HowHas

Joseph Edward Keller was born on a beautiful Sunday afternoon, on June 1, 1980. Our ‘Little Joey’ was the youngest of our four children. Joe was a very pleasant child to bring up. It always seemed we had the ‘perfect’ family. A parent’s ideal dreams were coming true. Tom & Elizabeth were both out of school, and pursuing careers. Mike, an easy-going junior in high school, and Joe, our ‘baby,’ was just as easy-going as his brother. Life was finally slowing down a little: only one baseball practice, instead of four!

On August 18th, 1994, all of that changed.

A tropical storm had passed through the area, and it had rained for days on end. Joe and four of his friends from school were bored after being stuck in the house for almost a week. He and his schoolmates called each other the night of the 17th, and decided they would get together. School was about to start in less than two weeks, and they felt they needed a chance to have some fun before it started. We live in the country, so they decided to go for a long bike ride, stop at their favorite swimming spot, and also doing some bridge jumping. It was a normal thing for them to do on summer day. It was shortly after noon when they decided they had to head for home. Joe was supposed to be home by one to let the Sears repairman in to fix the washer. When they were getting ready to come home, one of the girls that was with them decided to go back in swimming, when she did, she went in on the lower side of a low-head dam. The hydraulics of the dam pulled her under. Joe and his friend tried going in to save her. The other young man was much smaller than Joe, and changed his mind. Joe attempted to save the life of his schoolmate. He was not as lucky as she was. A low-head dam has a mind of it’s own, it decides how long to hold onto whatever it is that it has, and Joe was held under the water too long.

One of the boys ran to the campground across the road to call for help, while the owners of the campground came out to try to help. The paramedics were on the scene shortly. The paramedic that worked on Joe was my cousin Mark. He tried so hard to save Joe’s life that day, along with the other EMT’s, I will be forever grateful to them for their help. On the way to the hospital, they were finally able to get a heartbeat on him again. It was touch-and-go for the next few hours until he was stable. My husband, Dave, was called at work and told about the accident, the HR person took him to the hospital to meet Joe.

I arrived home about 4 PM. My sister, Darlene, arrived shortly after I got the news from my daughter that Joe was in an accident. My daughter, Elizabeth, was still trying to find her brother, Mike, and was planning on picking up Tom from work, and going to the hospital. They were flying Joe, via Life Lion helicopter from Hanover to York Hospital to be taken care of by the Trauma Unit.

Most of us arrived at the hospital at the same time. I will never forget the sound of Life Lion landing. We were met by the patient rep. and put in a room to wait for news. Dave was not there yet; he was being driven from Hanover to York. As we all gathered in this room, the doctor came in, and told us very bluntly that Joe was not going to make it. He said they had lost him at the creek, and several times after that, and he had no chance of making it. I remember sitting there, not knowing what to say. I thought he had broken an arm or a leg…not drowned! My son was an expert swimmer, how could that happen? I remember my oldest sister asking where he was and if we could see him, just to let him know that we were there, and he was not alone. I was speechless when he replied that it didn’t matter, he would not know we were there anyway. This went against everything that I had ever believed in. I asked the doctor if he was still alive and he replied, “Yes”, and I said, “Then there is still hope for him”.

The next few days were touch and go…many hurdles to cross, and me thinking that each day he made it through was a good thing, that he was going to pull through this, he was young, strong, and determined. We spent those days sitting with Joe, reading to him, talking to him, or just quietly sitting by his side, and praying.

The remainder of this story, can be read, by clicking onto Joe's webpage:

http://www.childreninheaven.netfirms.com/joesaccident.htm

- Janet Keller
Joseph's mother

My name is Steve Ferkau. I was diagnosed with cystic fibrosis on the day of my 13th birthday in 1973. I had been sick all of my life, but now we knew what the illness was – we knew the cause, and the prognosis. At that time, life expectancy of a CF patient was 14.

I remember living with my illness growing up. Though I was fairly active, I was also never as good as the other kids – I could never keep up with them. Not even the girls, which can be pretty humiliating as a young boy! Yet, I also felt incredible support from the kids around me… Most of them knew what I had – they understood the obstacles I faced.

I met my princess, Laura, in my mid 20s. Ironically, by that time I had come to terms with the idea that falling in love wasn’t in the cards for me – I had a lot of trouble with the thought of developing a relationship with another person, then leaving them. And, I knew that watching me go downhill and die of CF would not be an easy thing. As I fell in love with Laura, I had a number of difficult discussions with myself. I guess I decided that I deserved to be in love with someone. I’m glad I did, Laura has made all of my struggles worthwhile, and all of my joys more joyous.

