All this on top of getting up at 7:00 AM to start the medical regimen. (Karyn’s day does not end until I shovel her into bed at about 10:30, hooked up to her yummy GJ feed bag).
In Ninety-degree Durham weather no one says, “You’ll get used to it.”
This ain’t no dry heat. Instead, the woman cleaning the tables where I set up my lap-top, “I’ll tell you what hon, you just sit a spell and wait until it’s July, then y’all will taste some holacious hot.” I declare.
Where the sun is shining ever-so-bright,
Richard
Bags. No Baggage
The Other Side
June 9, 2009
Dear Donor,
Over the weekend, I threw out the bags upon bags upon bags of cannulas, tubing, and medicines no longer-to-be-taken. Going through them, I had a big piece of Karyn’s LAM treatment.
In those bags, lots of little ways to deal with, and fight against LAM. But what those bags did not hold, could not hold, was her courage. And her strength, and her faith, and her humor, to push back against the LAM. No bag was big enough, strong enough, for those things, it came from her heart.
As I was gathering the bags, Karyn was sitting in a chair, very frustrated, “I want to feel my new lungs, to share my breath with the person who gave me this gift, this gift of a lifetime.” Sitting there trying with her hands criss-crossed over her lungs, working so hard to feel your lungs. Each precious breath reaching to her new lungs shared with you, her gift-giver.
Karyn is a special soul who shows the rest of us how to embrace life and continue living.
Can I order a bag of Karyn? I betcha there would be a lot of takers.
Karyn shows me time and time again, that a person with LAM, with any disease, is so much more than their physical problems and treatments, so much more than their “Let’s stare at the person with the oxygen.” So much more than their bags of stuff.
I feel her air and her breath touches my heart.
Donor, thinking of you with each breath,
Richard
Wednesday, June 10th
Uh Oh, PFTs Down
The Other Side
Dear Donor,
After Karyn’s early morning regimen, she blows her PFTs around 10:00 AM. The Pulmonary Function Test is done through a spirometer which measures the amount you can blow in one second and the total volume. The FVC volume has been running from 1.36 to 1.55. The FEV1 started out after hospital between 1.25 and 1.34 but in the last few days, dropped to 1.07. A drop of over 10% can be a sign of rejection.
I called the post-transplant coordinator and headed to clinic. Karyn did her PFTs, an ABG, chest x-ray and blood draws. We met with the PA, the doctor, and the dietician. There is not a problem with the PFTs. Thank you Donor. The trach will leak and block the full force of your lungs.
Stitches were removed. About 100 staples! Each staple being taken out feels like a bee sting. Modifications to the protocol were completed, with reductions in the amount of tube feedings and as a result, Karyn’s soft foods have now grown immensely, now to include beans, fish, melted cheese, softer fruit, and fully-cooked vegetables. Moosh is the word.
After clinic Karyn and I went to the supermarket. Neither one of us could remember the last time Karyn shopped at a market. We walked around and around the store shopping and then back to the car, parked in a non-handicapped space. Another first in a very long time.
Tonight, I made vegetarian baked beans with melted cheese.
More good news received. The trach will be removed next week at clinic!
Guess who’s sleeping now and will have to awakened at 10 for pills, and at 11 for insulin and shot? And when the feed runs out, to be freed of the machine leash around midnight.
I could use a little oomph from your lungs,
Richard
Caregivers, I Am Her Lifeline
and She is Mine
On Both Sides
Dear Donor,
It was the best of times. It was the worst of times.
There were so many times that Karyn said, “I just want my life back,” but I knew in her wish she also meant, “We just want our lives back.” I remember those words said over and over again, “I just want my life back.”
Life is the sum total of every moment in whatever those moments unfold for us. The contradiction of LAM is that you perceive the imminent loss of time, but in truth, there is a lifetime to be lived in every minute of every life. Karyn and I chose to live those lifetimes one minute at a time.
Going through the first fifteen years and not knowing what the reason was for Karyn’s decline and the ten years of knowing it was LAM, and then the transplant, know this Karyn, “I’d rather be here than anywhere.” Also true, “I wish we could be somewhere else.”
But, really, what else would I do? Or where else would I be? I am shocked when I hear people say they are surprised and impressed that we are still together. I know that if the tables were turned she would absolutely be there for me. I am her lifeline and she is mine. I guess some just want the wedding and the honeymoon, but not the marriage. Even in this crazy world of ours, I know of no marriage with a pre-nuptial health clause. Marriage and life are not for the wedding vows of “better or worse”, but for “better or different.” All sales are final. I chose Karyn and Karyn chose me. “Til death do us apart.”
When you truly love someone you do not have to think about options, you just do it. Sure LAM and lung disease and the lung transplant were hard on both of us and me as a caregiver, but if you love someone not to give care is unthinkable.
Richard’s days are no longer his own—the LAM has stolen those days, changed them from the life he would want to lead to the life he has to lead, a life of caring for me. Karyn, it is not the life I have to lead; rather the life I want to lead.
As a patient Karyn struggled with weakness, fatigue, the loss of who she was—she had to be there, and I get it that we care-givers do not have to be there.
