Carmen’s Remarkable Story

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Carmen's Remarkable Story!
I was diagnosed with Sarcoidosis 4 years ago. It affected the following organs: my heart, lungs, lymph nodes, and trachea. On July of 2013, I had a complete heart block. I was at work, just another ordinary day and I passed out. The ambulance took me to Cleveland Clinic where my first pacemaker was placed on July of 2013. My 2nd was placed on January of 2014.

Then I was referred to Memorial Regional in Hollywood and they saved my life! The third was placed on December of 2015 for pacemaker/ICD at Memorial Regional and a 4th surgery to replace one of the leads at Memorial as well. I had fluids around my lungs... I had 2 thoracentesis. They removed 1200 CCs from my left lung which was dark brown from the bacteria that had grown and they removed 550 CCs from the right side. I was hospitalized several times due to AFib and other heart issues.

I’ve had 4 surgeries due to my pacemaker/ICD.
I went to cardiac rehabilitation and it helped me get a little stronger, but than I was placed on high doses of Prednisone to put the Sarcoidosis in remission. I was weaned off slowly from the Prednisone and finished on June of 2016. Due to the side effects of the steroids I had cataracts on both eyes and had surgery on both eyes; have osteoporosis, which I get prolia shots every 6 months at the hospital; developed a hiatal hernia, which I take pantoprazole; diabetes, which I took metformin; muscle weakness; chronic joint pain; mood changes; weight gain; and Cushing syndrome. I had to start taking Xarelto, plus I take heart Medication for heart failure and diuretics for fluid retention.

To add insult to injury, I had to go on blood thinners because I fell down due to the Prednisone... I couldn't pick up my feet properly and I fell down; as a result of the fall had a blood clot. I have a frozen shoulder that I'm still going to therapy for. On August of 2016 I was hospitalized again with AFib and other complications. My insurance company referred me to Jackson Memorial in Miami because my team of doctors and Memorial Regional Hospital were out of network so they didn't cover my heart transplant here at Memorial Regional. I've had a bunch of tests to clear me for the heart transplant.

Once I was finally done with the testing, in October I had to go to Jackson and meet up with a whole new team of doctors. Jackson has not placed me on the list for heart transplant because they want to rule out lung transplant for the future. I went to Jackson last week and had a blood gas test, pulmonary function test, and a lung CT Scan. I go on the 22nd to get my results. I also had a 6MM walk on the 6th, an ECHO cardiopulmonary Metabolic Stress test on the 9th and a right heart Cath. on the 13th. Now they are suggesting an LVAD. I will have to do some new testing now for LVAD.

I am hoping that I can be listed ASAP after this because I would like to have a second chance at life. Praying for all my lung results to be good so I won't need a lung transplant as well. I have joined many Sarcoidosis awareness groups and thank God for the support and world of knowledge of these groups because it was very scary at the beginning when I was first diagnosed. My amazing family and friends have been there for me 24/7 and continue to be there for me.

I know it seems like a lot, but the struggles have also been a journey of faith, with my family, friends and the abrupt ending of my career. I loved my job and colleagues. I thank all of you who have stood by my side, supported me and proved what amazing people I have in my life. I'm hoping and praying for a cure.

Yay! Jackson has officially listed me for a heart transplant! On April 28th around 9:30 pm.

False alarm #1: On June 28, 2017
We were on vacation in the Florida keys. My daughters had went back home to work and none of us in the Resort answered the phone. Jackson called my first born and she called everyone of us... my mother answered her phone. She than called my second born and they were headed to the hospital and my sister, my brother in law and I were headed to the hospital
The emotions were all over the place. Scared, sad, nervous, filled with hope for the second chance on life that I could have. I hung up the cell after getting the call from doctor. I prayed for the donor family