Margarita Arroyo

First post: Jan 2, 2019 Latest post: Sep 19, 2020
Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support, prayers  and words of hope and encouragement. Thank you for visiting!!

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.

I look forward to sharing my journey with you. 











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