I've known Allen for nearly 8 years. He is a member of the congregation Mike serves. Allen's wife, Gwen, sings on the Worship Team so Allen was usually at church early for her. I was usually at church early with Mike and so while we waited, we visited. Eventually he became the sound man and I was graciously invited to join the Worship Team, so we don't have the long conversations of those early years, but he's always available for a hug when I arrive at church.
I came to think of Allen as a friend. I think we know each other pretty well. When I first thought of interviewing people, I thought of Allen. He grew up in Nebraska. His family's business was a mortuary and I think they lived above it. At a very young age he was helping his father with that business.
Allen's own business was the carpet business. Unfortunately, he was already retired when I needed carpet! He was also quite ill this summer when we were going through our
carpet drama so he didn't hear about most of it until later. Even so, he had some helpful information for me.
When Allen tells you he's had a change of heart, he means it quite literally! He is a heart transplant patient and has endured the amputation of both of his legs as well. Yet, he is known for claiming that he is "utterly fantastic"!
Allen is a busy man. He's very active in many aspects of our church. He and Gwen have a kazillion grandchildren and they are quite involved with them. Allen is a skill craftsman with wood. Allen uses some of his time to share his experience with others. He encourages other amputee patients and he teaches people about organ donation. The following are his own notes from a speech he gave recently. I've not changed it and I think through it you will know Allen a bit better...
((((“”””Allen’s Story””””))))
Beginning April 21st. 2003
1/28/12
Organ and Tissue Transplants offer patients a new chance at Healthy, Productive, and Normal lives and return them to their Families, Friends, and Communities. “”YOU have the Power to change SOMEONES World by being A DONOR.!!!!!!!!!!!!(“” ITS ABOUT LIVING!!!!!! ITS ABOUT LIFE!!!!!!”)!!!!!!!!!!!!!!
!!!!!!!!!!!!!!!ITS A MIRACLE. !!!!!!!!!!!!!!!!IT’S A GIFT..!!!!!!!
!!!!IT’S THE POWER TO TRANSFORM LIVES.!!!!!!!!!!!!
Every day, organ and tissue donors give the ULTIMATE gift
!!!---THE GIFT OF LIFE---!!! To someone who would not survive without a transplant.
!!!!Thousands of Americans wait and hope for the news that a vital organ is on the way. For too many,- Time JUST runs out.
After having nausea and mild vomiting for three days, the 21st of April 2003, {[(the day after Easter)]} I suffered a massive heart attack in the ambulance on the way to the hospital, the fireman and paramedics when arriving at the house did an EKG and said I hadn’t had a heart attack, but they were going to take me to the hospital as a precaution. My wife “Gwen” recounts the day like this; On Good Friday with tears in our eyes we see our son-in-law Jim off to Iraq to serve his country, and on Monday, I am picking up trash with the preschool children and the next minute I am calling 911 to get my 58 yr. old husband to the hospital. I kept thinking this does not happen to us. It only happens to others and we read about it in the paper. We are told he is fatal, but he was only throwing up. No chest pain, no arm pain. What do they mean? Is my husband going to die. All I could do is pray and plead. Emergency angioplasty and stent placement in two separate locations, balloon pump, and by-pass surgery did not work. After 2 days in the Casper hospital my family was told that the only chance I had to live was to fly to the University of Utah Hospital in Salt Lake City, Utah. The 23rd of April 2003 I was transferred by air ambulance , with a plane full of equipment and nurses and no room for any body else, to the University of Utah Hospital. After being stabilized and my lung functions improved over 24 hrs., the 24th of April an LVAD (an artificial heart pump) was placed in my chest, the heart is not removed, the LVAD takes over for the functions of the left side of my heart, this was the 1st of my open heart surgeries, and lasted app. 8hrs. When trying to close. The flows from the heart pump decreased and it was decided to leave the chest open & come back at a later date for closer. Three days later April 27th back to surgery for closer of the chest. May 5th back to surgery for Bilateral amputation of both legs below the knee, because of gangrene, which developed from an allergy to heparin. This was the hardest decision my family had to make, but the Doctors told them you always choose life. Through all of this time (35 days) I was unconscious, all of the decisions were made by my wife, children, and relatives.” I think they made the right choices“. May 28th I developed blood clots in the lungs from all the surgeries, back in ICU for 4 days. The blood clots were dissolved, and now for therapy. With no feet and part of your legs gone, your prosthesis feel like you are walking on stilts. Just getting them on and leaving them on for a few minutes took so much work. Now to try and learn to walk. The therapist said they had never seen any patient with this much stubborn attitude. They would have other patients come in to talk to me so my attitude would rub off on them. Day after day learning to walk again. There were days I really just wanted to stay in bed and quit trying, but my faith in GOD kept me plugging along. The cards, letters, phone calls, and news that prayer chain, after prayer chain ,after prayer chain were praying for me would spur me on to try a little harder.
