many things I’m thankful for, I’m also thankful for people like Don Terry, who take the time to tell stories about others. And I’m thankful for Kari, and the family who raised her and instilled in her how special the gift of life truly is…



When you’re giving thanks throughout this season – think about the gifts you can leave for others when you leave this beautiful planet… Think about organ donation.




Thinking & Remembering Season

Posted on November 25, 2009 by Melissa S

Thanksgiving marks the beginning of my thinking and remembering season, for it is at this time of year - all they way through January that Chloe and her family are on my mind in so many ways.  From laughing when I see my dog jump through four feet of snow and wondering if Chloe would do the same, to not even really wanting any presents at Christmas since she's given me all I need....the list goes on.  I've been a little quite on the blog but am inspired because of this season and because of them, as they have given me a gift to be forever thankful for.  It's allowed me to see other things in a new light with lots of sparkle and I'd have to say, has made me thankful for things others take for granted.  Just yesterday I saw a lady block an entire intersection with her car to let in a mom van, filled with kids.  Instead of honking (I did think about it), I figured that it was part of the season.  Everyone out and about in a jolly mood.  And me in an even jollier mood. 

And there are the easy things, like being thankful for Dave who is the highlight of my day, everyday - and for my family who has been by my side and made all of my struggles seem like a cake walk.  I had the joy of celebrating my Papa's 95th birthday with him just a few weeks ago.  I have my health and so does he, along with many friends and a large extended family who attended the celebration.  My friend who has been waiting for a transplant for over one year, got his new heart and called me just before the surgery to tell me the news.  I was so touched.  I also re-registered for the Hustle up the Hancock (Whoop Whoop) and feel blessed to be able to have a heart, healthy enough to accomplish this athletic feat.  I'm honored to know Steve and to be a part of his team, to know Kari's friends and to get a sense of what her life with them must have been like.  I'm thankful when I hear things about families who donate, like just this past week when a professional boxer from Chicago saved his cousin and so many others with his donation.  I'm happy with others notice how important these donors truly are. 

This Thanksgiving, in fact, Steve and Kari's Klimbers will be featured in a Sun Times article -- so check back for more details.  A reporter contacted Steve and other team members, including myself, to find out what this cause is all about.  And anyone who reads this blog regularly knows that we have more to say on the topic than can be said in just one article, but we hope to be another voice out there promoting not us, but our donors.  We climb for them, we write here for them, we are thankful because of them.  I hope you are too.  If not, remember to be thankful for something tomorrow.  Happy Thanksgiving.

JackO[1]

  

What "Thanks" Means to Me...

Posted on November 24, 2009 by Steve Ferkau

I'm just outright stealing this from Scott over at I am. Are you? And I will be stealing in the future too - but maybe in the future I'll just reference the post and link you over there... Scott's post is a note from my friend Annie, who gets to ride the Donate Life Float in the Rose Parade this coming New Year's Day. Scott will be posting messages from Anne periodically up to, and through her ride on the float. I got to tell my stories last year (with Scott's help too)... I want Anne to have her chance to tell her stories this year!  Here is a link to Scott's post, "What 'Thanks' Means to Me



Back in August, we unveiled Illinois’ 2010 Donate Life Rose Parade Float Rider, Anne Gulotta. She will be paying tribute to her husband Jay, who was a donor in 2002 in addition to honoring Cameron Chana of Clarendon Hills, Ill. who was a donor earlier this year. Both Cameron and Jay will be represented through floragraphs on the Float.

From now through December, we’ll feature a series of posts from Anne and the Chana family to help provide insight into what it means to honor organ/tissue donors and help promote the issue on a national scale through the Float.

At previous meetings with Anne, she has continually mentioned the theme of “thanks” in regard to the feelings that arise when we think of those that have given the gift of life. In light of Thanksgiving, I asked Anne to provide some further insight on the theme.

Thank you Anne and Happy T-Day and safe travels to all!

-Scott

What "Thanks" Means to Me

RHAnneNov2009 I’m very excited to share my journey with you to the 2010 Rose Bowl Parade. As you may know, Steve Ferkau has passed the baton to me this year, and promised to teach me the crucial parade float crowd wave. I’ve known Steve since 2005 when we met after a photo shoot for the annual Gift of Hope calendar.

