Brian Zionts-Bernstein

July 27, 2017

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“Life is not measured by the number of breaths we take, but by the moments that take our breath away.”

My journey is a story of two families. My family and an extremely generous family, that continues to remain anonymous to me.

In 2007 at the age of 42, I was diagnosed with an ILD, Interstitial Lung Disease. I had a lung biopsy in the Spring of 2008. I was diagnosed with Idiopathic Pulmonary Fibrosis, IPF. Pulmonary Fibrosis is a disease without a cure and it is terminal. The median life expectancy is 3 – 5 years. Kym, my wife, and I were devastated. IPF’s progression is unpredictable.  How do we move forward?  What do we tell our 12 year old son, Sam?  Should we move up Sam’s Bar Mitzvah, which was scheduled for a year away, May of 2009?  Sometimes a patient can go years with a slow steady decline, which luckily turned out to be my path.  However, another path is where the patient can have an acute exacerbation and decline extremely rapidly.

From wise advice we received, we told Sam the bare minimum.  We told him “Dad has issues with his lungs and is seeing doctors to deal with it.” At the suggestion of Dr. Hoffman, my first pulmonologist at the Hospital of the University of Pennsylvania, we brought Sam to meet him.  When Sam was ready, he asked more specific questions.  That didn’t happen until September of his senior year of high school in 2013.

We spent time on the internet trying to educate ourselves. I was surfing the Pulmonary Fibrosis Foundation website, looking at the upcoming events. That is how we found out about The Wescoe Walk. Kym and I were and are grateful to have found Jen Wescoe and the Wescoe Foundation for Pulmonary Fibrosis. Finally, someone who understood what we were going through.

It wasn’t easy, but we made some decisions and moved forward with our lives the best we could. I went to the Hospital of the University of Pennsylvania, HUP, for follow up appointments every 3 months. I continued to work. I continued to volunteer as an Assistant Scoutmaster. We went on summer vacations including a Bar Mitzvah tour to Israel and MOST IMPORTANTLY… we prayed for a miracle!!  

My lung functions were fairly stable with slight decreases over the next 6 years. During the Fall of 2013, my lung functions started to more rapidly decline. My daily lunchtime walks stopped and became power naps in the car. In the early Spring of 2014 I was put on supplemental oxygen.

My lung functions continued to drop and one of the doctors at HUP suggested I be evaluated for a lung transplant. He said although you are not in need of it yet, it is insurance for you when you do need it. Little did I know at that time how right he was. I was approved for a transplant in July of 2014, but not listed yet.

The disease was taking a hold on my abilities to accomplish my daily routine. I would come home from work and basically collapse on the sofa. Kym would go upstairs and turn on the oxygen concentrator and bring down the cannula and tubing so I could hook up to the in-house oxygen. I would do my best to minimize the use of the stairs… trying to only go up them once a day. Taking a shower became absolutely exhausting. It would take me 1 – 2 hours afterwards to recover my strength. When I told my transplant pulmonologist about this, she asked, “How much oxygen are you using in the shower?”  Kym and I looked at each other and then I responded “None”. Dr. Shah looked at me with a smile, “Start using it, you are allowed.”  I had no idea. That made a huge difference.

Managing this new obstacle was difficult, but we did it. We even travelled to Europe that summer. Flying with oxygen, using it on the cruise ship and all of our tours… very difficult but somehow we persevered.

In July of 2014 I started pulmonary rehab at the local hospital leaving work early 2 days a week. When I started I was using 6 liters per minute of supplemental oxygen to do my workout. My need for more oxygen quickly increased. On 4 out of 6 stations I was using 8 liters per minute, 10 on another and 15 liters on the 6th. However, I did not let this discourage me from my goal… to be as physically fit as I was able to be pre-transplant. All of this exercise would benefit me in my recovery.

Humor played a big role in keeping our sanity. In the Spring of 2014 I was put on supplemental oxygen. I not only had an oxygen concentrator at home, but I eventually got  one along side my desk at work. If you are not familiar with these devices, you are tethered to the machine with a 50 foot hose. One day I was coming out of a conference room with the tubing trailing behind me. A coworker was coming up the hall and stopped. He looked at me and then at the tubing with a quizzical expression. He said “I guess you won’t be playing hide-n-seek anymore.”  I belly laughed knowing he meant no harm, but just adding levity to a grim situation.

