Everything happens for a reason they say, and I am not sure who they are, but that’s what they say. I hear people say that nothing is coincidence or everything happens for a reason. Everything does happen for a reason, doesn’t it? Life is made up of so many coincidences that sometimes we simply take them for granted.
My goal was to stay alive long enough to go and enjoy my son’s wedding in August of 2008. I think that goal is pretty common. We set goals for ourselves, a wedding, a birthday, a graduation, a holiday, a family get-together—some event we are going to live long enough to enjoy. What keeps us going?
It’s not like we’re all given the choice of what we want to live to see, but I do think willpower plays a huge part. I do not think it’s a coincidence that like me, so many people live long enough to see that wedding or graduation. I also do not think it’s a coincidence that once those deadlines have been reached, people often pass away or their disease gets worse. My oxygen levels decreased dramatically after the wedding.
Even at the wedding my dance with my husband was him standing in front of me, while I slightly swayed to the music and then had to immediately sit down, exhausted, short of breath. Merely standing up had become an aerobic exercise.
I agree that the will to live, the will to believe, to enjoy, to see or reach milestones is powerful but it could be easy to slide down the slippery slope of “If she just had more willpower, she could have lived longer.” This is just as absurd as believing that if you fight hard enough you can beat the LAM down, or not have it show up for dinner in the first place.
I guess what keeps us alive is different for everyone. How about my new lungs letting me live long enough to see the cure for LAM? It reminds me of the old joke about the dying woman who made a deal with God, that she will live to see her daughter married. She does, and then God comes for her, and she tells God, “But God, I have four more daughters.”
I remember you, Karyn, from the teenage youth camp in March 1965, when you were with my friend, Eric. I love that I can bring up that picture in my head anytime I want. I remember you at that dance in December of 1965. Your every movement flirted with me, or did it? You spoke to my friends and me after the dance at the top of the stairs as you were leaving. How is it that my friends and I were just standing outside after the dance? After a dance, we just left. You asked us if we knew Eric, and when we said yes, we asked you how you knew Eric, and you smiled, “Come to my dance next week and I will tell you.” Her words were like a joy-filled helium balloon, lifting me up. God, I was captivated. Was there a magnet inside her drawing me into her orbit? The butterflies, the heart flutters. I knew I had seen forever in a second, in a split second, in the split of a split. The spell has never been broken.
It’s no coincidence. I remember leaving the dance and looking out the backseat passenger window up to the sky, counting and pointing, 1, 2, 3, 4, 5, not realizing I was speaking out loud. My buddy sitting next to me, asked me what I was mumbling. I was too shy to reply. I was counting my lucky stars
The idea that our paths might just as easily not have crossed leaves me breathless, like a near-miss accident on the highway and I can’t help marveling at the sheer randomness of it all. I feel a quick rush of thankfulness, part adrenaline, part hope, and all God.
Through the years, I was deathly afraid of doctors and hospitals. One of my friends was in the hospital; as I visited him, I hyperventilated and my blood pressure skyrocketed into the 200’s. White coat fever would cause my thermometer to boil over. Karyn would travel every six months to the National Institutes of Health as part of their LAM protocol. I would ask on her return, “What did the doctors say? She would say, “Look at this picture of a dog who came to visit me.” “What did the doctors say?” “Look at this picture of another dog, who came to visit me.” “Isn’t she cute?” Somewhere in the recesses of my brain, the talk of dogs providing pet therapy stuck. Then, due to her LAM and avoiding getting her sick, and catching a cold, she had me attend the local senior fair to get a flu shot. On the way out past the exhibits, there was a woman at the end of the table with her dog. I stopped and chatted and asked her what they did. She and her dog visited patients at Exempla Good Samaritan Hospital. She told me about pet therapy and I started on the journey that led my two dogs and me into many hundreds of hours visiting patients at the hospital, and my white coat fever disappeared, the thermometer sang 98.6, and I could be at my wife’s side for her double lung transplant. Coincidence?