An incredible doctor took care of me for 28 years – he guided me through so many obstacles… When we decided I should be listed for lungs, he told me that this would be the most difficult year of my life. Neither of us imagined I would wait almost three years.

I struggled for 40 years with cystic fibrosis. During most of those years I didn’t even know I was struggling – that was just how I knew life to be. The last several years waiting for transplant I knew I was struggling.

Sometimes I wondered or imagined how life might be without CF – what it might be like to breathe “normally”. I was not-at-all prepared for this. Breathing as I do now is better than my wildest imaginations!

I had four “false alarms” while I waited. Four times, four families, going through four devastating moments in their lives – reached out and tried to save my life. On April 8, 2000, the phone rang a fifth time. A family in Iowa was experiencing the most devastating moment in their lives. But, in the months before, their precious daughter had told them how strongly she felt about organ donation.

I didn’t know that Iowa family when I was transplanted – I learned about their precious daughter a few years later. I learned her name was Kari and she was 17 when she passed. I met her family and several friends a few years after that… They are a truly beautiful family.

My passion now lies in telling people about organ donation; and mostly, telling people about Kari.

I get to speak quite often about organ donation. I get to tell people about Kari – I get to show them her beautiful smile. I get to tell them about the life she’s given me.

I get to help donor families understand what they’ve done for someone. And, how we recipients feel about them and the loved one they lost. Speaking to donor families means the most to me – I want them to see how I feel about Kari and her family. I want them to understand there are people out in the world whose lives they’ve saved, who feel the same about them.

I get to help medical professionals and organ donation and transplant professionals see the result of their efforts. I get to tell them how grateful I am for what they do, and how grateful so many of us are. I’ve had so many of them touch my life over the years. Kari saved my life when I needed her most, but so many of these people carried me to her door, and helped carry her to me…

I get to help people considering organ donation understand exactly what donation does for others. And, show them that donors and donor families are heroes in the eyes of their recipients.

I get to give people waiting for an organ hope – hope that others will hear our message and someday save lives, including theirs… Hope that others will want to be someone’s hero when they leave this beautiful planet.

But most of all, I get to tell people about Kari – I get to help her smile and her beautiful spirit live on in so many hearts and minds.

I waited three years for Kari to come into my life. I know so many precious people waiting for lungs and other organs. When I tell people about Kari, I tell them how she felt and what she’s done for me. If enough people understand the goodness in organ donation like Kari did, maybe the pain and fear involved in waiting and wondering won’t be as great, or as long.

Jenn is one of my fellow contributors on our Revive Hope blog. Jenn was one of Kari’s friends who I met, and who I now adore. Meeting her and learning more about Kari and about Jenn has been one of the more wonderful things in my life. Jenn has developed an incredible passion for telling people about organ donation, and about me and Kari.

Jenn once told me that she thought the greatest fear Kari’s Mom has is that people will forget about her daughter. That will not happen on my watch – not while I’m breathing.

My husband, Ken, and I are proud parents of five children. Our two eldest children are athletic young men, David, twenty-two, a U.S Marine, and Glenn, twenty-one, a lifeguard and college student. We were pleasantly surprised when I became pregnant with Shivan (top picture) almost eleven years after Glenn's advent into the world. I prayed we'd have another child, so Shivan wouldn't feel like an only child. Imagine my surprise when Alaina arrived a little over a year later, then Lindsea (bottom picture) not too long after that. So, with one son entering college and another a sophomore in high school, we found ourselves with a couple of toddlers and a preschooler to raise, as well.

The girls were very healthy, as our sons had been throughout childhood. Shivan was born with a heart murmur that supposedly closed by age two. We were told not to worry about heart problems with Shivan, only to make sure when she began dental cleanings to take an antibiotic before and after treatments.

Dr. Bilal Harake performed an echocardiogram which showed Shivan had only about seven percent of typical heart function. A heart transplant must happen if she would survive. We waited about three-and-a-half months for Shivan to receive the gift of life on January 29, 2001. Doctors told us it looked like a virus had attacked Shivan's heart. We were told it didn't look like familial cardiomyopathy (genetically caused), but dilated idiopathic cardiomyopathy (viral-based).