My family was told numerous times that I was fatal. I died and was brought back to life 4 times in Casper. Upon arriving at the University of Utah Hospital my wife was told by Dr. Stringham that he had never seen any body that sick that had ever lived, and I had 0 chance of living. After placement of the LVAD, in my chest, I lived and the doctors were amazed. But they still gave us no hope. I was getting worse. My feet were very cold. They were keeping track of the pulses in my feet and legs. After removal of my feet they were amazed at the improvement I was making. They told my family I probably didn’t have any brain activity. I would not wake up. The doctors just shook their heads. My wife said she would talk to me and ask me to answer by squeezing her hand or blinking my eye and I would respond. “ So we needed a brain scan“ !!!!!!!!. “SURPRISE” everything was O.K. After all the adversity and pain from surgeries, and new legs, going to rehab to learn to walk again, which took 7 weeks, dismissed from the hospital on July 15th. And now the big step to go to the beautiful motor home on the university parking lot, driven down for our use from our friends in Glendale Arizona.” “Could we handle the Big artifical heart machine“”? “Could we handle doing the dressings twice a day, with out causing some infection“? “What if the electricity goes off“? “What if the heart machine quits pumping“? I could not be left alone at any time. Some body had to be with me 24--7” How could we survive“? We were hooked up directly to the Salt Lake City Fire Department so they could get to us quickly, and get me right in to the emergency room at the University of Utah Hospital. “So many questions, so many unknowns“. We walked in the parking lots, but the uneven cement and asphalt caused me to pitch forward and almost fall, so we would go inside the hospital and walk where it was cool and the floors were even. I needed to become comfortable on my new legs. When you get a new heart, they want you up walking as quickly after surgery as you can. They didn’t know what was going to happen with me, because they had never had a person lose their legs and then get an artificial heart nor be a heart transplant. I was placed on Heart Transplant List on Monday July 21st. We were given a pager from the hospital, saying this is your key to a new heart Keep it on all the time. It could take months or years until we find a compatible heart, but your artificial heart will keep you alive. I told the Doctors and transplant team if a heart came that would be GODS will and it would be perfect but if not the LVAD and I would be home for Christmas. The Heart Transplant Team and Surgeon turned down 2 hearts, 1 on Tuesday, and 1 on Thursday. Dr. Stringham told me that I worked so heard that just any heart that came close to a match would not do, it had to be perfect. On Saturday July 26th at 11:00 A.M. I received the call that they had a heart for me, and how soon could we get to the hospital, and I told them at the time we were walking in the hospital for my exercise, and they jokingly, wanted to know if I came to the hospital every day just to wait for a heart. The heart transplant was finished at 1:00 P.M. Sunday July 27th. After 57 pts. of blood I finally stopped bleeding. This was the 2nd of my open heat surgeries. This open heart surgery was 26 hours. A normal heart transplant can take 4 to 6 hours. After 1 week of problems keeping pills down, (“ I was taking 58 pills a day“), started rehab again, learning to walk again, pain in chest from 2nd open heart surgery, pain in legs from not having legs on for 2 wks., swelling and shrinking of stumps so legs don’t fit. Dismissed from the hospital August 22nd, 2003 and spent from then till December 21st 2003 in Salt Lake City at my sons doing rehab and biopsy’s as an out patient, riding the para tram buss 3 or 4 days a week to the hospital. Finally released from out patient at the hospital and it was so great to be home for Christmas to be with family, friends, and church, most of whom I had not seen in 8 months. When I first saw my Cardiologist, Dr. Wicks, who was the last to see me off on the airplane, he said he never expected to see me alive let alone walking into his office.
