Donor, before LAM and transplant, life just seemed to happen. Now life seems more . . . . more what? More acknowledged, more deliberate, more intense? Maybe just more. I feel more everything. Now I think of life as a terminal illness, so I love it with a joy and a passion as it ought to be lived. I remember that everything changed that day, the day I figured out there was exactly enough time for all the important things in life.
I am aware of life and how precious and beautiful it is. LAM and transplant made me aware just how short life is, and that every moment should be lived to its fullest and that nothing, nothing is more satisfying than love given and received. Life and love are now, this minute, today. Tomorrow will take care of itself.
Knowledge and wisdom did not come to me like a robe and a crown that I put on and suddenly had all the answers. There is no curtain to look behind for the answers. Rather, wisdom and knowledge have come from living through these raw experiences over time.
I have learned it is okay to be sad and feel those huge feelings. I have learned that when I am hurting, I do not have to do it alone. I can cry on the shoulder of my husband or a close friend. I have learned that life is fragile, and not to be taken for granted. I have learned to accomplish tasks I would rather not do at all. I have learned to be brave in the face of difficulties. I have learned to laugh at life, rather than life laughing at me. I have learned that not one day I spend on earth has been promised to me; this is simply the price I pay for that first breath I took in the beginning. I have heard the siren call of mortality and I understand what is now will never be again.
I learned not to worry about things I cannot control. I believe things take their own course, happen for a reason. I was not always that way. I used to think I could control everything. I am much happier for having stopped trying. I have no control over much of what happens to me in my life but I do have control over how to react to it. Looking for the answer to Why Me is futile. But there are answers to the What Now. Once I took responsibility for my reactions, I was free to live again. Making the best of my experience, the wake of dawn, and giving it meaning, that’s my choice. This was not an easy lesson.
Stay in the moment. I am not afraid to die. I just do not want to. I love life that you gave me, and living.
I would trade these “gains” for a longer life without LAM and transplant, but they are pretty good consolation prizes. I have learned so much and lived so much. You can be told about LAM, about lung disease, about lung transplant, but unless you live it, it won’t mean much. I was here and I lived through this. And this is what I learned. You just can’t put an old head on young shoulders. I guess what I am really talking about is some way to tell those who follow in my footsteps, “You are not alone.”
No matter what, I spend the time breathing and living and not counting the time until I am not. And maybe that’s one of the lessons here. In spite of the LAM, the lung transplant, the rejection drugs, in spite of what those of us have been through, we’re all just human.
The scars may be healed but my gift of life is on a clock that is ticking. You, my gift’s original owner, have already gone on ahead of me, and it is only time before I too will be reunited with you, my donor. I do not live in shadows of that fear. I choose to live my life looking forward to each day and to the future. The gratitude I feel to you is indescribable. A sigh of relief comes from deep within me, and one deep breath says it all.
Life is exhilarating and breath-taking and beautiful. Donor, I know that whatever happens I can get through this. I never let LAM, nor the anti-rejection drugs steal the goodness from my days. Maybe life is not fair; it’s just fairer than death, that’s all.
I am like everyone else, except that I’m not. I am enjoying the life you gave to me a breath at a time. Life is after all, a breath.
The things I bought for my children may last a few months or a few years, but what I have taught them and others through my adversity, what I showed all, will last their lifetimes. It is so true that you can’t take it with you, which is why there are no luggage racks on a hearse, and for me, I shall have no luggage.
You are not alone,
Karyn
May 17, 2010
A Life Lost, A Life Given Back
Both Sides
Dear Donor,
My life was becoming smaller and smaller. I was hibernating. No one wants to live through another person’s death, but it is part of the deal. Isn’t it sick hoping for someone to die? I live because you died. For me to live, someone’s family had to grieve so I may be happy. It is a rough equation but the only way I can live. A life lost, a life given back, and my heart overflows.
To know that when you died, your family cared enough to give a complete stranger the gift of life, the family who at the worst moment in their life, generously chose to save my world. I am so grateful and I cannot even begin to express how I feel with words. To know that my good fortune was borne out of the depths of such sadness is about as conflicted as I can feel.
Organ donation is truly a miracle. I felt like someone had been sitting on my chest for ten years and finally had decided to get off. To be restored surpasses any gift than can be given. I have been given a gift that is tangible and livable. A gift that I live minute by minute, hour by hour, day in and day out. These minutes, hours, days, would not be possible without your gift. God Bless You.
You are right here with me. I wish I could feel your lungs, touch your lungs, and could touch you. One thing is very certain; because of you, each day is sunnier than the previous day. Tomorrow has endless possibilities, and that is nothing short of a miracle.
I do what I can because I can, and to do anything less than the best I can do is to sacrifice the gift of life and my second chance. I do know that I live to honor you, the person who saved my life. I am the caretaker, and your lungs are like my child I must protect.
Know that I am forever connected to you. You are etched upon my heart forever. We are destined to share our souls, now and forever. I, who made it to the other side, live as a memorial to you. More than just lungs, you gave me life. You did not just give me back my life, you gave back all of the lives of all the people in my life.