As my wife was awaiting transplant, I signed up for the orientation class at our local transplant agency, The Donor Alliance. I wanted very much to speak out and spread the gospel of donating one’s organs. Karyn was not coming to the class, as the walk from the car was a marathon distance for her, and she was fighting still another cold. On the morning of the class, Karyn let me know that she thought she should come to the class, as the reason I was going was for her.
After the moderator spoke for a while, we went around the class introducing ourselves and why we were here. The third member of the class introduced himself as Gavin, who had had a double lung transplant at DUKE. Karyn had been told by one of the nurses at University Hospital to talk to Gavin, as he had been rejected by University Hospital and chose to go to Duke. Karyn had been active on the University list for 30 months and there was not one call. Months and months and months had passed and Karyn had not spoken to Gavin. When it was Karyn’s turn to talk, she ended her talk with, “Gavin, I need to talk to you afterwards about Duke.” I discovered after this class that as I did not donate or received organs, I could not be a speaker, but rather someone who would set up booths or hand out brochures—not my cup of tea. Had I known, I would not have attended, and Karyn would not have met Gavin and set the final journey of transplant to Duke. Coincidence?
I believe there are no coincidences, only the illusion of coincidences. Sometimes, we are like race horses, fitted with our own blinders. Our blinders are invisible and most of the time we do not even know they are there. We forget to see outside the blinders, outside the lines. We simply do not notice. Sometimes we even do not see what is right in front of our face. I think there are signs of God’s hand all around if we just know where to look.
If you see these items as more than random luck or quinky dinks or just plain luck, as I do, then open the door a crack to new possibilities. It makes you more humble, less discontented and so very full of gratitude. The random is so random, it cannot be mere randomness. You know, sometimes God opens his palm and hands us a gift, a Godly green light.
I wonder, was it purely coincidence I was given the lungs I received or did God lay out his plan between you, my donor and me even before my lifetime?
It could be said that all of life is random or just plain luck, and everything somehow does connect, but this does not explain these and other stories, which seem so artfully scripted as if one can imagine a master story teller. Who else but God?
After all, I know nothing is coincidental
It is no coincidence that I am writing my story, our story, donor. Coincidences are merely God’s way of remaining anonymous.
Coincidentally, one thing does not lead to another, it leads to everything.
I was right where I was supposed to be at just the right time. I was right where I was supposed to be at just the right time.
Wednesday June 24, 2009
The Other Side
10 days of rehab completed. Clinic today, so no rehab. The clock stays at 10 days. All clinic tests went well.
The PFT’s were somewhat lower, but this is normal. The watchword we hear all the time, “It’s not unusual.”
Karyn is doing so well, that the pulmonologist suggested no clinic next week, but Karyn requested labs next week, but no doctor consult, so there will be no down time from rehab (other than one day stomach acid reflux test).
Thursday June 25, 2009
The Other Side
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The oxygen tanks were picked up; the umbilical cord has been cut. The trach supplies, the ventilator, the tubing, the concentrator. The oxygen was a blessing in Karyn’s past, and that is what it is now, her past.
Friday, June 26, 2009
The Fire Within Karyn
Both Sides
Dear Donor,
I am sitting in the front room of our Residence Inn home, which serves as family room, den and eating area, staring at the fireplace, wishing it was cold enough for a fire, just daydreaming.
When logs are first set ablaze, a small gradual fire ensues; Karyn and I freshly dating in 1965, a fire moving like an infant crawling, both of us learning to walk on our own. The flame grows ever-larger, and burns more briskly. Karyn growing past her teenage years, experiencing life, gaining knowledge, and growing into womanhood. We are oh-so-young and pulse to pulse. You can feel the heat like two boy-scout sticks rubbed together. There’s a reason kissing in my parent’s day was called sparking.
