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The Alpha-1 Holiday Wish List: Touching, Inspiring

In the winter issue of Alpha-1-to-One magazine, we invited readers to send us a personal “Holiday Wish List” related to Alpha-1 Antitrypsin Deficiency.

We said we’d include as many as we could in an upcoming article, and we offered a $500 gift card to the wish list we judged best. The rules were simple: keep it short, 300 words or less, and no one on the Board or staff of the Alpha-1 Foundation, Alpha-1 Association or AlphaNet was eligible. We received lots of touching Alpha-1 stories and wishes.

The winner is Shaina Western of Reno, NV, who writes:

This year I was diagnosed with Alpha-1. My doctor thought I had ‘Bird Flu,’ so I was made to wear a mask in the doctor’s office. I was referred to a pulmonary specialist, who said I had developed asthma at age 49. After many tests, I was finally told I had Alpha-1 – the first in my family to be diagnosed.

My father died at 52. The doctors said smoking caused his emphysema. As a child, I watched him suffer. He gurgled as he slept. He had to retire early (age 50) as his health had deteriorated so badly. My mother always blamed him because he smoked, and I grew up thinking that. Many people, including my own family, are in denial about Alpha-1.

My Alpha-1 wishes include:

  1. Doctors educated about Alpha-1, so all patients with upper respiratory conditions are tested to rule out Alpha-1.
  2. Medicaid in any state should be required to do normal referrals to specialists, so Alphas can receive the same care that others do, regardless of income.
  3. Laws to protect jobs, so employers cannot write up Alphas up for medical reasons due to illness.
  4. I would like to see my children grow up healthy and not have to worry if they will have food and clothing because of my health issues.

Jennifer Lue of Oakley, CA:

My list is short. I’m not in any need of food or clothing, nor a warm place to lay my head, no toys or fancy cars, no shiny diamonds or gems. I wish for as many healthy days as possible; to continue to work to help support my family; no need for oxygen to keep me sometimes grounded; and as many days as possible to continue to educate as many people as I can about living with Alpha-1.

Christine Hannan of Bullhead City, AZ, and her husband belong to a “Renaissance recreation” group called The Adrian Empire:

A friend suggested having a Renaissance Faire to raise some money for the Alpha-1 Foundation, a goal of mine since two siblings and I were diagnosed with Alpha-1 in 2000.

We got our Faire off the ground in 2007, and we were able to donate $500 and start getting word out about Alpha-1. We did it again in 2008, but with the bad economy we were unable to donate. However, we now have three casinos who want to help us with sponsorship, so we can generate more. I am stepping down as coordinator this year. I will still work on some of the Faire projects. As an Alpha, I can choose to do something that will be positive and give me a goal, or I can just give up. I refuse to let it win!

My wish is that this Faire will be successful, not just this year but for many to come. It could heighten Alpha-1 awareness and raise funds for Foundation research.

Kaitlin Boyd of Coram, NY, writes about her aunt:

Her face was shining. I could tell she was smiling, even behind the hospital mask she wore to protect herself from germs. My aunt was dancing at my brother’s wedding only a few months after having a double lung transplant. Last year, she could barely stand, and there she was dancing the night away!

Alpha-1 has deeply affected my family since my aunt got sick many years ago. My aunt, uncle, and mother are all ZZ alphas, while my three brothers and I are MZ carriers. This year, my wish is that my aunt continues to thrive with her new lungs. She was given a second chance at life and she definitely deserves it! Secondly, I need my mother and uncle to stay healthy and continue to keep their lung function high. My mother, aunt, uncle are the most caring and selfless people I know. No one deserves health and happiness more than them. And I wish health for my whole family.

Valerie Tinnes of High Bridge, NJ:

My first wish is to be here for Christmas, 2033. My second, that I share these future Christmases with my daughter, whomever she chooses to spend her life with, and with many grandchildren. Now if I could get those two, what a wonderful full life I would have. But I have a couple more.

  1. That my daughter and future grandchildren stay healthy for long, long lives
  2. Make oxygen smaller and lighter to carry
  3. Keep the doctors and the Foundation working hard to treat and cure this nasty condition
  4. If I find that I need a transplant, I get healthy lungs, and for once in my life recover quickly and fully – and then I won’t have to tell my family and friends, “I can’t.”

Kristi Tinnes (Valerie’s daughter) of High Bridge, NJ, wishes…

  1. that my moms’ lungs keep working
  2. that each Alpha patient have a meaningful Alpha-1 relationship and keep talking with friends
  3. that the Alpha-1 Foundation keep everyone inspired to fund research
  4. for good breathing, good health, family and friends together for the holiday, and of course, tons of delicious Christmas foods!

