Dani Klein Modisett: Why I'm Glad I Don't Have A Daughter
'Short Skirts Don't Rape. Rapists Rape'
My Mom Needs a Double Lung Transplant to Survive
Amber, left, and her mom, always smiling.
My family has often relied on humor to get through difficult times. For example, it was entirely appropriate -- to us at least -- that when my mom got the news that she would need a double-lung transplant, she created a kicky catchphrase for her ordeal. Yep, she now ends her emails to me with the phrase, "Go lungs!"
My mom was diagnosed with a disease called allergic bronchopulmonary aspergillosis, or ABPA, at the age of fifteen. There is no cure, which means she's lived with ABPA since Nixon was President.
The disease isn't hereditary, and she's the only one in my family who has it. Aspergillus, the fungal culprit that causes it, is unlike most other fungi, viruses or bacteria in that it doesn't invade lung tissue. Instead, inhaled aspergillus spores travel into the lungs where they inhabit the warm, wet environment on the surface. In 1 to 2 percent of asthmatics, an unfortunate group which includes my mom, the spores' presence aggravates the lungs to no end, creating perpetual inflammation and irreversible scarring.
Interestingly -- or not -- these spores are floating around in the air just about everywhere on Earth; I've probably breathed them in without ever knowing.
Despite decades of treatment with asthma and allergy drugs, as well as inflammation-controlling steroids such as prednisone, and the occasional round of antibiotics, my mom's lungs began to deteriorate rapidly about four years ago. Around that time, I visited for the holidays but wasn't prepared to see her connected to a silver oxygen tank and bloated from high doses of steroids. For the first time, I acknowledged a truth that had always existed in the back of my mind: This disease was more than just an annoyance, like, say, a bunion or a cowlick.
There is no humor in a humming oxygen-dispensing machine.
To make matters worse, as I was getting over my initial shock at my mother's appearance, I accidentally stepped on the tubing that was carrying oxygen from the machine into each of her nostrils. My clumsiness is legendary, but with this cringe-worthy stunt, I thought I'd outdone myself. The tubing flew off my mom's face and, to my own horror, skidded across the living room floor. I scrambled to pick it up and sheepishly handed it back to her.
Amber as a baby with her mom, Diane.
Just then my mom began to laugh and soon all of us -- my sister, brothers, father and I -- were laughing uproariously. What can I say? This is how we handle unbelievable circumstances.
Which is not to say that this whole process has been sunny-side-up. Now that my mom cannot breathe on her own without assistance, the oxygen tank has become a more or less permanent fixture in our family. Even when going out for just a few hours, an 11-pound tank accompanies her. This tank, tucked inside a small black bag with a shoulder strap, attended my brother's high school graduation; it was present on my wedding day.
Soon, my mother may be free of this burden. This Valentine's Day, as other couples exchanged carefully-selected Hallmark greeting cards, my parents arrived at Duke University Medical Center where my mom will undergo a double-lung transplant.
This is a weird sort of limbo: Her surgery is imminent, but the date is not yet set.
First, she must complete several weeks of intense rehabilitation to prepare her body for the physical strain of receiving two foreign objects where her lungs currently reside. I'm not speaking from experience, but from the sound of it, this rehab may very well rival the rigors of NASA astronaut training.
I'm awed by the surgical feat Duke's surgeons will perform, but I must admit, equally stunned by the price tag attached to my mom's surgery and recovery. The going rate in the United States for a gently-used pair of healthy lungs is over $500,000. Sure, insurance will cover many of their bills, but my mom will also require extended hospital stays, requisite doctor's visits and an arm's-length list of medications. These costs add up.
And then there's the small fact that my parents had to relocate to North Carolina temporarily. That adds rent on top of a mortgage, my dad's costs to fly back and forth to the job (in Florida) he still has and needs. When all is said, done and transplanted -- while I cross my fingers and two left feet -- my family will owe thousands of dollars in medical bills.
Of course, it's not just a matter of money -- I wish it were. I'm also anxious that my mom will be substituting one battle for another: Transplant recipients are at constant risk of rejecting their new organs, and this risk will remain for the rest of her life.
Still, my mom is unfailingly optimistic, and it's in my genes to share her positive outlook. Whatever happens, we'll deal with it, and I have no doubt that humor will see us through. For this reason, I've decided that just before my mom is wheeled into the operating room for this life-changing surgery, I'm going to cheer, "Go lungs!"
I think that will make her laugh.
Amber's family is working with the National Foundation for Transplants to help offset the cost of her mom's surgery and recovery. One way of raising money is an old-fashioned email campaign: If you, or someone you know, would like to make a donation, visit here or learn more at Amber's mom's Facebook page: Diane Fields Needs Lungs.
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In early spring I had what at that time was labeled as a bacterial or viral (or both). There was never a complete diagnosis although many were batted around. Many weeks in and out of hospital with huge doses of steroids and antibiotics I began to improve. Home with oxygen I expected to continue to improve and leave the tanks behind. By October we knew that I was not going to get 'we'll'. I had lost 70percent of lung function and would always be ob oxygen with a poor prognosis.
In late December I was approved for a double lung transplant at Duke. I am extremely fortunate that I am 45 minutes from Durham. My husband and have been prepping since then. He has been my best supporter. I thank God each day for his loving and caring of me. I could not have a better helpmate.
Exercising, loosing weight and studying has been our occupation for the last 3 months. We have had to weigh costs versus life style versus continuing understood health and the vision of life after the transplant. Duke University has been tremendous. They have been there with answers and help at anytime we have reached out to them.