I hope and pray that one day soon your family will respond to my letters and get in touch with me so I can thank them in person for giving me this beautiful new life, for the use of your loaner, to know in this very unique way, their child is still living in this world.
For me to see firsthand how precious life is and then get another day to live, to appreciate the gift of deep breaths, I shall never forget that I could not breathe at all. I live my life to the fullest and every moment is full of wonder. You gave me back myself.
I have been given a great gift, the knowledge of my own mortality.
The first breath I take when I wake up each morning reminds me to be thankful.
You renewed my life, and we have become each other’s air.
Everything. Wordless and spoken. Everything. Written and understood.
All of me,
Karyn
Dear Donor,
How do I say thank you to you, that my wife is alive today because of your gift of her life saving lungs? How do I really say thank you that my wife is alive? I want you to know that my wife, Karyn, cried when she was told the operation was a go, that she would receive your lungs. She cried because she knew that somewhere a family lost a precious beloved person in their life.
My heart goes out to you and to your family and my heart will always be there. I am overwhelmed with feelings, a most curious mix of joy and sorrow.
Our Bible says in Ruth, that “She who saves a single life saves the entire world.” When I think of all the people who love the woman you saved, who rely on Karyn, whose lives would be so fundamentally different without her, you not only saved someone’s life for sure, but even more important, you saved Karyn’s
world. You gave my wife her life back, and you gave to all the lives of all the people in her life.
I love you because you saved my wife’s life. Karyn was the one dying, but in a way, I felt my soul slipping away.
Now Karyn gets to grow older. She will see her grandchildren grow up. She will walk her dogs. She will breathe. She will dance again. She will climb mountains again. She will be.
Remember that no matter where I am or what I am doing, I have a special place inside me for you. It’s been there since the day we met and you breathed life into my wife and partner. Your place in my heart is tender, a bruise of longing, a pulse of unfinished business.
Just remembering May 17th pushes and pulls at me in a thousand, million ways. My memories circle and circle, random, out of order, and not always complete. There is always one that comes back again and again: Karyn reaching out to me, grasping my shoulders and arm, walking in the hallways at Duke, her fingers entwined in my fingers, which I take and do not let go.
Your lungs breathing life into my wife and me.
Know that forever I shall hold you in my heart, my soul, my tears and my every breath.
Maybe all I should say is that reliable old line that goes on almost every postcard, “Having a great time, wish you were here.”
May God bring peace to you and your family,
Richard
Sadly, our letters to the donor’s family go unanswered. I need closure to meet your family, to have your family touch Karyn’s chest and see her breathe through your lungs. We may never have met, but you always will be part of my wife and me. Grafting your lungs into my wife, taking something from one person, attaching it to another person, until they grow together. We have become each other’s air. I can taste it.
I do not know if this scene is true or not as all information about the donor is confidential, and God I am hopeful that in the near future we will meet your family and I will find out. I see this scene over and over again; an endless spool of film. I see your father standing sentinel by your hospital bed. His back is to me and I do not see you, his daughter, or his wife. I know your age is 15. The father takes a deep sigh, and crosses his arms. I see your father look down at his shoes, looks at the hospital bed. He steps back and crosses his arms, as if he is guarding himself against any more pain or maybe as though holding his loved one, one more time in his arms. His arms wrapped across his chest, hands hugging his shoulders. His voice not breaking, voice already broken. I can see his back contracting and expanding as he breathes deeply. His head is nodding, saying yes to what his heart cannot yet accept.
A vent tube is taped to your face, and a machine hisses softly, doing the job his daughter could no longer do on her own. A voice murmurs, “Tell her good-bye.” His face is blinded by tears. Your dying, the dying of his daughter, fills his world. You will always be 15. You will not learn to drive and he will not cover his eyes while you almost hit the car in front of you. He will not beam with pride as your date whisks you away in your specially-picked-out beautiful prom dress. He will not walk you down the aisle, and give you away. He will not caress your baby. You will always be 15.
It’s the last day, the last few hours, then moments, and then moment. He reaches out to touch you, one last time, while your body is still warm and before the ventilator, keeping you breathing and alive, is unplugged. His body is wracked by tears. He has trouble standing, his knees almost crumbling. The dying of his daughter fills his universe. The last time he will say good-bye. The last time he will hug you.
Blessedly, your memories with him are the presents you gave him, and he will open them again and again. Tears roll down his face and my face.
There is no age limit on who can donate deceased organs. There are no age limits for living donation and tissue donation; the deciding factor on whether a person can donate is the person’s physical condition, not age. Most major religions support donation and have provided statements for their membership.
Every effort is made to save the patient’s life before donation can be considered. Donor families are not charged for the medical costs associated with organ donation and tissue retrieval. Donation surgery includes careful reconstruction of the body and should not interfere with funeral plans, including open casket services.