The fire peaks, and the logs emerge into roaring flames. The fieriness of romance and early marriage, raising our children, starting a career, the pace of life ever-so-fast. Keeping life on track consumes all of our time. There never seemed enough hours in the day. Always another bill to pay, another appointment, another schlepping of kids to a school or sports event. Like the fire roaring, life is warm and it is satisfying. But somehow I got bogged down in the details and I forgot we are living it.
And then, before I realize it, the logs begin a slower, more gradual burn, our children grown and out on their own, and life slows to a gradual, more peaceful pace. We are older and I wonder how we have walked this enormous distance in so short a period of time. Somehow I got bogged down in the details, and I forgot we are living it.
Then 10 years ago, Karyn’s fire was engulfed by LAM, she burning out and turning cold, her face like dying embers, turning ashen gray. Somehow, I got bogged down in the details, and forgot we were living it.
God, in his tender mercy, miracle of miracles, placed another log on the fire. The fireplace simmers the red-hot coals awake, and we only need to stir the coals for that extra flame, and another cord of happiness, excitement and life. I spread my hands over the rekindled fire to warm my hands, my heart and my soul, from the fire that stirs anew within Karyn. Your lungs, Donor, are the bellows and oxygen, and air once again fan, the flames of her fire, and mine.
If you have the fire, nothing, nothing, nothing, can douse the flame. Once again, my whole being is aflame with joy.
Life rises anew in the wisps of smoke.
Donor can you feel the warmth on my hands? Karyn has reached the 12th day of rehab. More days of rehab completed than waiting.
This Monday, Karyn has an esophageal manometry test. The esophageal motility test identifies problems with movement and pressure in the esophagus. The esophagus is the food pipe leading from the mouth to the stomach. Manometry measures the strength and muscle coordination of your esophagus when you swallow. A small catheter tube is passed through the nose, along the back of the throat, down the esophagus, and into the stomach.
Lung transplant patients have a high incidence of gastric reflux disease, (GERD), which puts them at risk for aspiration events in which reflux travels into your lungs, sounding the immune system’s alarms. Reflux may contribute to the rejection of your lungs, by injuring them when it’s inhaled. Hopefully, Karyn will do well and not need the dreaded stomach wrap. ’Cause she promised the doctors she would not do the wrap.
The stomach is wrapped where it meets the esophagus, so you can no longer throw up and aspirate into your lungs. Karyn’s stomach is as small as her heart is big, and too many people have had difficulties with the wrap, so I will pray that the test results show no need for the wrap. One of my friends said he will pray as well. His prayers are always the same. In the morning, his prayer is “Whatever” and his evening prayer, “Oh Well.”
I know Karyn is fragile and a softy. She is tough and kick-ass. We can deal with the wrap.
The stomach tests. Whatever. Oh well.
Somehow I don’t get bogged down in the details, never, ever forgetting we are alive, thanks to your gift, and living it. Fire breathers we all are.
Talk to you soon,
Richard
Monday June 29, 2009
The Other Side
Dear Donor,
Wishing my wife good prayers and good luck from the pit of my stomach.
The next test is the swallowing test. Foods of different consistencies are stained with a green dye so the technician can watch the food pass from the mouth into the esophagus, to see where it may be held up and to make sure it does not enter the larynx.
Normal swallowing achieves two goals: transporting food from the mouth to the stomach and protecting the airway. During the oral phase, food is chewed, mixed with saliva, and pushed to the back of the mouth. This part of swallowing is voluntary. Once the food enters the pharynx, swallowing becomes involuntary, stimulated by reflexes. Normal swallowing at this point propels the food downward towards the esophagus, and prevents food from going up behind the nose or into the lungs. If food enters the airway and goes into the lungs, this is called “aspiration” and may result in pneumonia or other serious illness and rejection. Once the food is in the esophagus, it is propelled downwards to the stomach.
We are 12 hours into the tests and if the future is like the past, Karyn will knock ’em dead again. As the warm and friendly clinician stated, most transplant patients would pay top dollar for Karyn’s test numbers. The swallow test was great and so far the reflux test is just an irritating little tube down the throat.
