Hello, My name is Frank and I was diagnosed with Pulmonary Fibrosis (IPF) in the early part of 2007. I became symptomatic in the fall of 2006 with a cough and shortness of breath. I didn’t think much of it because I was overweight and out of shape. Not to mention I had just quit smoking after 25 years. I had my first heart attack at age 39 and that was the warning sign that everyone including me missed. In the beginning I was in denial. I still rode my motorcycle how could I be sick? As time progressed so did my disease. As things progressed the reality became more prevalent. As I got sicker it was a different type reality. I am going to tell you a brief summary of my journey down the road less traveled and how determination and perseverance are why I am here today.
For several years my Pulmonologist treated and stabilized the progression of my fibrosis. I lived a fairly normal life. I worked and traveled and enjoyed being with my family. Eventually I started using supplemental oxygen to breathe easier. The cough got worse and the oxygen increased. Then one day on my way home from work my oxygen tank emptied and it affected my ability to judge the traffic. I was on my motorcycle and tried to stop hard. I lost control of the bike and laid it down. I landed on my chest and slid 40 feet down the street before stopping. The trauma set my progression in motion and this time there was no stopping it.
You will often hear transplant patients and medical staff talk about “bumps in the road”. These are the little things that cause some difficulty in life as a result of the illness or the surgery. Most of the time they occur after transplant and can be fixed with some treatment or adjustment in medications. I was the lucky one. I had my bumps in the road before my surgery.
For my first bump I was at my cardiologist and explained to him that I had a really bad cough and I was concerned about the stress on my heart. So he put a monitor on me for 24 hours and that’s when we found out my heart rate drops below 40 when I sleep. For those that don’t understand what that number means a good athlete will slow down to around 40 beats and I was no athlete. When the doctor said we need to put in a pacemaker I became emotionally unraveled. “I need to check with the transplant team first. I don’t want to be disqualified for a transplant because of this” All sorts of emotions were running through my head. I can die from having my heart stop or I can suffocate from my lungs not working. Some tough choices needed to be made. The next week I was having the pacer put in.
My next bump was really scary. I had been complaining to my doctor that it felt like there was something in the back of my throat like my sinuses were bothering me. I told him I could not blow it out my nose nor clear it. He attributed it to inflammation. Finally when I when I started choking on my food he had me see an ENT doctor. Well when he found the golf ball size tumor in my throat I figured we were done, my life was over. The biopsy was inconclusive so they referred me to the Mayo Clinic where they did a different type of biopsy to find it was not cancerous. But I still would not be able to get listed for transplant with the tumor there. The transplant team was concerned it would obstruct my airway. The ENT surgeon felt my lungs would not survive the surgery to remove it. So once again I faced off with the grim reaper and this time I was going to kiss his butt. Perseverance will prevail.
By this time I am on high levels of oxygen and I get around on a scooter because I can’t walk without my oxygen levels de-saturating to a dangerously low level. I was tired and running out of fight. I knew I needed to do something fast. I set up an appointment with the social worker from the transplant team. I told her I was going to die and I was done fighting. The ENT and the Transplant surgeon could not agree on what to do so I told her that I wanted a meeting with all my doctors the Primary Care, Pulmonologist, Cardiologist, Transplant team, the Surgeon and even the doctor from Mayo Clinic. I told her we will all meet here at the hospital on a Saturday morning and we are going to discuss my case and get this resolved. Then we will see who wants to sign my death certificate in the presence of the other doctors. She advised me that it would be difficult to get everyone together at the same time and I reminded her that a subpoena would take care of that problem. Ironically I received a call that week to go in and test to see where my numbers were at. I was listed a few days later and I got my call in two weeks from the time I was list.
I am now 18 months out from a double lung transplant and I live a fairly normal life. When you have Pulmonary Fibrosis and you receive a lung transplant you exchange a terminal disease for a chronic one, but the benefits far out weigh the risk. I will take anti rejection meds for the rest of my life and I will need to be conscience about my exposure to germs and bacteria but a small price to pay for the gift of life. I have said this ever since I was diagnose and I will forever preach this “YOU ARE YOUR BEST ADVOCATE” so don’t ever give up and fight till you get what you need.
God bless. . ~Frank J. Giunta~