More than 119,000 people are waiting right now for organs. Sadly, eighteen people each day die waiting for an organ. Every 11 minutes, a new person needing an organ is added to the list. Become a donor. Be the One for someone’s special Karyn.
In life starting out, we all want to be the one to make a difference; we all think we will make a difference, but the truth of the matter is very few of us will ever make that difference. But like our donor, the last thing you do in life can make that difference.
Be the Difference.
DonateLifeAmerica.Org.
Glossary Of Terms
Acute rejection—Early immune rejection to transplanted lungs where the immune system detects the new lungs as foreign and tries to mount an inflammatory response against them. Acute rejection occurs in approximately 60 per cent of patients in the first year after transplantation and is diagnosed by biopsy during bronchoscopy. Acute rejection is treated with steroids and other medications that suppress the immune system
Angiomyolipoma (AML)—a benign tumor (oma) consisting of blood vessels (angio), muscles (myo), and fat (lipo). AMLS occur in LAM and are most often found in the kidneys
Arterial Blood gas (ABG)—A measurement of the oxygen and carbon dioxide in the blood obtained by drawing a blood sample from an artery (usually the radial artery near one’s wrist or in the brachial artery in the crook of the arm) rather than a vein. The ABG measures the amount of oxygen that your blood is able to carry to your body tissues. The ABG measures acidity (pH) and the level of oxygen and carbon dioxide in the blood. The pH of blood is usually between 7.35 and 7.45. A pH of less than 7.0 is called acid and a pH greater than 7.0 is called basic (alkaline). Blood is slightly basic, and Bicarbonate (HC03) is a chemical buffer that keeps the pH of blood from becoming too acidic or too basic.
Bilateral lung transplant—Receiving two lungs during a transplant. Also called a double-lung transplant.
Biopsy—A small sample of tissue taken from an organ for diagnostic purposes
BIPAP, CPAP, DPAP—P.A.P. stands for positive airway pressure. These assist in the physical needs for breathing, but also help remove excess CO2 from the system. BiPAP stands for Bilevel Positive Airway pressure and the BiPAP provides 2 sets of pressure to assist in inspiration (breathing in) and exhalation (breathing out). The pressures keep the airway from collapsing on the lungs.
Bleb—A cyst full of fluid and/or air on or near the surface of the lungs.
Bronchiolitis obliterans syndrome (BOS)—Small airway scarring. There are no proven treatments for BOS, which causes a significant limiting factor to long term survival after lung transplantation. Five years after transplant 50% of lung transplant patients have died from BOS.
Bronchoscopy—A procedure where physicians look into the lungs and surrounding airways using a small camera, a thin flexible fiber optic tube. The tube is passed through the nose or mouth or trach down into the airways (bronchi) checking for infection and rejection.
Buspar—Treats certain anxiety disorders, or to relieve the symptoms of anxiety and/or depression
Cardiac Catherization—Procedure in a which a small tube is guided through a vein or artery into the right side or left side of the heart, to check function of heart and coronary arteries
Chest tubes—Sterile tubes inserted into the chest cavity between the lung and chest wall; used to re-inflate the lung, to release air, or to drain chyle or another fluid from the area.
Chronic Obstructive Pulmonary Disease—COPD—An obstructive lung disease most frequently caused by smoking. Although LAM is also an obstructive lung disease, most physicians do not refer
to it as COPD.
Chronic rejection—scar tissue in the small airways of the lungs. There is no effective treatment for this condition.
Citracal—A calcium supplement, which is used by persons, who are unable to get enough calcium in their regular diet or who have a need for additional calcium. Citracal is used to prevent or treat several conditions that may cause hypocalcemia (not enough calcium in the blood). The body requires calcium to make strong bones. Calcium is also needed for the heart, muscles, and nervous system to work properly.
Collapsed Lung—A condition where the space between the chest wall and lung is filled with air or fluid causing the lung to deflate partially or completely. Also called a pneumo or pneumothorax.
Cyclosporine—Immunosuppressant drug medication used to prevent transplant rejection, which works by decreasing the activity of the immune system, counteracting white blood cells rejecting the transplanted lungs
Diabetes—Body’s inability to control the amount of insulin or blood sugar it produces for energy
FEV1—The percent of the vital capacity that can be forcibly expelled in the first second of maximal expiration. The maximum amount of air you can forcibly exhale in the lungs, and used to determine the severity of obstruction and/or restriction in the airways. FEV1 is a marker for degree of obstruction, greater than 80% of predicted is normal. Less than 40% is considered severe obstruction.
Gastroesophageal reflux disease (GERD)—Stomach contents leak backwards from the stomach into the esophagus. Evaluated before and after transplant by impedance testing, with a 24 hour pH testing, esophageal manometry, barium swallow or stomach emptying studies.
Gastrostomy—Jejunostomy The GJ tube is a tube placed into the stomach and small intestine. The tube vents the stomach for air or drainage and alternate way to feed
Immunosuppression—Preventing the body’s immune system from rejecting an organ transplant
The Taste of Air Page 18