Yes, it was rough on me, but may be rougher on Richard. I pulled my strength from him and he pulled it from me. The family was our strength and I could not have done it without them. Don’t send me flowers or get well cards, send them to my husband. He works every day and takes care of me every day too. I truly believe that the caregiver who really loves you has the hardest job in the world. The hardest part of living with LAM was watching my husband watch over me. I am the patient and must deal with the pain and loss, but having to stand by and watch me suffer and knowing there is nothing he could do to stop the loss of my breath, of my pain, of me, is worse. I wish with all my might, that I had not gotten this, not usually for selfish reasons, but because it has changed his life . . . forever. The only people who are as scared as me are my significant others and of course, Richard, my care-giver. Let’s face it; LAM is an uncharted road—who knows where it will take me? But the one certainty is, I cannot get through it alone. Cannot. We need others and others need us. I need you Richard.
I sometimes felt that I did not do enough because I wanted to take the LAM away from Karyn and I could not. I wanted to help Karyn through this. But there is no through this.
I remember Karyn taking my hand, and saying. “I know that you are scared and I am sorry.” It broke my heart. As caregivers, we have the toughest seat in the house. I may not need to be cured, my body may not be ravaged by disease, but I must find a way to heal.
Each day as a caregiver I live with the same fear. Will Karyn make it through the day? And what about tomorrow?
Sometimes the best thing I can do for my husband, for the others, and for myself, is just to say something very simple. “It’s going to be all right.” No matter what happens, what is meant to be, I know that is the truth. It is what it is, but that’s all it is. Sure LAM was the focus of my life, sure lung transplant was the focus of my life, but it wasn�
��t all there was to life. That there was life before LAM, and there will be life after transplant.
As a caregiver I did what I had to, ignoring my own needs, and in essence giving up my priorities for Karyn. Our study of transplant centers was reduced to a few and UCLA would have been much easier for me, with family and friends in Southern California. I would be able to stay home and work. But DUKE in my opinion was the best choice for Karyn. DUKE favors a double lung transplant, the waiting time was short, the rehab center, the doctors and the surgeons are world class. As a caregiver I must make objective choices, not subjective choices. What is best for Karyn is best for both of us.
Karyn needed me to try to make sense of what is happening. She needed me by her bedside when she could longer tell me I was her husband. She needed me to learn how to give her diabetic shots. To learn how to clean her trach and re-vent her. To feed her through the GJ tube. To push her to walk another lap and then another. To know when it’s important to stop talking and just listen. To know when it’s important to pull up a chair and sit by the bed and just be there. To know when it’s time to hold her hand gently and let her feel the love that flows from my heart to her heart. To laugh with her, and to dry her tears.
Karyn needed me to tell her it will be okay when she knew this may not be true. She needed us to be us. That is the most reassuring thing anyone of us could do. And of course, I need Karyn in all the ways, big and small, that get me through the day. Maybe this is obvious; there are many options when fighting LAM and lung disease, but going it alone is not one of them.
You do need somebody when you are plunked into LAM and Lung world. I had to be strong. I had to make sacrifices for us; willing to move away from home, family, friends and work. I provided care, coordinated our days, drove Karyn to the Center for Living, to doctor appointments, attended lectures, went shopping, carried our heavy loads, did laundry, cleaned up behind us and then sat and waited.
We took it together side by side, down rough roads, and smooth roads, up hills and down hills and even off road. When the mountains looked so high, I wondered how we would ever get over them, and yes, sometimes we did slide off the road into the ditch.
I did what I did to be there, not just for Karyn but for me. I will never be the same person I was before Karyn was diagnosed with LAM and I would not want to be.
I am a napper and look forward to each weekend when I can grab a two-hour sleep in the middle of the day. But I never napped in all the months at Duke. Giving care operates on a 24 hour clock. Sleep when it came, came with one eye open, and both ears trained to hear any sound that was not a sound of the night. How strong I had become; I did not sleep not because of worry but because Karyn needed me to be strong and to help her.
Making a meal, packing lunch for the rehab sessions at the Center for Living, sitting by the bed, just holding a hand. Do anything just to make her day, every day, because you just don’t ever know if this will be that fateful last day.
To Pam, To Helene, To Randee, those caregivers who brought me respite and allowed me to return to home and work while taking care of my wife. We start out strong. We figure it’s going to be a long haul and we think we can do just about anything to help our loved one through transplant. We’re the caregivers. We know our days will change, our routines will be rewritten, but truth be known, we don’t have a clue what’s ahead of us or for Karyn. We get stronger, because the demands of LAM, of lung disease, of transplant, require us to raise our game. But Pam, Helene, Randee, myself do that because we would do anything, anything at all. We’re the caregivers.
Hanging in there as a cheerleader for the most courageous woman that I have ever met was the greatest accomplishment of my life, and I will go to my grave knowing that I will never be a better man than I was during the time I was with my wife, Karyn. I embraced it and performed it to the best of my ability. I will never have any regrets and never have the “I could have done this better” syndrome.