Once home after all the follow-up heart biopsies at UCLA Medical Center, we thought life would get back to semi-"normal." We knew, though, that life would never be the same, as Shivan's pill case was filled with lots of pills she had to take three times a day. She'd have to take immune-suppression drugs the rest of her life.

A couple years went by. Lindsea got sick in early October with a flu that kept recurring. A flu bug rippled through the community at that time, so the pediatrician just said to let the flu take its course. It stopped, but started-up again. My husband's face literally whitened when he noticed the same bloated look and puffy abdomen. Amazingly, Lindsea fell ill the first Friday in October – the same timeframe as Shivan, when a doctor declared she needed a transplant. An ambulance arrived at Marian Medical Center to transport Lindsea to UCLA.

Lightning does strike twice. Unlike Shivan, Lindsea couldn't wait outside the ICU for her new heart. A large blood clot barely clung to her ventricle. She had to remain bedfast in the ICU. She waited forty-nine days for her heart and it was a perfect fit, thank God. Dr. Mark Plunkett, UCLA transplant surgeon, possesses, it seems, angelic hands.

We've been told that having two daughters with a successful heart transplant exceptionally rare, a one-in-ten-million situation. Now that two girls fell ill to a similar condition, it seems their heart disease is genetic, but we've been told nothing for certain. We don't even know the girls' diagnosis, but doctors are looking into this. Baylor University in Texas is involved in a study of cardiomyopathy and we’ve provided the girls’ blood samples.

Genetics is still a relatively new science. Even though the human genome has been mapped, researchers still work relentlessly to discover genetic markers that may give us a clue to what happened to our daughters.

Because of the unselfishness of heart donor families, our girls received sound, healthy hearts. All three of our daughters work hard at their homeschooling lessons. They love creative writing, illustration, and reading. Lindsea and Shivan are excited to take part this year in the World Transplant Games in London, Ontario, Canada. They’ll compete in swimming, track (50 yard dash), badminton, and five pin bowling (Canadian-style bowling). We are so proud of all our kids!

- Susan Friesen
dolphin_dancer@comcast.net

I had my first heart attack out of the blue April 17,1989. That was income tax day that year. It turned out that I had a blocked coronary artery from cholesterol. It immediately killed one third of my heart muscle. I changed my diet and lost about 45 lb, went from 245 to 200, and everything was fine till October 27,1990. Another artery clogged up and wiped out another third of my heart. At this point I had to remain in CCU in bed, as one third of my heart would not sustain me out of bed. I was in Mercer Medical Center in Trenton, NJ, and then transferred to Graduate in Phila. for catherization. They told me if I didn’t get a transplant, I would be dead within a year. So I went for it. I was transferred to Temple Univ. Hospital in December to be evaluated; they listed me at the end of the year. I was sent home but only stayed there over Christmas and New Years, then I had problems and went to Mercer Medical Center were I remained till April 30th, 1991. I did go home January 31(my birthday) and returned on Feb 3(my Wedding Anniversary) April 30th I was flown by chopper to Temple at about 9:00pm for a heart. I was prepped in OR and then the phone rang and they told me the heart was not good, so I was returned to CCU. The morning of May 1,1999 they were on the phone arranging transportation back to Trenton when another heart became available. That night I went through the same procedure but when the phone rang, they said it was a go and I went to sleep.

At this point I had deteriorated to about 150 lbs and could not even read a newspaper. When I woke up still on the respirator and my eyes taped shut, I felt like jumping right off the gurney. I started kicking my leg so they would know I was awake. A nurse whispered in my ear that I had my new heart and everything was fine, but I had to go back to sleep. She injected me and I went back to sleep. May 12th I was discharged and August 2 I went back to work running my business. I regained weight and have remained at about 185 to 195. Everything went fine except one bought of rejection that I had to be hospitalized for a few days.

Then I resumed my normal life till 1996 I caught the flu and was hospitalized for 12 days. A few months after that I developed heart failure and treated it until Oct 6,1998 when I went to Hahnemann and was listed for another heart. My doctor said she would have my kidneys monitored, as she expected them to fail before I was transplanted. Sure enough they failed and I went on dialysis 2 weeks before I received another heart along with a kidney from the same donor. That was Feb.21, 1999. Everything has been fine ever since. I am retired now and serve as chairman of Second Chance Heart Transplant Support Group, Inc. This group has a membership of 1100 heart transplant recipients. We are hosted at six heart transplant centers, Hahnemann, Robert Wood, Temple, Univ. of Penn, Lankenau and Jefferson. I also chair a local all organ transplant support group, Circle of Hope at Robert Wood Johnson, Hamilton. I manage Second Chance’s Web site. I also volunteer for NJ Sharing Network as a speaker and at health fairs promoting organ donation. I do some things for Gift of Life as well, but since I live in West Windsor, NJ and am on a fixed income, I do things in my local area, except for Second Chance. That is all for now, please feel free to contact me anytime.

