On July 5th, 2015 Melissa "Missy" Sue Brown lost her battle to Cystic Fibrosis.
She left this planet surrounded by her friends and family.
She said to tell you, she is with you at every sunset.Continue to MissyBreathes.com
With CF, mucus becomes thick and sticky.
It builds up in my lungs and blocks my airways, causing coughing fits.
The buildup also makes it easy for bacteria to grow.
This has caused me repeated, serious lung infections.
Over time, these infections have damaged my lungs causing scar tissue.
The nature of the disease effects the mucus secretions in all organs that use mucus including the sinuses.
I've had seven sinus surgeries to correct sinus problems caused by the disease.
Mucus clogs my pancreas, and digestive enzymes are not able to get to the intestine.
So food is not properly digested, particularly fats and proteins. Lack of nutrition prevents normal growth and development.
Unhealthy weight loss and difficulty maintaining weight are common problems for me.
I find myself in the scary position where if I do not get a new set of lungs I will die in the near future.
Thankfully I am a good candidate for a double lung transplant, and I recently did the “work up” for the procedure - a full range of tests and scans used to determine what condition each of my organs are in as well as my blood/tissue type to help match me to the right donor.
In order to be eligible for the transplant I need to be so sick I won’t survive without the procedure, but at the same time healthy enough to survive such a procedure.
I'm on the transplant list and my primary caregiver is living with us.
My primary caregiver is responsible for so many important things before, during and after the transplant, including travel to and from appointments, an understanding and knowledge of all my medications and treatments, paying close attention to my mood and constitution to notice any changes, as well as the care associated with the surgery itself and the recovery. This is not ignoring the simple but vital tasks of shopping and cooking and acting as a friend/part of the support system to help me mentally and physically through something so dramatic.
Once the call comes in that a set of lungs are available I have 4 hours to get to the facility and be immediately prepped for surgery. They will open me up below my ribs, pull down the diaphragm and lift up my rib cage. My current lungs will be detached from the bronchial tubes and the new set sewn on. After surgery I will be moved to the ICU and hooked up to a series of machines designed to do all the jobs my body usually takes care of on its own. It is important that my primary caregiver is present because I will not remember most of what goes on. The transplant team will then begin the process of weening me off of the ventilator over the next 8 hours, before moving me to a “step down unit”.
Because of all the immune system suppressants I'll be on, the riskiest place for me to be after my transplant will be in a hospital, so I will be sent home as soon as possible. My recovery will take anywhere from 6 months to a year. My new lungs will always know they belong to another person and so my body will constantly try to reject them. For this very reason I will have to take multiple immunosupressants and steroids for the rest of my life. My recovery will include visiting the doctors at least 2x a week, physical therapy 2x a week, regular blood work, lung biopsies, and new drug treatments. In the beginning it will be a lot of medical care, but once I become stronger I will be like a normal breathing healthy person.
Full Time Care
Because I'll need full time care, I'm required to have funds available to afford this care.
Even if someone were to volunteer to be my full time aid, I would still need to cover the basic cost of living for this person since they will be dedicating their time to help me - this includes housing, food, and transportation expenses related to my care.
We've estimated this amount of time to be 2 years, which includes 6-12 months leading up to the transplant, and around 12-18 months recovery afterwards.
Based on a general estimate of the cost of living in our area (South San Jose) and what we can estimate in expenses (mainly travel to bi-weekly Dr. appointments) we've landed on a total of: $ 38,000 dollars for 2 years of care.