I think it was Hemingway who said that a man is defined not by the way he lived his life, but by the decisions he makes at the apex of stress. We are the sum of our actions in one or two critical testing moments. Some moments were incredibly difficult, but there was also another side to it; it somehow seemed like an amazing privilege to experience the heightened pure love of those days, with everything but love, pain and small comforts stripped away. I would not wish what we went through on another couple, but the intensity of love in those days was a gift we will never ever forget.
While exhaustion and sadness are givens on both sides of the equation, this was also a time of distilled love, and a sparkling clarity of what is most important. The intimacy of caring for my wife brought me to a place of love I could not have imagined and the memories remain most precious.
Hold fast, hold hands, forgive the trespasses.
Blessed be the peacemakers, and even more blessed be the caregivers.
It was the best of times.
It is the best of times.
Thanks for your care,
Richard
Help Wanted: Inquire Within
On Both Sides
Sometimes caring and help from others is hard to take.
We are fed the nonsensical belief in our culture that we all should be independent, all the time. Our culture rewards the doers and the achiever; there are no awards or big salaries for being good at praying or contemplation or meditating. Our culture supports our taking pride in being self-sufficient, so it is very humbling to have that arrogance stripped away when circumstances force us to depend on others for the very basic necessities of life.
I think it comes down to pride. I am not used to asking for help. More times than not, I was the person who others turned to for help; that has changed now with LAM and waiting for transplant. It matters to me that the simplest task can become complicated and difficult. That a trip to the supermarket is daunting. It matters to me that I cannot simply do whatever I want, when I want, and how I want. I have to take big swallows of my pride and realize that my life has changed whether I like it or not. I will be honest with you. I don’t like it one little bit. I want to be normal, do normal things, and I hate relying on others. It matters to me I am no longer self-sufficient, and I struggle to sustain my independence, because it acknowledges, at least for me, that LAM and its damage is being kept at bay, at least for the moment.
Karyn, you do not like the way LAM has changed your life, and I, for one, am glad. Not liking it means you have the strength to get a little angry, a little frustrated, and continue the fight and not go gentle into the night. Xanaxers, you hear that?
Staying proud with my bruised pride is yet one more of the challenges. I must accommodate and compromise with my pride. I can no longer take care of my granddaughter. I can only put her on a blanket and place the toys by her. I can no longer pick her up.
I would sing to her even when breathing was so hard—Good night my love, sleep tight my love, may tomorrow be sunny and bright, and may all your dreams come true—it was my gift to her and to me. I can no longer walk my dogs. I can no longer do. It seems all I do is sit in my chair, watch TV and eat.
My loss of control over my life like every loss needs to be mourned. It all comes down to pride and it is tough to give up. Sure part of it is pride, and I just hate to burden others. Everyone tells me what I can do, take it easy, don’t overdo it, just relax. But I feel guilty about just lying around and having my husband do everything when he comes home from work. So sometimes I overdo it, but I feel if I can still do the little things, I am going to continue doing them and when I can no longer perform my simple little tasks then I will feel less guilty and let him do things for me.
Karyn had a need to continue her independence as long as possible, and I had to step back and allow her to do those things that she was capable of without hovering, even though it was my absolute joy to be able to help in any way I coul
d. I would try to do things before she asked, and then sometimes she would say that I was hovering, and she would say, “Give me air,” and I would laugh.
LAM knocks the stuffing out of you like a scarecrow in a bad windstorm, and as transplant approached, and her strength withered, she was able to accept the situation and accept my help more. My helping did not diminish Karyn in any way. Her gracious acceptance made her appear stronger than ever, a strength that astonished me and her mantle of grace inspired me to be so much more. She had inquired of help within and grace became her.
Which is worse? Having to swallow your pride and ask for help or being the caregiver watching helplessly while seeing the love of your life struggle with the most simple of tasks? I was blessed that Karyn willingly allowed me to help. She gave me a gift by just being with me, and especially by asking me to do things. The opportunity to help allowed me to express my love by doing something. I knew Karyn was fading when she allowed me to wash her red and white underwear, and I was so happy, not coming back with pink panties. I loved preparing her lunch for rehab, picking her up after rehab, taking her to the hairdresser, drawing her bath. Doing. Being. Caring. By receiving, Karyn was letting me feel useful.
Some LAMMIES or LUNGIES cannot overcome the loss of control and the loss of pride. Remember the times when you were there to help others, did you think they were lesser people because they needed help? Did you think they should be embarrassed? I bet not. So do not think of yourself as being lesser because you need help. Accommodate and compromise with being prideful. Being proud is something else—you, like Karyn, have a lot to be proud of.
One of the greatest gifts I can give to others, is to allow them to help me as I need it. Often, if not always, help and assistance is the only thing they have to offer, and they want desperately to help me. I understand completely the pride issue, and I have been found guilty more than once in family court. I have tried to replace the pride with grace, to convey to my family and caregivers, to Helene, to Randee, to Pam, to Susie, to my Richard, and all the others that they are truly making a difference in my life. It helps fill my helpless void.
The Taste of Air Page 10