Soon after, Steve and I were presenting together, quickly earning our reputation as the Dynamic Duo. I talk about my experience as a donor family and wife, and Steve talks about the lifesaving double lung transplant he received from his donor, Kari. For that he is grateful, and gives thanks every day of his life.

You may have seen a rendition of the float A New Life Rises. A phoenix rises from the ashes bringing hope to others. My son JR is an aspiring singer songwriter. He said to me one day; “Mom, in memory of dad and in honor of the lives he saved I’m writing a song.” The melody came quickly, but the words did not. How would he express the loss of his father, and still honor those who received the gift of life? It was pretty easy for him once he gave it some thought, and soon “Thank You” was written.

In just a few days we will all give thanks to the bountiful meal put in front of us. At our house we are pretty traditional. Turkey, stuffing (two kinds), potatoes (two kinds), and a bunch of other stuff including homemade pumpkin pie. It’s a tradition in our house to go around the table and give thanks for something that has brought meaning to our lives. JR puts it eloquently in the song when he writes and I paraphrase; ” Of all these thoughts holding me, I feel strength in belief of a new life rising out of me, I can see hope in what I need, a purpose driving me.”

After Jay (my husband of 18 years) died I felt very alone, but soon I was involved with Gift of Hope delivering a message of hope, love, and strength. I’m grateful for the strength to tell my story, and the purpose that now drives me to tell my story. Sometimes we need to reach deep into our souls to look past hurt and grief to find the good and be thankful.

Jay saved many lives. His left kidney recipient is Julie. Julie would not be alive today if it wasn’t for the gift of life Jay gave to her. I’ve gotten to know Julie quit well, and I will write more about that later. I give thanks to Jay every day. Julie is an extraordinary human being. She is kind, loving, and strong. Julie, her husband Ed, and all their friends and family give thanks to organ donation, because Jay lives on. Julie is a testimony to that.

Organ donation has a ripple effect. So many lives have been touched by the gift of life that one person gave. Jay’s heart was given to a 55-year-old man, his right kidney to a 16-year-old girl, and he gave someone sight. He donated tissue too and part of his liver was donated. Life carries on, and the relationships I have formed in the past seven years are precious. I am very close to JR and my daughter Elizabeth, and although I lost my best friend and husband, I have a new friend in Julie. I say thank you to them all.

Enjoy this holiday season. Eat the turkey and savor the pumpkin pie, and when you wake up each morning, give thanks for something in your life.

-Anne





Twenty Percent... and "I was here."

Posted on November 19, 2009 by Steve Ferkau

I’ve been chatting with friends and other recipients and lately, the idea that I’m approaching the ten year anniversary of my transplant comes up often – yup, it’s still about five months off, but it’s still coming up… For those who don't know, ten years is a good, long ride for lung recipients!!!  And walking home after one of those chats, it dawned on me that 20% of my life has been with her lungs. She’s given me one fifth of my life – and in a way I’d never imagined possible. Not that there was anything wrong with the other four fifths – they were pretty wonderful… Those last few years before I was given her lungs were a little rough, but there was still wonderfulness in those years too. But this last 20% has been beyond my wildest imagination… And she’s given me almost half of my life with Laura. We’ve been married just over 20 years – and though Laura watched me crash and burn 12-13 years ago – these last 10 years have been beyond amazing. I know there are moments when she wishes I’d just shuddup, the extra oxygen did seem to inspire a motor-mouth...  But none of us has ever associated being quiet with this gift…

Can you imagine a gift like this? Can you imagine a fifth of your life as a gift? Half of your marriage as a gift? And not just a fifth or a half, but a truly amazing fifth and half… A fifth and a half that make me tear up just thinking about it… After struggling through four-fifths and not even truly understanding I was struggling, because it was just life – breathing like I do now is what I was always lead to believe heaven would be like…

And do you know how many friends I’ve met since this gift – how many lives have touched mine? Not only friends I’ve met on this journey – but friends I’ve met because of her – her friends and family – and they’re more precious to me than you can possibly imagine…

I'm not alone in how I feel.  This is how so many recipients feel about the people, and the families who save our lives...



