The Taste of Air
Page 15
Karyn will do her final 6 minute walk. How far will she walk? Yesterday she walked more laps than ever before for the 20 minute walk. Yesterday, she walked at rehab and around the Residence Inn, putting in almost 2 miles.
At rehab today I watch Karyn say farewell knowing that the special attachments and bonds will never be broken. Karyn will continue to feel that special bond though words may not be spoken. It’s not goodbye but farewell. We’ll see you again my friends. Your friendship means a lot to me, and it will never end.
Donor, thank you for bringing back my wife,
Richard
August 13, 2009
This Ain’t Baseball
Both Sides
Dear Donor,
(A League of Their Own, as spoken by Tom Hanks) “Are you Crying? Are you crying? Are you crying? There’s no crying! There’s no crying in baseball!” But I can tell you there’s crying in LAM, Lung Disease, Transplant, ICU.
I was not a crier for a very long time. With Karyn’s LAM illness, the ups-and-downs of the roller coaster world of pre—and post-transplant, I have become a crier and have turned on those emotional faucets, which were rusty from disuse. People become more emotional, it is said, when they take drugs. Maybe I just caught that drug of emotion.
I have found tears I never knew I had. When a lung patient stayed in the hospital for over two months, when another Lungie suffered a horrific life-threatening setback. When one of our rehab friends suffered on the brink, I cried. The overwhelming sadness was like the breaking of a dam, a tidal wave of tears. It’s like I tapped into a well, deep inside my heart where it is breaking. The harder I tried not to cry, the harder I cried. Wet cheeks kept my heart from drying up inside. Guys, life throws you a lot of curveballs, but this ain’t baseball.
When Karyn suffered her stroke, tears were exclamation points to what I felt. Tears showed me the rawness of my feelings, sometimes the sad, but also the frustration, delight, anger, love, and joy. Gigantic drums of tears stockpiled finally let loose, the tears ran silently down my face. I cried because my heart knew I had so much more to learn. Is it true the more you cry now, the less you cry later? Were there a certain amount of tears that needed to be cried out? Will the tears ever go away?
I cried when Karyn could barely breathe before transplant and was so very exhausted from literally doing nothing. When she did not know she had been transplanted, and could again breathe on room air, I suffered a pulsing wave of tears upon tears. My tears flowing freely like the rain. It amazed me how strong my heart could be, even when it was breaking.
I am no longer afraid of tears. I know now that each drop has so much compassion and love in it and so I let the tears flow easily and wear the tear stains proudly. Tears are my badge of despair and heartache and compassion. Tears, like grief, reveals myself to me.
I found that crying is a strange phenomenon, because it does not occur when and where I thought it would happen. When I heard from doctors about the stroke-like episode setback for Karyn, the strength that I used to keep a positive front fended off the tears. After visiting with Karyn in writhing pain, and unable to move her left side, I picked up dinner from a restaurant and glanced at a couple sharing a meal; the idea of eating normally was something that literally tore me apart, and caused me to burst into a puddle of tears. I felt the sting of those tears and a sensation of pain so deep that I could barely breathe.
When it’s going well, it’s everywhere: in the program on TV, the song on the radio, the settings at a dinner table. And when it’s all going badly, it’s in all the same places. In the end, it’s not the changes that break your heart; it’s that tug of familiarity.
God gave me tear ducts, and God wanted me to cry. I know that tears are God’s way of cleansing and washing away. Sometimes tears wash away a speck of dirt in my eye and sometimes they wash away a bit of something in my heart and mind. People talk about crying from happiness and it sounds stupid, crying from happiness. I never knew what it meant. It’s not really happiness that makes the tears, it’s everything at once, everything that’s good and sad and wonderful all at once, except the things that are wonderful mean so much more than the sad things. So much more.