Because of my heart transplant my wife and I and my oldest disabled daughter and her daughter and her daughter reside in our family home that we raised six children and a granddaughter and now our great granddaughter over a period of 52 years. If not for the transplant this family would have been on the street penniless. I was able to solve the many financial problems due to the fact that I continued to live.

- Richard (Dick) A. Harbourt
Email raharbourt@aol.com
You can check out Second Chance web site at www.geocities.com/schtgi/

Hello. My name is Bob Pitcock. I drove trucks over the road for twenty-nine years, prior to my transplant. I am now sixty-four years old and fully retired.

My history of heart problems goes back to 1985, when I had my first heart attack. In 1986, I had a second heart attack, followed by heart double bypass surgery. In December 1986 I went back to trucking on the road again.

In December 1988, while singing Country and Western music on stage at our local "Texas Opry Jamboree," I had another heart attack, right up on stage at the microphone. I was rushed to the hospital, stabilized, and I spent six days in the hospital. When I was released I went back to trucking again. Everything went fine for another twelve months.

In December of 1989 I had my fourth heart attack. This one was a whopper. My cardiologist suggested a heart transplant. The previous attacks had severely weakened my heart. Forty percent of my heart was damaged. I waited on the transplant list for nine months before I got the call from my Transplant Coordinator at St. Luke's Hospital here in Houston. She said, “Get your toothbrush and come on down, there’s a donor in Florida.” My coordinator knew that I had a great sense of humor, that’s why she threw the toothbrush bit in our conversation.

The following morning, I had seventeen kinfolks and loved ones on hand at the hospital to support me with hugs and tears. I went into surgery at 4:00 a.m. that morning. Three hours later, I was in Intensive Recovery. I stayed in the hospital seventeen days, went home with my new heart, and have been feeling great ever since. I haven't had any rejection episodes whatsoever.

One thing for sure, I have learned to smell the roses along the way and to be very thankful for my extended life. Sometimes, I really feel "Love" pouring out of every pore of my skin. I feel as though someone stood back and poured a bucket of sweet honey all over me, by golly. It's such a great feeling! I do, at times, think about my heart donor and his family in Florida. I really thank God for their compassion.

My medications consist of daily doses of 125 mg Neoral, 150 mg Imuran, 5 mg Prednisone, and 1 Baby Aspirin. A stent was placed in my heart artery in 1998. everything has been fine since then. I go back each year for my post-transplant check up. Since my first heart attack in 1985, I think that I've had around twenty-five catheterizations through my groin. It's gotten so routine that I just joke with my surgeon while he's doing his thing, and while I watch that image of my heart on the monitor.

I do my part to promote transplantation, which is something we all should do, because if we don't, who else will?

My heart was flown into Houston, Texas from Florida on a chartered jet. I printed some T-Shirts back then that said on the front, “MY HEART HAS HAD AN OUT OF BODY EXPERIENCE.”

I wrote this shortly after my transplant:

One's life, from beginning to end, is like a warm blaze in a fireplace from start to finish. Whenever a few logs are set ablaze, they seem to have a small gradual burn. When I see this, I am reminded of an infant crawling, then learning to walk alone.

The flames seem to get bigger and burn more briskly. This again reminds me of a youngster growing and experiencing life as it is, gaining knowledge and growing to adulthood.

At its peak, the logs in the fireplace seem to emerge into a roaring flame. This brings to mind the fast-paced part of life – the years when marriage, raising children, and working to keep life on track, takes up all of one's time. There never seem to be enough hours in the day. Life in this period is fully roaring, with many responsibilities. But, like the fire in the fireplace, life can be very warm and satisfying, if one chooses to let it.

Soon, the fireplace has only red hot coals, reminding me of retirement years. For extra excitement and a bit more happiness, one only needs to stir the red-orange coals for a little flame.

When the coals turn grey and cool, that means to me that we've gone to Heaven to meet our Creator. Our fire has burned out in this life.

One more thought comes to me, though. When I received a heart transplant fourteen years ago, it was as if God simply and with love . . . threw another log on my fire . . .