Helen “Cathy” Gould of Indiana, PA:

My wish for 2008 was to have new lungs. On March 24, 2008, I was called in for my transplant evaluation. My best friend and caregiver accompanied me. We entered the large room for all future lung transplant recipients. What an awakening it was. I noticed a young boy coughing constantly, shoving mints into his mouth trying not to cough. What I noticed even more was the look of this boy’s parents, their faces worn by stress.

To my left was a woman in a wheelchair, on oxygen, with tubes everywhere. I knew she had only days to live if she didn’t get a lung transplant. Then a woman seated directly across from me asked if I was someone’s caregiver!

All of us spent a week being evaluated: more testing, a cardiac cath, more blood work. A few couldn’t make it through the week. I realized I still had much quality of life. I could go to the YMCA, to church, to the grocery store. I eat well, sleep well, have a wonderful support group, I have nothing else but Alpha-1, and my augmentation therapy is working. How blessed I am.

The transplant center said I’m too healthy right now for a lung transplant. I will be evaluated every six months. I have a few bad days, but I’m enjoying each day and all the surprises it may bring. For 2009, I wish that any of the other patients that cannot wait, get their new lungs.

Allison Corron of Waukee, IA:

Last month I married an Alpha. I wish…

  1. I knew more about Alpha-1 so I could better understand what he goes through
  2. I could help him when he can’t stop coughing, instead of sitting by helplessly
  3. someone would develop a way to deliver the protein he needs without needles
  4. airline personnel were more accommodating of his oxygen concentrator when he travels, rather than treating him like a potential criminal.
  5. medical personnel were better trained to test for Alpha-1; maybe his disease wouldn’t have gotten so severe before he was diagnosed.
  6. we had the rest of our lives to share our joy and love with each other, family and friends – oh wait; thankfully, WE DO!

Michael S. Nachman, Farmington Hills, MI:

I want to be able to play with my grandchildren. OK, so my two boys are only six and 10 years old now, but I have so many hopes and dreams for them… and want be there to see them all come true. I can’t be sure that I will, and that terrifies me – not only for myself, but for the burden it would place on my family. Having lost my father at a relatively young age, there is little I fear more than putting my wife and kids through the same loss.

So, I can only hope for a cure, and be as patient as I can. With the assistance of the Foundation, researchers, volunteers, and generous others who contribute what they can to help find a cure, I know we will get there. Perhaps this holiday season is too early to hope for, but one can dream, right?

Kathleen Bell, Southaven, MS:

Usually I don’t ask for anything for myself. I’m a giver, not a receiver (unless you count receiving a Z from each of my parents). I would love to wake up Christmas morning with a big healthy set of lungs and a fully functioning liver (not actually under my tree, yuck!) I have end-stage liver disease and Alpha-1. Oh, the thought of being able to breathe easy and to have a good glass of spiked eggnog on Christmas day.

If that wish is too big, I would be very satisfied with the knowledge that one day there will be a cure for both.

Audrey Miller of Tulsa, OK:

I lost my mom in 2006. Thanks to hospice care, she was able to pass from this life at home. What a privilege and an honor it was to hold my mom as she took her last precious breath. We didn’t realize that her prepaid burial did not include transportation, so when she passed, I had to sell her car that she left to me, to send her body back home to Washington state from Texas to be buried next to my dad. So I really need a car. My real wish is to have my mom back, but we all know that is not possible; so my second wish is to have a car this year.

Joseph Mazzara of Welches, OR:

I am an Alpha who has also developed congestive heart disease. This is not a setback but a push to better use my energies in a positive direction, or better said, “Major in the majors and not the minors”.

This past year I served as a national delegate to the Democratic convention in Denver which nominated Barack Obama for President. I was later elected to serve as first delegate to our Congressman in the Third Congressional District in Oregon.

During this past year I have met Hillary and Bill Clinton, Madeline Albright, Jimmy Carter and countless others and I have introduced them to Alpha-1. I have been nominated to serve on a state health commission to provide affordable health insurance to all Oregonians.

I have also been elected chairman of Transitions Global, an organization that rescues children who have been sold for sex trafficking.

I mention all of this not because I am vain, but because it should serve as an example of what one person can do, even if afflicted by a condition that limits us physically, but not our spirit.

I guess one might say Christmas is a way of life and not a season.