One of my transplant coordinators (LeAnn Stamos) said “A heart transplant can give you five, ten, fifteen or more years for what ever makes your life WONDERFUL, BUT POST-TRANSPLANT IS NOT AN EASY LIFE.”
I have had:
13 biopsy’s of the heart in 2003 with 2 rejections, with a 3 day stay in hospital, per rejection
6 biopsy’s of the heart in 2004 with 1 rejection, with 3 days in the hospital.
Kidneys shut down to less than 20% working in 2004 and at that time we stopped Cyclosporine and started Rapamune and kidneys improved to 80% working in 6 months.
6 biopsy’s of heart in 2005 “”with 2 holes put in Lungs””, with 3 day stay in the hospital per hole.
2 biopsy’s of the heart in 2006
1 “ “ “ “ “ 2007
1 “ “ “ “ “ 2008
In 2009 I did not have a biopsy of the heart. They did a modified Annual. I had a stress ECHO, EKG, reg. blood draw(4 vials), 24hr. Urine ,and saw my many Dr.s.
In May 2010 I had hernia surgery. This was a result of having the ELVAD. This hospital stay was 16 days, it was supposed to be 3 to 5 days, but the bowels went to sleep and did not want to wake up.
In Aug. 2010 I had a modified annual with a medicine enduced stress ECHO.
In October 2010 I had my gallbladder removed laposcopicly
In July 2011 I had another hernia surgery and 6 days after we had another surgery to straighten out the bowel which decided to stop working. After 3 weeks in the hospital in Salt Lake I finally got home. The recovery from these two surgeries has been a very slow process.
In Oct. 2011 I had another biopsy heart cath. This heart cath. was #30.
In August 2012 I will have a modified annual with medicine induced stress ECHO.
A heart biopsy is a kind of torture that no one person should have to endure--not even once. It entails the removal of heart tissue from a patient who, most often, is not offered any sedation. A bit of local anesthetic is the most a heart biopsy patient can hope for--This painkiller’s efficacy is sorely limited. The ordeal of the heart biopsies never lessen over time. There is the physical pain involved of course, and the healing time seems to be longer with each biopsy. GOD is always with me and his will WILL be done.!!!!
4 to 6 blood draws every year to control my medicines (which are done every 3 months or as needed when changing the dosage)
I take 28 pills every day at a cost of $60.88 per day or $22,222.64 per. year. Part of this cost is pickup by insurance, and part is paid by the drug company’s. The balance is out of pocket. I have gone into the donut hole, by March 1st. For the last 5 years.
After the annual biopsy, and check up at the University of Utah Hospital, the 27th and 28th of July, 2007, they found a spot on my right lung. I have had 4 C.T. Scans since then, and of course they are looking for cancer, but the spot seams to be disappearing. This is one of the problems a heart transplant has while taking the anti-rejection drugs. You take drugs to counter act drugs you take.
There are app. 2,000 heart transplants performed every year in the U.S.
88% of heart transplants survive 1 year
78% “ “ “ “ 3 years
72% “ “ “ “ 5 years
60% “ “ “ “ 10 years
16% “ “ “ “ 20 years
About 90% of Heart Transplants can come close to resuming normal daily activities, but fewer than 40% return to work.
Heart Transplants can cost approximately $300,000 initialy , and approximately $40,000 per year after that. We have spent 1 and 3/4 million dollars including insurance.
I like to tell the story of a lost and found item in the paper.