I have read and studied the process before, during and after. I still feel the need to know but don't have the words for the questions. I know that many of my questions and fears will be answered with the experience. I continue to go forward with this life changing experience with hope and trepidation with God at my side. I feel very fortunate to have my faith and know that God is with me each day. He gives me strength and comfort.
I read your stories and am buoyed to continue on with a positive outlook.
Ann
My husband and I are headed to Duke in a week or so after months of screening for him to be placed on the list for a double lung and liver transplant. I hear so much hope here and wonderful success stories. Y'all are inspirational.
February 22 2011 at 8:25 AM Report abuse Permalink rate up rate down ReplyA dear friend forwarded your story over to me and I loved what you had to say. I had a bilateral Lung transplant on December 12, 2009. To celebrate my one year Anniversary on December 12, 2010, I walked a 1/2 marathon. I was never a walker before but felt the need to honor my donor and his family for their extreme act of kindness and generosity. I was in the hospital for 3 1/2 months with all kinds of little and big complications. Laughter was the main thing that got me through. Our family too deals with stress through laughter. I drug and carried "Hank the Tank" (oxygen) around for 7 years before being able to part with him as we had become fast friends. I did keep the concentrator in the house for about 6 months after transplant...never used it but there was a sense of security there.
Having you will be the best medicine your mother can ever have. My kids and husband were there the entire 3 1/2 months. My husband stayed up by the hospital and was with me every day from 8 am until 9 pm. He refused to leave no matter what I said. It is amazing how important family and friends are in crisis. I give complete credit for my recovery to all my friends that were by my side everyday. I live 2 hours from the hospital (Cedars Sinai in Los Angeles) and my friends had a sign up sheet to make sure everyone could make that terrible drive and not overlap each other. They were amazing. I had someone everyday unless I wasn't up for it (which was probably only once or twice). Life is good and breathing makes it all possible...
You think you appreciate life now...wow, wait until after the transplant. Everything is 300% better than it ever was before. Flowers smell better, rain feels heavenly, grass clippings smell fresher, the sun is brighter and warmer, the walk to the kitchen is so much shorter. The first time your mom walks up a movie theatre ramp and is not out of breath will bring tears to her eyes. Bending over to pick something up, tying her shoes and breathing normal, walking to the mail box, going shopping for as long as you want and never having to carry "Hank" again!! I still won't carry a purse after carrying oxygen for so long...I swore I'd never carry anything again. Granted...I never let my oxygen slow me down, I just hauled everything with me. I even traveled to Europe for 3 weeks and went on a New England cruise for a week and just took "Hank" along. It was great.
I will pray for you and your mom and we always said this is the hardest prayer there could ever be as you know in your heart of hearts that someone else has to die in order for you to heal. Thank goodness there are generous people out there that understand how important Organ Donation is. There is a slight sense of peace when a passed loved one is living on in another human being. I have heard this personally from several donors and so this also makes me feel more obligated to take care of myself and my new lungs....what a blessing!! Keep me posted on your mom's progress. Oh yes, I went on the list August 28th 2009 and was transplanted 3 1/2 months later. I really didn't think about it too much as I found that if I kept busy, time flew by....Blessings to all of you...
I am a double-lung transplant recipient - 7 years out, founding member and current president of the Lung Transplant Foundation (www.lungtransplantfoundation.org).
I can tell you that my family and I are eternally grateful for the gift of life from my donor family.
Diane is a friend of ours and deserves this opportunity. Go Lungs!
Praying for a miracle for you and your mom. They do still happen!
Dianne
New York City
I went through a double lung transplant at Duke in May of 2009. With all Duke's help and following their advice, I am doing just great. There will be ups and downs, but everything is achievable! Good Luck. You are at the best Hospital for the task. I was 44 at the time of the transplant and am looking forward to many more years.
February 18 2011 at 5:52 AM Report abuse Permalink rate up rate down ReplyI wish you and your family all the best. My Mother has pulmonary fibrosis and she is not a candidate for a lung transplant. I make every day as special as I can.
February 18 2011 at 5:43 AM Report abuse Permalink rate up rate down ReplyI just want to wish you all luck and your mother with the #1 luck and hope your family will never have to go through this again and im so glad she has yall there for support thats is #1 also sso i really do wish yall the best of luck and my prayers are with your family
February 18 2011 at 3:13 AM Report abuse Permalink rate up rate down ReplyTHEY CAN'T TURN YOU DOWN EVER. MY DAD HAD A TRANSPLANT AND DIDN'T HAVE ANY INSURENCE, I'D CERTAINLY CHECK INTO THAT ONE FOR SURE. GOD BE WITH YOU IN JESUS NAME AMEN AMEN
CALL THE TRANSPLANT UNIT'S ALL OVER USA
Lung Transplant - University of Chicago Medical Center
Transplantation Services - UPMC Lung Transplantation Program ...
AND THE LIST GOES ON AND ON
WHEN THERE IN THIS STATE FOR A TRANSPLANT SHOULD I SAY THERE VERY WEAK VERY CLOSE TO A SHORT COMING SO YOU NEED TO PRAY FOR HER NOT KNOCK DOWN WHAT HER DAUGHTER IS DOING.
GOD BLESS TO HER AND HER FAMILY
P.S. LOOK UP TRANSPLANT PLEASE GOOD NIGHT!
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