On another note – I fell in love with a song these past months… It was written by Brice Williams and performed by Lady Antebellum, and titled “I was here.



You will notice me
I’ll be leaving my mark,
like initials carved in an old oak tree
You wait and see
Maybe I’ll write like Twain wrote
Maybe I’ll paint like Van Gogh
Cure the common cold, I don’t know
But I’m ready to start cuz I know in my heart…



When I first heard the lyrics I welled up, and I wondered what Kari would have been, and what she’ll let me become… I immediately thought of my friend TC, over at donorcycle – she wrote the most beautiful thing I’ve ever read about Kari titled “Legacy.” TC touched on that – on what she might have been… When I heard the first verse, I wondered if I’m her initials carved in an old oak tree – if I’m a mark Kari left behind... I hope I am.



Cuz I know it’s my destiny
To leave more than a trace of myself in this place

I wanna do something that matters,
say something different
Something that sets the whole world on its ear
I wanna do something better,
with the time I’ve been given
And I wanna try, to touch a few hearts in this life
Leave nothing less, than something that says
“I was here”

And I know that I,
I will do more than just pass through this life
I’ll leave nothing less than something that says
“I was here”



Is there a better way to leave something behind, that says you were here, than organ donation? A better way to leave more than a trace of yourself in this place, than saving a life, or several lives? Is there a better way of touching a few hearts in this life, than giving someone a fifth or a half of a life or marriage as a gift? I think it’s a beautiful song – here is Lady Antebellum’s version:





Kari Volleyball 1999 I hope that when others look at me, they see me as nothing less than something that says – She was here.











Basic human kindness in the most extreme degree...

Posted on November 12, 2009 by Steve Ferkau

I follow a number of blogs and other sites revolving around organ donation, lung transplant and whatnot… One of the blogs I follow is written by a girl up in Canada named Bree… It’s titled The Blog Blog – subtitled, When life hands you an illness… Spread it.  I’ve been following it for quite a while – I love reading her thoughts, and her wit and sarcasm… There were so many times I understood how she might have been struggling or suffering – but she had me doubled over laughing with some of the thoughts and antics she wrote about…

After a long wait, and watching her celebrate people around her getting their lungs, she got her lungs in August. Reading her journey through recovery has been a lot of fun – and more than anything, I always smile when I see how often she circles back and brings up the person who saved her life – her donor…

She titled a recent post, The last of the summer days… I thought these were a couple of beautiful paragraphs:



Tonight also saw me utilizing these beautiful creatures called lungs. I took the dogs for a walk with both parents and me and Madyson ran a few times. RAN. I've already run, but still, 3 months ago i was still out of it from surgery. Running was not the first thing on my mind. I'm pretty sure nothing was on my mind but the pain i was in and how much i wanted food. And it was as Maddy and I were running that I had this thought: here I am, breathing with someone else's lungs. Unlike a liver or a kidney, where you can't feel them as they work, with lungs, you can. You can consciously make the effort to inflate and deflate them. I can inhale as deeply as i want, and hold it, and hold it, and hold it, all on my own will. But these aren't mine realy: i wasn't born with them. They were entrusted to me b/c my donor was awesome and had the compassion to save others lives in the event of their untimely death.

Again, 'thank-you' fails to encompass how this really is for me. You can't thank someone for that. You just can't. I ran tonight people, and I walked 100 stairs and then some. You cannot wrap that in a box and place in under a tree or anything. It is basic human kindness in the most extreme degree. It may seem simple but it was the most beautiful thing I could think of, on one of the most beautiful days of November.



I have nothing to add, other than I know how she feels…



Lions and Tigers and Bears... And Bear Cubs...

Posted on November 06, 2009 by Steve Ferkau

I’m picking this up from Scott over at I am. Are you? Yesterday he posted about a commercial for Donate Life Illinois featuring Chicago Bear’s cornerback, Charles Tillman. His precious little Bear cub – his daughter Tiana – at three months was diagnosed with cardiomyopaty in May of 2008. In August, 2008, she received a new heart…

Charles has since become a vocal advocate for organ donation… Here is the commercial they produced:





Scott posted a recap of the video shoot a few weeks ago… And here is an August, 2008 story on the Bear’s website about the Tillman story…