A woman I had been sitting with for many days in ICU cried often. Her husband of so many years had taken ill very quickly and as he passed away, she cried. Her tears saturating the tissues, shoulders heaving with every wracking sob. I will never forget her words as she cried and cried on my shoulder, she told me that she had read it somewhere and as a crier, kept it close to her heart. “If I could have been any part of my husband, I would be his tear. Conceived in his heart, born in his eyes, alive on his cheek, and died on his lips.” Tears are indeed a blessing, as I cried and handed her a tissue. Tears are healing, and they are loving. “I’ll go get us another box of tissues.”
In the ICU waiting room, I thought how sad it must be when someone is ill or dying, and no one cries for them. There are no tears to mark the depth of love. How sad it was when a person told me “Don’t cry,” after Karyn had her episode. Who are they to say crying is bad?
Dear Donor,
Just a brief note before I go to bed. Karyn and I walked again this evening, the hardest walk-to-date, much of it uphill, and steep, a total of over 5 miles. Several stops along the way as her O2 level dipped into the 80’s. The oxygen level needs to be over 90. I can hear the cry from the old TV show E.R. yelling out “Pulse-Ox”!
As we walked, dusk was turning to nightfall. The sky was brilliant with colors. Golds and yellows and blues morphing into lavenders. I glanced away for a moment, and the lavender was on fire, now a flaming red. Then ever-so-quickly the red was gone and the clouds burned fiery orange. The colors so bright remind me of not-too-long-ago Karyn’s facial “colors” were but a stark metal green and gray. Now like the sky at sunset, her colors are a rosy palette, so bright and her glow a-flame.
Blood test this week showed very high levels of cyclosporine. The cyclosporine was at 472, and should be no more than the normal 350. Cyclosporine in too-high a dose can be toxic. This high level may explain Karyn’s cold hands and feet, her dizziness, light-headedness, and low blood pressure. Maybe even her oxygen drop into the 80’s. I am glad Karyn will return to DUKE next week for her regular tests and bronch.
As we turned towards home last night, lightning lit up the skies. I told Karyn it was God taking her picture with an old Eastman Kodak, and the flashbulbs going off. I am sure God will show you her photo.
I see the new beginnings and hurry home from the office. Karyn, to me, is just like getting a new puppy. Remember running home from school or work to be with your new pooch? Puppy love surely is great. Being married for almost 40 years, and in puppy love?
Arf.
In my thoughts,
Richard
August 20, 2009
A Negative is a Positive—On Borrowed Time, On the Clock
The Other Side
The bronchoscopy showed acute rejection, and Karyn is in the midst of fighting off A-1 mild rejection. Two out of three lung transplant patients will have acute rejection. Why couldn’t Karyn be the third?
Rejection is very common, as the immune system recognizes the donor lung tissue as foreign material that must be destroyed. Thinking it is doing its duty, the body sends its cellular troops to attack the infidel. To outflank this problem, doctors suppress the patient’s immune system with medicines that trick Karyn’s body into thinking the new lungs are hers. These same medicines can make Karyn susceptible to ordinary infections that otherwise she would be capable of battling.
It is a delicate tightrope act between suppressing the immune system so that the new lungs can graft within the new body and yet allow the immune system to function well enough to avoid being overwhelmed with routine bacteria or viruses. The operative word is delicate.
The immune response to the transplanted organ p
rotects the body from potentially harmful substances (antigens) such as microorganisms, toxins and cancer cells. No two people except identical twins have identical tissue antigens. Without immunosuppressant drugs, organ transplantation would almost always cause an immune response against the foreign tissue (rejection), which would result in the destruction of the transplant. The immunosuppressive drugs are used to keep this response in check, but often the body’s impulse to defend itself simply takes over.
Acute rejection is injury to the organ caused by the T-lymphocytes. These cells were seen during Karyn’s bronch and found with the biopsy of the lung. Biopsies of the lung are done at regular intervals to check for presence of rejection, and are done at one month, three months, six months, nine months and twelve months. The lungs then are biopsied every 12 months in absence of any problem.
