A Promise Kept – A Caregiver story
by Nelson Wills
“Take care of Nicole.”
Those are the last words my father in law, Gene Parris, said to me before he passed away at age 57 from a four-month losing battle with Pulmonary Fibrosis. Traumatic and sudden. Gene’s symptoms were an unproductive cough and shortness of breath.
His final words were not a surprise to me. Nicole had recently started showing the same symptoms: coughing and shortness of breath. Her health situation was put on hold as we dealt with Gene’s illness. But I made that promise to him.
Your lungs are not happy
We got to know Gene’s ICU Pulmonologist and set up an appointment for Nicole as soon as we celebrated Gene’s excellent life. Next thing we know, we’re told, “Nicole, your lungs are not happy.”
That was in July of 2014. In June of 2016, Nicole received her sparkling new lungs.
Nicole is now 44 years old. She is as beautiful as ever, a mother to our 13-year-old young man, my wife and a good friend to many. Her smile is infectious. Her faith is impenetrable. We thank her donor for giving her the gift of life all of the time. This gift of “bonus time,” as I call it, is invaluable.
How we got here is another story.
When the train went off the tracks, Nicole and I went to work. We had no margin for error. You know your wife is sick, but you have no plan on how to fight it. What do we do?
Tests. Procedures. Incorrect diagnosis. Clinic visits. More tests. Should we get our affairs in order?
Eventually, Nicole was diagnosed with Idiopathic Pulmonary Fibrosis. What will the disease process be? Inflammation. Scar tissue. Surgery. More bad news. Transplant evaluation.
In reality, everything kept getting worse from the outside, but Nicole and I remained positive that we would find a way out, one way or another. How much time do we have together as a family?
Living in an ICU room with a machine keeping your wife alive. Our 10-year-old son staying with relatives. Our daily deal was for him to have fun and be good. I would take care of Mommy.
A life-saving transplant
A last resort lung transplant at Duke University Medical Center saved Nicole’s life. My emotions were mixed. Someone had to pass for my wife to live.
As a caregiver, you need to have time to decompress. CaringBridge was a godsend for me. It allowed me to focus on Nicole and send updates as time allowed. The little blog that I started became a good emotional outlet for me and the responses gave Nicole hope and comfort with all of the encouragement and prayers we received.
Now the post double lung transplant caregiver phase begins…
Caregiving isn’t for the faint of heart
Post-transplant was the toughest phase for me. Nicole was in a lot of pain, which is to be expected after having your lungs exchanged. With eight chest tubes, she looked like an octopus. During recovery, complications happen. Rejection happens. We battled and made it through each setback. In the moment, you do what you have to do. Looking back, it was a lot.
Nicole was a trooper. I was the cheerleader and the coach. A positive attitude was everything. She started getting her feet back under her with the help of the physical therapy team.
After 3 weeks, Nicole was discharged to outpatient status. We lived in a hotel for the next two and a half months. Close quarters took their toll on our relationship on multiple levels.
It was one thing after another during the recovery phase. As a caregiver, I improvised to best support her as she recovered. At the same time, I worked remotely to maintain my job adding to the complexity of the situation.
Nicole lost 20% of her body weight. A month out, she is losing a pound per day. A new and big complication is now in front of us: the prospect of being readmitted as an inpatient and having a feeding tube inserted to provide critical nutrition. I petitioned her docs to prescribe medical THC. Thankfully, they did and it worked like a charm to boost her appetite. Another crisis averted.
Nicole was discharged as an outpatient right before Labor Day and we made it home just in time for our son’s first day of sixth grade.
Recovery is full of peaks and valleys
The recovery at home was no joke. All of the regimented sterile stuff, medications, not being close to our transplant center. I ran interference on the challenges and supported her as best as I could, as we restarted our new post-transplant lives.
There have been big peaks along the way, but also some dark scary valleys. There is no way to fully prepare yourself…as a caregiver or as a patient. Expect the unexpected but keep pushing and believing.
A miracle received
Nicole has received a miracle. Our son and I have received a miracle of more time with her. Everyone who knows her has received a miracle. She is an inspiration to all of us who are lucky to know her.
I did my best to take care of Nicole.
I kept my promise to her father.
Staying positive is the biggest piece of advice I can offer. Our deepest condolences and eternal gratitude to our organ donor and the family for sharing the ultimate gift of life. Please make sure everyone you know is registered a tissue donor.