“LOST DOG!!!!”, three legs, blind in left eye, missing right ear, broken tail, recently hit by truck; answers to the name of “LUCKY”. This is how I feel today and every day, just like the dog named Lucky. I don’t know why GOD choose me as a miracle and I don’t know for sure what he saved me to do. I live each day one day at a time and I Thank God I am Alive. My family got to see the heart come in, in the cooler, a true miracle to receive a heart after only being on the transplant list for 5 days. Everyone cheered us on wherever we were in the hospital. The doctors would say, they don’t get many chances to bring someone back from death, and we’re going to make sure he’s well taken care of. From the beginning of my story to the end, Attitude is what made me a winner. Attitude can make us all winners!!!! My prayer when I finally came too was “Lord use me I’m yours, (I am going to live and I’m going to fight)”. My wife Gwen says I asked would I die if they didn’t remove my legs, she said yes and I said what took you so long.I will have to live without my legs and feet, live with casting and recasting, (so my prosthetics will fit),live with super amounts of medicine and anti-rejection drugs, blood tests, doctor appointments, biopsies, doctor bills, and be careful of my health for the rest of my life. My wife “Gwen” recalls, They told us at University of Utah Hospital, that Allen’s determination to live was a big part of why he made it. His positive attitude still goes on today! I wonder many times how he continues being so positive when things go wrong, or his stumps hurt, or a spot on the lung, or the painful biopsy’s year after year.
It is truly great to be alive , even though I missed my youngest son’s wedding, I get to see my 14 grand children, and am involved in their lives and the lives of my 5 children and their spouses. I am very involved in my church by being on the church council and three committees, a member of the board of directors of Shepherd of The Valley Care Center for 13 years before it was sold, a member of the Board of Directors of Thrivent financial for Lutherans, member of Mended Hearts support group, the Wyoming Amputee Support Group and also volunteer at the hospital visiting heart patients. I look at life very differently today. I have really good days and really bad days, but all my days are UTERLY FANTASTIC !!!!and they are all good days. I look at the handicapped very differently, I am one of them. I don‘t consider myself as handicapped I just don‘t do things as fast as I used too. My positive attitude got me where I am today and will get me through tomorrow, even if I don’t feel well it’s still a fantastic day. It’s truly GREAT to be alive!! To be given that 2nd. chance that few are given. Great strides are being made in the medical community today, in August 2010 I held in my fist the newest LVAD. This is a heart pump which could last 15 to 20 years, the LVAD that I had could maybe last 3 to 4 years and was a definite bridge to transplant, the new one could be a life extender besides being a bridge to transplant.
On May 20th 2005 we got to meet the parents of Robbie,( the 24 year old young man whose heart I received, his organs helped save 7 lives and with tissue and everything else helped improve the lives of 50 others.). This does not happen to very many organ recipients, and I feel very privilege to have had that opportunity. It was a very tearful but wonderful 3 hours learning about Robbie, his parents, and brother. We still communicate by card and letters. We have a picture of Robbie and his family in our Family Room. He is a big part of Our life.
On January 18th. 2010 a good friend passed away, she was a donor, she saved FOUR lives and helped improve the lives of at least 12 more. Every person in this room could do the same.
My hope and prayer is that I am able to donate this HEART to someone to prolong their life, of course I wish to donate all organs and what ever will help improve someone’s life.
SOME INFORMATION ABOUT ____________
ORGAN DONATION
People of all ages and medical histories should consider themselves potential donors.
Medical condition at time of death will determine what can be donated.
Donated organs include the heart, pancreas, kidneys, liver, lungs, and intestines.
Donated tissue to replace bone, tendons, and ligaments.
Donated corneas, skin, bone, bone marrow, heart valves to help heal & replace what is damaged.
All major religions support organ and tissue donations.
It is illegal to buy or sell organs or tissue in the United States.
It is possible to donate life to others as a living kidney or partial liver, lung, pancreas or intestine donor.
Each year more than 6,000 deceased donors make possible nearly 20,000 organ transplants, and nearly 7,000 transplants from living donors.
There are also 25,000 tissue donors and 44,000 cornea donors annually providing more than 1,000,000 tissue and cornea transplants.
The need for donated organs and tissue continue to grow. Over 100,000 men, women, and children currently await life-saving organ transplants. Sadly 18 people die each day due to the lack of available organs, and every 12 minutes another name is added to the national organ transplant waiting list.
Every organ and tissue donor can save and enhance the lives of up to 50 people.
In 2006, there were a total of 115 individuals who donated organs and 767 individuals who donated tissues in Colorado and Wyoming. Atotal of 343 lives were saved through organs transplanted from local donors. Additionally, 1,350 individuals also donated eye tissue. Each organ can save up to eight lives and a single tissue donor can provide more than 100 tissues for transplant.
Organ and tissue donation becomes an option ONLY after all LIFE-SAVING efforts have been made, and death has been declared.