Biopsies are done through a lighted tube, a bronchoscope, that is inserted through the nose or throat and into the lungs. The throat is sprayed with a numbing medication, and the bronchoscope is inserted. Most patients are put under. This procedure is uncomfortable, and your throat lets you know about this, as coughing spells are normal. The tissue is examined and if there is the presence of rejection and infection, Karyn is notified immediately.
Rejection usually but not always occurs in the first month or the first year after transplant. Karyn’s rejection, A1, which is minimal acute rejection, is the mildest rejection. Karyn had shown symptoms of A1 rejection—tightness in her chest and a recent persistent cough. She received home infusions of antibiotics and steroids administered by Apria Home Healthcare for three days. Her prednisone level was increased from 20mg per day to about 500mg through the butterfly IV in an hour. After the infusion period, she will take 60mg by pill and then taper off each day by 5mg, until back to 20mg. Steroids! Guess who will be tip-toeing around the house?
Dear Donor,
Just to let you know, a little bout of acute rejection but don’t worry. Nothing stops the-little-engine-that-could Karyn. For the last three days of IV steroid infusions I tell myself there is nothing to be gained by worrying between then and now, and yet I still worried. Karyn walked almost fifteen miles in those three days. Today, she babysat Avah and took the little one to a not-so-nearby park to swing and play. One thing I don’t worry about is that my wife does not have acute rejection to being positive. If there was a blood test for optimists, she would test positive. And the pessimists and their blood test would show up as “B negative.” Sorry for that bad joke.
When I cough, I do not worry. Karyn asks me “Am I all right?” and I answer yes. I do not worry. When Karyn coughs, once, twice, three times, and I ask, “Are you okay?” and Karyn says, “I am fine.” I worry. Every ache and pain of hers makes me wonder if the LAM is coming back, or if your lungs are being called back to you. LAM can come back but in all likelihood, rejection will take her life, not the LAM. Rejection affects the entire body. As you know a transplant is the last resort of last resorts.
Life death life death life death. The rhythm of life going back and forth like a metronome. Karyn’s transplant day of pills and shots starts at 7:00 AM and ends at 10:00 PM. If you are tired, too bad—you need to get up, and be up. For the rest of her life, Karyn’s transplant day schedule must be met. There are no days off. There is no retirement. You cut out the LAM with your lungs, but LAM is a weed that can grow back.
As a husband, I call tell you honestly there are times, sometimes even long stretches where I forget my wife has LAM and your lungs, and just see Karyn as my wife, as a woman. Of course, those long stretches—and by long, I mean hours or days, at the most—do end and I am left marveling at her, and how she is not supposed to be around right now either, and then I look forward to forgetting again.
You know this, but many people do not, that with a transplant you are trading one chronic disease for another chronic disease. The LAM is not gone. The LAM can come back. The battle to keep your lungs from being attacked by aliens is always on. Karyn has not been cured. What all this is about is buying time. Transplant is trading one set of problems for a hopefully more manageable set.
The transplant survival rate at the end of 1 year is 85%, at 3 years 76% and at 5 years, 60%. Unfortunately 40 per cent of recipients die within five years of transplant. When you get a transplant, you set the clock. No offense, but at some point, the immune systems registers that the transplanted organ is foreign material. Is it because every time Karyn breathes in air, her lungs are at risk? No other organ transplant is exposed like your lungs.
Karyn avoids cigarette smoke, estrogen-containing medications, and working in the soil, with its germy spores. She sits in the back of rooms so that anyone coughing; coughs forward. She wears a mask on an airplane as air is re-circulated. Karyn either avoids buffets or has to be first in line. When she coughs or is tired or her color is not pink, I worry, is she all right?
I worry about the Dark Side, Bronchiolitis Obliterans Syndrome (BOS), chronic rejection. This is the nasty progressive deterioration of the function of your lungs. Unlike acute rejection, BOS does not respond to currently available medical treatment. BOS maybe related to repeated infections or rejection episodes. Sadly, BOS is common and the most common cause of transplant death. BOS can be treated, not cured, and many people live with it, for many years. Unfortunately, at the present, immunosuppressant drugs and the balancing act is more an art than a science, with too many transplanted succumbing to rejection or infection.
