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How it all began.....
I was living in Puerto Rico when I was diagnosed with Interstatial Lung Desease (ILD) with Pulmonary Fibrosis (PF) in 2014 a month before I retired from Air Traffic Control. PF is a progressive scarring of the lungs in which the prognosis is 3-5 years to live and one of the last alternatives is a lung transplant. My Pulmonoligist said my PF was due to auto-immune response and prescribed an inmunosupresent medicine called Cellcept. At the time, I was using 2 Liters of O2 only at night during sleep.
My health was slowly declining but I still felt well, even after Hurricane Maria which devastated Puerto Rico in 2017. I was still using 2 liters of O2 During sleep.
In April 2018, I had an exacerbation and my health started to deteriorate even more. I started using 3 liters of O2 during the day and 2L during sleep. In June 2018, my husband Harry and I decided to come to Minnesota in search of better health treatments. I visited Mayo Clinic where I went through many tests. The majority of results were normal however I gave positive for a test called Short Telemeres (my chromosomes are a lot shorter than normal) which can cause Pulmonary Fibrosis.
I then found out that the U of M has an ILD program, (which Mayo didn't) and feel fortunate to have had an appointment with Dr. Kim. I was then, diagnosed with IPF ( Idiopatic Pulmonary Fibrosis) and was prescribed an antifibrotic medicine called Esbriet, which by the way, completely takes away my appetite. Because of the Short Telomeres I had genetic testing and was diagnosed with rare a syndrome called Dyskeratosis Congenita which was not good if I needed a Lung Transplant because the Inmunosupresant medicines could really affect my bone marrow.
Since September 2018, my condition has deteriorated so rapidly that I had to consider looking into the possibility of lung transplant. I had a Bone Marrow Biopsy done with other tests & Thank God the results were good to go ahead with transplant. I passed pre-transplant tests and was put on the Lung Transplant list the last day of 2018- Dec. 31st. I now use 8-10L of O2 during rest; 15L during excursion & 9L during sleep.
It has been an emotional process, however, I have an amazing support system, my dear family, great friends, Pulmonary Fibrosis and Transplant Support groups which have helped me inmensly. I also appreciate the help & great support from my Pulmonologist Dr. Kim & staff Alan, Beth & Katie. My Transplant Coordinators Dianne & Randy. My Social Worker Liz & all the health professionals involved in my process. The prayers, love, hugs and encouraging words have impacted me in such a positive way that I have no doubt I will have a successful transplant, a good recovery (even though I am fully aware of the bumps in the road) and many years of breathing well and living a happy, simple, healthy life.
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