Consent for donation is confirmed and your family is asked to participate by providing your medical history.
The body is always treated with great care and respect.
Donation should not delay or change funeral arrangements, and an open casket funeral is possible.
Organs are distributed based upon medical information like blood type, body size, and tissue type matching through a national computer network operated by the United Network for Organ Sharing, they also consider organ size, time waiting for transplant, distance between donor and recipient, medical urgency of recipient, immune-system match, and whether the recipient is a child or an adult, once the transplant team has been notified they have one hour to make the decision. A heart can only be disconnected from a persons circulation for about four hours and still work properly. When you are critically ill like I was you go to number 1 status for the first 30 days. Tissue is distributed based upon patient need, availability and medical criteria.
The web site for organ and tissue donation is:
http://www.donatelife.net
There you can learn more about organ and tissue donation.
SOME MYTHS ABOUT ORGAN DONATION
MYTH: If I agree to donate my organs, my doctor or the emergency room staff won’t work as heard to save my life. They will remove my organs as soon as possible to save someone else.
REALITY: When you go to the hospital for treatment, doctors focus on saving your life----not somebody else’s. The doctor in charge of your care has nothing to do with transplantation.
MYTH: Maybe I won’t be dead when they sign my death certificate. It will be to late for me if they have already taken my organs. I might have other wise have recovered.
REALITY: Although this is a popular topic in the tabloids, in reality, people do not start to wiggle a toe after they have been declared dead. In fact, people who have agreed to organ donation are given more tests to determine that they are truly dead then those who haven’t agreed to organ donation.
MYTH: My family will be charged for donating a loved ones organs.
REALITY: The organ donors family is never charged for donating
MYTH: My loved one has suffered so much because of illness. I do not want them to suffer any more.
REALITY: Your loved one is dead at the time of donation and can not feel pain, and your loved ones body is treated with the same respect as someone who is alive.
MYTH: I am to old to donate.
REALITY: There is no definite cut off age for donating organs. Organs have been successfully transplanted from donors in their 70s and 80s.
MYTH: I am not in the greatest of health, and my eyesight is poor. Nobody would want my organs or tissues.
REALITY: Very few medical conditions automatically disqualify you from donating organs. The decision to use an organ is based on strict medical criteria. It may turn out that certain organs are not suitable for transplantation, but other organs and tissues may be fine. Don’t disqualify yourself prematurely. Only medical professionals at the time of your death can determine whether your organs are suitable for transplantation.
Contrary to popular belief, signing a donor card and your drivers license does not guarantee that your organs will be donated. The best way to ensure that your wishes are carried out is to inform your family of your desire to donate. Doing this in writing ensures that your wishes will be considered. When family knows it is easier for them to give their consent.
If you signed your drivers license as a donor please tell your family members of your wishes!!!!!!!
I don’t know how I got this way
It matters little here today
A healthy organ they must find
They’ll look where organ donors signed
There’s some that say the price is high
But you can’t use them when you die
The only thing that’s left to give
Are organs helping people live
I pray that those who don’t believe
In giving organs will receive
Some guidance from above
To help with our undying love
If you find it in your heart to give
Several dying people now may live
Your gift can save so many lives
Children, fathers, mothers, wives
It only takes a little time
To sign upon the dotted line
To tell your family of your plans
And leave the rest up to GODS hands.
By- Dale Francis Leeb
3-24-97
My Prayer for everyone is that we all say yes to the donor card, and drivers license, and make sure that we tell our family and friends our wishes to be a donor, and offer our prayers of thanksgiving to GOD, and the family that shared.
I’d like to close with a poem written by a 29 year survivor of a heart transplant who is 50 years old.
It doesn’t really matter when we die,
How we die, or why we die.
What really does matter is how we live…
And the hearts and souls of those we touch along the way.
!!!!!!THANK YOU!!!!!! 4/29/2011
!!!!!!THANK YOU!!!!!!
I thank YOU, Allen, for letting me publish your notes. I'm glad you are my friend.
Over the next few weeks I will be doing more posts about the sweet people who volunteered to be interviewed. If you missed out and would agree to have a post about yourself, check back to
my post with the interview questions. Thanks!
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