- Bob Pitcock, Magnolia, Texas
Heart Transplant Recipient
January 28th 1991
St. Luke's Hospital, Houston, Texas

My first association with organ donation came with a direct statement from my Mother..."Ya know son, you really should register to be an organ donor." I was 16 at the time and being issued my driver's license - ready to climb into Dad's Honda Civic for my first solo spin and barely able to concentrate on anything beyond what cassette I would listen to as I hit the open road. Since that day, the thought of actually being able to save lives without an ounce of effort as a registered donor has always stuck in the back of my mind.

Fast forward ten years later to 2006. All grown up and building upon my professional career in public relations, the opportunity arose to revisit the oft-neglected world of organ/tissue donation as the Campaign Manager for the Donate Life Illinois campaign. Having kicked off in January 2006, the campaign is an effort to register 3.5 million Illinois residents in the state's new first-person consent registry. The statewide effort falls under the umbrella of Donate Life America, which is coordinating all statewide efforts to pursue a national goal of registering 100 million people as lifegiving donors by April 2008.

Every person that registers as an organ/tissue donor has the potential to save up to 25 lives. If all goes well, 100 million people nationwide will be registered by April 2008...wow, you do the lifesaving math.

It is with my work with Donate Life Illinois that my eyes have been opened to a brand new world of sadness, excitement, anticipation, loss and new life. To attempt to explain just how tight-knit the organ/tissue donation community is would require a full-blown essay. Instead, I encourage you to poke around at the incredible swell of online support and advocacy that is pushing the issue to the forefront of the public sphere. From Jill to Moreena in Illinois to MisDee an ocean away, organ/tissue donation is an issue that affects us all. It is without doubt that you know someone who knows someone that has a personal tie to the issue.

There are now over 4,700 Illinoisans and 97,00 people waiting nationwide for a lifesaving transplant. It is sad and frustrating how quickly these numbers are increasing when the effort to help stop the loss of life is so simple. It is due to the hard work and dedication everyday of supporters, advocates and organ procurement organizations such as Gift of Hope Organ & Tissue Donor Network that we are working together to create an impact and generate change to this increasing trend.

Not unlike our dedicated college students, working professionals and online community of supporters, you too can make a difference. Illinois residents can take 30 seconds to register at www.IAmAreYou.org (due to the new law, you need to re-register post Jan. 1, 2006 to ensure your wishes as a donor). If you're not from Illinois, please visit www.shareyourlife.org and check out what you need to do to register in your state.

Don't waste an opportunity to help save others lives. You have a chance to provide others with a second chance at life...take it today.

- Scott Meis
Donate Life Illinois - Campaign Manager
www.iam-areyou.blogspot.com

Organ donation, just two words to most people but to me those two words mean that there is hope! As a child my family talked about organ donation, giving of oneself so that others could live. We never thought that one of us would need a new organ or become an organ donor. Talking about organ donation was a subject discussed at the dinner table as easily as saying our prayers before every meal. It was no surprise to anyone that at age 16, when I received my driver’s license, that organ donor would be placed on my new license. Not only did I have organ donor on my driver’s license but I also checked the box to donate $1 to our local organ procurement organization. Never in a million years would I have guessed that my life would change because someone I loved needed to live with the help of organ donation.

When one dreams of having children, you dream of that perfect little baby with ten fingers, ten toes, a beating heart and that beautiful baby skin. No one ever dreams of having a child with a serious medical condition. No one ever dreams of having a yellow baby. No one ever dreams of a life spent in and out of hospitals just to keep your baby alive. No one ever dreams of watching their baby grow into a walking, talking toddler wondering if they will make it to kindergarten. No one ever dreams of their school age child being teased because she has a scar across her belly or because she has hairy arms due to the medications she takes. No one ever dreams of having a child only to fear that every day may be their child’s last. No one ever dreams that their baby would need a liver transplant.

Organ donation to me means that I can dream of my daughter’s future without fear or at least with hope. Organ donation means that my son will always have his sister to love and will not fear attending her funeral. Organ donation means that I can watch my daughter enjoy life without hospitals in it. Organ donation means that my husband and I will be forever grateful to someone we don’t know but will live on in our daughter. Organ donation means that my daughter can live a normal life and dream of having babies of her own.

How has organ donation changed my life? Organ donation has changed the way I dream, how I hope and how I pray. The words organ donation are not just two little words, organ donation are words to live by, organ donation are words of LIFE.

- Laurie
My daughter, Ashley, is living with biliary atresia.
www.loveforashley.com