Help Jay Goldberg Breathe Again

Hi everyone, thank you for visiting our fundraising page for Jay Goldberg, our brother, father, husband, uncle, cousin and friend. I’m Jay’s brother, Allan, and I’ll be sharing a bit of his story with you below.

Many of you know Jay, but perhaps you haven’t been in touch recently. Some of you are here simply because you know one of Jay's family members or friends.  Thank you for taking time to visit our site and for considering donating any amount to support Jay and his wife Linda during this medically and financially challenging time. I’ll provide a quick update and introduction on Jay, and then I’ll share an update on where he is medically and why we are asking for your financial support.

Jay is 58 and the father of two sons, Michael and Matthew, and his two daughters in law Alex and Jocelyn. On March 31, 2018 Jay married Linda Hennigan in a simple and beautiful ceremony on a local Tampa beach. 

For those who know Jay, he is a kind, easy going, deeply patriotic, and good-hearted person who never fails to make me laugh. He’s always been adventurous, and loves skydiving and especially Scuba diving. He’s a person with strong opinions, especially politically and he’ll surprise you with some of his positions - especially where compassion is required. Jay spent over 20 years working as an elevator mechanic, and eight years as a New York City buildings inspector for elevators. He was a proud member of IBEW Local Union 3, where he had many friends, many who he remains in touch with today.  Jay always took immense pride in his work as a mechanic, and was extremely proud and serious in his role holding NYC landlords accountable for elevator safety and keeping tenants safe. His work with NYC included inspection of accident sites, including post 9/11.  

Unfortunately, about six years ago Jay was diagnosed with a form of arthritis that landed him on disability as he was unable to pursue the work he loved. That’s when he relocated to Florida to be closer to his sons.

Over the past couple of years Jay has not felt 100% and started to experience breathing issues. This past January, we realized the extent of his illness when Jay was diagnosed with advanced stage IPF (Idiopathic Pulmonary Fibrosis).

IPF is a progressive and irreversible lung disease with no known cause that results in scarring of the lungs. As scarring continues to worsen, the lungs cannot take in enough oxygen and it becomes exceedingly difficult to breathe. The disease is extremely erratic, with no way to predict the rate at which it will progress. In fact, the situation can change overnight without warning. In Jay’s case, the disease has accelerated and, since April in particular, his condition began declining more rapidly.

Thankfully, in mid-May, Jay was approved for double lung transplant eligibility at Shands Transplant Center in Gainesville, FL. Jay’s condition worsened quickly in the ensuing days and as recently as Tuesday June 19th, his oxygen level dropped as low as 83, struggling to get above 85. This was critical as the body’s organs start to shut down below 83. Things were getting scary, and Jay and Linda were told to go to Shands so they could monitor him and provide stronger oxygen therapy. Miraculously, on the same day, he received the life-saving phone call. Moments later at about 5pm Linda called me to say “we have lungs!”  Emotional falls far short of describing that moment.

Initially, we understood that surgery would take place around midnight. But there was a lot of stop, go, stop, go. After a frustrating, anxious and emotionally charged 16 hours the lungs finally arrived and Jay was taken to surgery around 5pm Wednesday. As you can imagine, this is a complex serious surgery that typically takes about eight hours involving a complicated procedure of removing his current lungs and separating the lungs from the heart, while keeping the heart and blood functioning via medical technology. Unfortunately, during the operation complications developed with Jay’s heart that got serious and scary. He was very sick. Ultimately, the surgical team got things under control and after 11 hours Jay had new lungs and they were functioning great!

Post-surgery Jay was taken to the Intensive Care Unit (ICU) where you can probably visualize (or view some of the attached photos) that he was connected to a myriad of tubes, leads, medicines, monitors and other machines, including a ventilator to help his new lungs breathe. Jay remained sedated and asleep for the next 36 hours. They finally woke him around 3 pm Friday to extubate him (remove the breathing tube) and start him on the road to recovery.  Nothing can describe the emotion i felt upon seeing my brothers eyes open again. 

Since Friday afternoon it’s been up and down, one step forward two steps back type of progress, but as of Sunday afternoon he’s doing better, including getting out of bed Monday for the first time to take his first steps. Considerable progress just four days after major surgery!  If he continues to make substantial progress he could be out of the ICU by Thursday 6/28. Once he’s out of the ICU, he will continue the path to recovery with a goal of getting out of the hospital in approximately one month if all goes well. 

After leaving the hospital, Jay will need to remain local in Gainesville (which is two hours from his home in New Port Richey) near the hospital for at least three months for monitoring and follow-up appointments. Throughout his course of treatment the costs and bills will pile up. Double lung transplants alone cost approximately $1 million dollars. Luckily, insurance will cover most of the procedure and related costs. However, there is still an enormous burden for deductibles and out of pocket expenses, as well as costs related to ongoing supplemental care, short term living expenses, and maintaining all their regular expenses back home. While the cost will decrease with time, some expenses will be ongoing for the remainder of his life including expensive immunosuppressant medications, new annual deductibles, regular travel to the transplant center, etc.  

This is where Jay and our family would definitely appreciate your support! As I mentioned earlier, Jay has been on disability for the past five plus years so lives on a fixed income. Linda, who works as a Distribution Team Leader for a tee-shirt company, is already on an ‘unpaid’ Family Medical Leave of Absence so she can be Jay’s ‘primary caregiver’, so she has no income and will not for at least four months until they get back home and she can return to work.

Our goal is to relieve as much of the financial burden as possible so that Jay can focus on recovering to his best ability and Linda focus on helping him recover.  And so, it is with sincere gratitude and thanks that we ask you to consider donating to Jay’s fund, no amount is too small.  All funds received will go towards Jay’s medical expenses (surgery, medicines, doctor visits, etc.), medically related temporary living and transportation, and while Linda is on unpaid leave to other everyday expenses such as car payments, rent on their home, and more.  As a matter of transparency, I will personally manage the funds and allocations, with backup and oversight from other family members.  Most of the funds will be moved to a non-profit medical account, which is similar to a Health Savings Account. The remainder will be kept liquid to pay for non-covered expenses.  

Thank you for taking the time to visit our site and to read Jay’s story, and thank you for your support! Feel free to contact us with any questions you might have.  I believe you can sign up to receive updates or post comments below.  You can also help by sharing this site with your friends and family adding a kind word of your own, just use the Facebook link below.  

I also want to thank Lauren for her help creating this site. And most importantly, we all want to thank the donor and his family for giving Jay the gift of life and our family more years with Jay. Please ‘check the box’ on your driver's license to become an organ donor.  Give the gift of life to other families.

On behalf of Jay and our family,

Allan