DUKE is studying BOS. I am hopeful that a cure will be found. Like everything, it takes money to study this awful disease. As my mom says, it should be as easy to make it as it is to spend it.
I hear no coughing from Karyn and I am going to go to sleep.
I will keep you posted,
Richard
Dear Donor,
I am three months out, as you know, and I am on heavy doses of steroids to get rid of some mild rejection of your lungs. Don’t take it personally; these things happen. My body is a war zone. I take one pill to fight rejection and my kidneys go haywire. I take pills to fight off rejection and my weakened body suffers acute rejection.
I am surviving LAM and your lung transplant. I guess that changes the noun to a verb. It is something I am doing, not what I am.
I am still sick after transplant, but it is a different kind of sick. There are challenges for me for the remainder of my life. Rejection is always around the corner. It is the mask of death peeking through the curtains. There will never fully be any time of rest. What I have done, as you know, is merely postpone the inevitable. I cling to the time I have been granted to learn the true meanings of life as I struggle with knowledge of my mortality, and I am glad your lungs are along for the ride.
Sometimes I feel like I am always looking over my shoulder and will never truly feel safe again. Never feel safe again; now that’s a scary thought. There is no doctor at DUKE or at home whose role is to make me safe. They are there to fix me when things go awry. Can I ever feel safe in any part of my life? Am I supposed to?
Anything can happen when you step out the front door, and I guess you know that (although you have not told me what happened to you). A tree hit by lightning crashing into me. That darn bus.
But that’s life. Dare to love and you risk rejection and a broken heart. Dare to speak out and you risk condemnation. Apply for that new job and you risk rejection. Our daily lives are full of risk and rejection. But without risk there is no more to be gained than lost.
Normal and safe is an illusion. Sometimes I think the illusion of safety, the illusion of unlimited time unfolding into the future, of “later,” and “someday” is something we humans maintain as we need it. But my life is an adventure, meant to be lived. Full of ups and downs, risks and rewards, triumphs and defeats. Never safety. Not true safety. Like normal, safety is an illusion. The illusion of unlimited time of Later and Someday is just that, an illusion.
Will I ever see myself the way I used to? I do not think so. Settling into the new normal takes a long time. It is like a series of earthquakes and aftershocks. Just when I am getting comfortable along comes another reminder. Do not get me wrong, I am always a glass full kind of person, so it’s not like I dwell on my LAM and your lung transplant all the time. But it is always there, lurking around like a bad dog, waiting to bite me when I least expect it—like vomiting and aspirating into your lungs and almost immediately getting pneumonia or walking in the neighborhood and picking up aspergillis from someone just mowing their lawn and getting acute rejection.
I can get LAM’s sinister sister; one can get LAM and it can come back. The lungs can be rejected. I am paroled but not free.
Is the bark worse than the bite? I drift back to the week of evaluations at DUKE in February before my transplant, and the gauntlet of tests: the blood draws, the pulmonary function tests, the echocardiogram, the heart catheterization, the chest CT scans, the gastric pH test, and the esophageal manometry test. Phew. I remember the six minute walk at the Center for Living and struggling to pass the 1000 feet barrier requirement.
I can hear the words of one of the thoracic surgeons, “You don’t want a transplant. No one does. If you think you have trouble breathing now, it will be much worse after we cut through your intercostal muscles. You’ll be in such pain and misery, many days you will regret you had this operation.”
“If you think you can walk in here and get new lungs, and you’ll be fine, you will not. You will be miserable. For the rest of your life, you must take strong drugs to prevent rejection of foreign tissue that will weaken your whole body and make you more susceptible to diseases you would never have gotten otherwise.” Like many kinds of cancer and diabetes. The drugs induce diabetes in about half of transplant patients (you can see me and I am raising my hand as one of them). “Quality of life? You think it will be better after transplant—it will be worse because you will be so miserable.”