At my August 2014 follow up appointment, my transplant pulmonologist said it was time to be listed. I was officially listed on September 17, 2014. Then the waiting game began. Fortunately, I was still able to work, which helped keep me from focusing on receiving that call 24/7.

Kym received the call at work from Eric, my nurse practitioner,at approximately 1:30pm.  I had just left the office and was on my way to pulmonary rehab.  My cell phone rang, but it said “NO CALLER ID”.  I let it go to voicemail.  I listened to the message as I was driving to pulmonary rehab.  It was Eric, “Brian, We have lungs for you”.  I turned around at the next interchange and immediately headed home. Sam had just completed his first semester of college and was home on semester break.  He was being a typical teenager and laying around all morning.  Kym called him, “Take a shower and pack a bag… we’re going to Philly… they have lungs for Dad!”

We gathered as a family, put our bags in the car and took off for HUP. We were given a two hour window to get there. Kym, driving much like her nickname, Mario Andretti, made it to HUP within two hours… this was even during the start of rush hour traffic. I was admitted to the hospital and in a hospital room by the time Kym finished parking the car. They told me that they would be taking me into the OR at 7pm. Those hours from 4 to 7pm are somewhat of a blur. Many people coming in and out of my room and testing me for this and that. I do have a memory of a nurse asking me if I wanted to hear my diseased lungs… I did. She gave me her stethoscope and I heard the signature velcro sounds from my diseased lungs.

Through the generosity of a family in grief, I got a second chance at life!  They made a decision to donate their loved one’s organs and tissue.

On the 8th night of Chanukah, December 23, 2014 into the 8th day of Chanukah, December 24, 2014 I received a gift… a double lung transplant… the GIFT OF LIFE!!!

Earlier this week, I celebrated  my 2 year and 7 month lungiversary. And because of this gift I received, Kym and I got to celebrate our 25th wedding anniversary. I am grateful to be here to celebrate!!  I am doing my best to honor my donor and donor family by taking care of this most precious gift!

Our journey has not been an easy one. A transplant is not a cure for the disease, but rather swapping one disease for another. I am now immuno-suppressed. I have had and continue to have my share of complications along this journey, which has found me back in HUP multiple times.

Through the help and prayers of many people, my family… especially my wife, Kym, my medical team, my friends, acquaintances my donor and their family  … I continue to LIVE LIFE…

Because of my transplant I am able to share the story of my journey with you and tell you about my successes post transplant.

Because of this “Gift of Life”, I am able to enjoy walking again. I regularly walk with our dog Latke, which includes hills.

Because of my transplant, Kym and I were able to attend the 2016 Transplant Games of America, where I walked in the 5K, 3.2 miles.  

Because of this “Gift of Life”, I am getting to experience our son’s college journey on his way to becoming an electrical engineer.

Because I received this transplant, Kym and I were able  to celebrate our 25th wedding anniversary on March 29, 2017, touring Ellis Island without supplemental oxygen. I look forward to each day, knowing that if I did not have a lung transplant two years ago, I would not be here today,  celebrating and enjoying  LIFE!!

As part of my journey I have become an advocate for Organ and Tissue donation.  I need your help!  Here in PA there are more than 8,000 people on the waiting list, but there are not enough organs for all these people. One person dies every 18 hours waiting for a life saving transplant.  That’s almost 500 people a year just in PA.  Did you know that 1 organ donor can save up to 9 lives with solid organ donation and with the tissue that a donor can donate, up to 75 lives can be enhanced.

If you are not already a registered organ and tissue donor, I implore you to become one.  You can register on the National Donor Registry at DonateLife.Net, you can go to OrganDonor.Gov and select your state from the dropdown list at the top and you will be directed to your state’s registry or you could answer yes to organ donation the next time you renew your driver’s license. Make sure you discuss your decision to be an organ and tissue donor with your family so they know your wishes.

Thank you, Jen, for many things… thank you for giving me the opportunity to share my story about my miracle and to honor my donor by Living Life!  LIFE IS GOOD!!!

Without the organ donor, there is no story, there is no hope, no transplant. But when there is a organ donor, life springs from death, sorrows turns to hope, and a terrible loss becomes a gift.  —   UNOS (United Network for Organ Sharing)

2014 Wescoe Foundation for Pulmonary Fibrosis

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