I appreciate everyone who has supported my family during this troubling time with patience, prayers, and acts of kindness. Although I will never be or feel ready to accept this harsh reality, I thought it was fair to share what has been going on.
Simple cold like symptoms turned our worlds upside down.
My mom, Miriam, has been very sick since the fall of 2018. What we initially thought was just a common cold turned out to be something much worse. Before the inevitable is asked, yes she did receive her flu shot.
On a Friday morning in early-November, mom was struggling to breathe. My sister, Eliza, RUSHED her to the emergency room. After several tests and x-rays, it was evident that she needed more assistance than the local emergency room could provide so she was quickly transferred to CHI St. Luke’s in Sugar Land, Texas. There she was given antibiotics and placed on heavy doses of oxygen but she was still fighting to breathe.
The fluid build up in my mom’s lungs caused tremendous discomfort and pain which she battled alongside her inability to breathe for 3 days. After aggressive negotiations with the doctors, she was intubated and transferred to the Texas Medical Center (TMC).
Still trying to catch our breath from rushing over to this new hospital, we were greeted by a pulmonologist who told us that mom had been immediately wheeled back to the operating room to get an ECMO placed in her. She had come back positive for flu and double pneumonia. He stated “We are racing against time” the first of many times we would hear that phrase.
With no signs of recovering after what doctors thought a weeks worth of ECMO could help with, she was diagnosed with Acute Respiratory Distress Syndrome, or ARDS, a condition that causes fluid to leak into your lungs, blocking oxygen from traveling to your organs.
Mom was placed under a medically induced coma and paralyzed to prevent her from using too much oxygen and to give her body a break from the constant endeavor of fighting for air. The days grew into weeks which turned into months and continued to grow darker each minute for us as we prayed for some improvement.
Mom did not improve even with all the assistance she was supplied. She flat-lined several times and grew weaker with every attempt of help. Various professionals approached us with their thoughts on her case with very little optimism. The holidays were spent with medical predictions of a 2% chance of recovery. Doctors suggested we call out all immediate family members to say their final goodbyes.
As our family began to arrive, physicians slowly scaled back on her medical assistance. As expected she began to further decline at rapid speed. With the grace of God she survived through the night and would continue to fight for her life. After 45 days in a coma and having been medically paralyzed doctors began the process of waking her from a coma with a goal of confirming that she still had full neurological capacity. By the grace of God, the x-rays taken confirmed that she was still there in mind.
The process of waking her out of the coma was a battle. At first, she had no movement or recognition of anyone. Soon after she was able to recognize our faces and voices which was ground-breaking. Our hope increased alongside her increasing motor functions and after months of heartbreak, we finally seemed to have a glimmer of hope. Heartbreak struck once again, she came down with shingles and a few days later, sepsis shock. Two steps toward and ten steps back. Back into a coma and becoming medically paralyzed. We watched silently with our hearts shattered as mom struggled for her life.
Another miracle, mom pushed through the shingles and sepsis shock only to have her ECMO cannulas begin to bleed out at her neck. “Her body is so weak she just can’t handle another surgery”, we were told. We pushed and begged for the cannulas to be fixed. Our options included the following: watch her bleed to death before our eyes or beg for a surgery she may not survive. A double-sided sword to say the least.
We opted for surgery. Her cannulas were moved and scans showed that every last bit of her lungs were destroyed by the shingles and Sepsis. Mom would undoubtedly need a double lung transplant to survive but would not even be considered unless she checked every box on a long list of requirements. Just as we got a peek of the mountain top we slid back down to the bottom now facing another uphill battle.
One of the top items on mom’s transplant consideration list was getting out of bed and walking for a specified distance, unassisted. To able-bodied individuals, this seems easy but she had been in a coma for months and bed-ridden for even longer. She hadn’t stood up in over 3 and a half months when she began physical therapy to strengthen her muscles.
This was an extremely painful process but mom fought through and eventually was able to stand with a great deal of assistance. In the middle of March of this year, she was finally able to get up and walk with little assistance. Bearing the tremendous pain, she continued to walk regularly for several weeks until eventually, she doubled the minimum walking requirement to be eligible for transplant consideration.
Once she undoubtedly met the physical requirements for transplant consideration, the transplant team needed various tests run to see what type of lungs would be a match for her. Here comes another peek at the mountain top. One of the various tests included an antibody count which basically quantifies a patient’s likelihood of rejecting an outside organ. Mom’s antibody count was so high that it gave her a 100% chance of rejecting a new organ which was a hard stop for her transplant consideration at CHI St. Luke’s in TMC.
We began to desperately reach to the best lung transplant hospitals in the nation attempting to get more information on how we can get her to an institution that would be willing to work with this unique patient and case. At the beginning of April, we got a call from UCLA stating they would be willing to take mom as a patient. It would then take us two weeks of battling transportation who demanded $387,000 upfront for transportation and insurance to come to a doable agreement.
On April 19, 2019, mom was transferred to UCLA and is awaiting further tests in hopes of receiving the care she needs to be added to the transplant list. Hopefully, once she does receive the double lung transplant and new heart valve, she will be required to stay close to UCLA for at least a year in order to be close to her medical team in case of any complications.
This is where we stand now. I will try to post a weekly update on my mom and keep everyone informed.
Many of you have asked how you could help my mom. I am humbled to know so many of you care and would like to help. As I’m sure many of you have assumed. PTO’s have been maxed out, jobs have been left, FMLA has been used and some jobs have been lost. 6 months of having a loved one in ICU collides with the reality of the world, careers, bill, etc.
if you would like to help monetarily below you will find information on how to do so.
PayPal: paypal.me/MiriamMerianos or