Karyn’s days are winding down here in North Carolina, and she is winding up.
The weekend was restful, and at one time, I noticed a color I had not seen in many years. It was pink, not in what Karyn was wearing, but in her cheeks. It was the most beautiful shade of pink, so becoming and radiated the essence of health. So when you see the color pink, think of Karyn and remember how hard she has worked to wear this color.
Nine days of rehab left, her numbers are good, and looking forward to getting this show on the road.
In the pink,
Richard
Airhead, Things
Better Left Unsaid
The Other Side
Tuesday June 30, 2009
Thinking back to this afternoon at the DUKE Center for Living, one man poked jabs at several older men; that he should be transplanted before them, that it does not make a difference what stage their disease was, that they had lived their lives and it was now the younger man’s turn. Another man emphatically jumped in “That LAM is not a known, and that all persons with pulmonary fibrosis should always go first.” “LAM is a nothing.” LAM to the back-of-the-bus.
LAM is nothing. Nothing. I thought about what this word meant, what it really meant to be nothing. To be of no import. No value. It was one of those moments when I felt I had never heard the word before, and I could not believe it means what it means. I thought how did this word come to mean that? Nothing. A common word you could use for anything. “Nothing’s wrong.” The way he used it, it sounded final, like a verdict. “LAM is a nothing”, he repeated. Better not check my BP after that conversation.
I, the mouth, once felt not-so-long-ago, that those with chronic obstructive pulmonary disease (COPD), who had smoked up their lungs should go to the back of the bus, or even off the bus. Their disease was self-inflicted nothing. Words that I want to vacuum back, flew out of my mouth. COPD is nothing. I could not think of any meaning of the word idiot that did not apply to me.
I have heard in other conversations that LAM (or fill in the disease) is a gift. LAM is not a gift, and yes Karyn has changed for the better because of it, but that does not make it a gift. If it does, I am sure she would like to return it. Anyone else want to queue up in
this line?
Whatever disease anyone has at The Center for Living, it wreaks havoc on those who have it and the lives of all those people who care about them. If only I had cystic fibrosis instead of LAM. If only I had pulmonary fibrosis instead of LAM. One disease over another is not something to be sought; it is never the lesser of evils. Any long-term and debilitating disease sucks. No lung disease is nothing.
It does not matter how grave things are for you, there is always someone worse, but it does not matter because your pain and suffering is your own, and that is enough. Those of us who opened our mouth and felt age should trump lung scores. Those of us who felt one disease is worse than another, and me, the one who felt that those-who-smoked-up-their lungs should get off the bus. I know we have all opened our mouths and said something we were sorry for later. I know what it is like to make an off-handed remark only to later realize the insensitive impact my words can bestow upon others. God do I know this. Words have meanings and they have consequences.
We all suffer, we all experience things differently and trading one horrible disease for another does not solve any problems. Each disease knows no mercy. All of us in the disease world, I know now; are all connected—you can no more separate one life from another than you can separate a breeze from the wind.
My mom wisely said to me, and I am sure more than I can count, “It is better to be silent and have people think you are stupid, then open your mouth and eliminate all doubt.” I tell myself it was fear ignorance that my wife would not be transplanted at University of Colorado Hospital that brought me to this COPD position. I am sure it was fear at DUKE for the younger man and husband to speak of age and disease “superiority.” What were they or I thinking? Or were we even thinking? Sometimes the price of our words is more than we can afford.
You know, if being on oxygen was so much fun, dealers would be selling it on the black market. I know I’d much prefer a cold to a brain tumor or Alzheimer’s, but I guess it really does not matter, like any one of us dealing with a disease had a menu in front of us and decided on the LAM very rare, over the equally delectable Cystic Fibrosis, the scrumptious Pulmonary Fibrosis, or the very well-done COPD.
The Taste of Air Page 13