What a year (and a half) it has been!
In 2019, I had spent 63 cumulative days inpatient over the previous 11 months. September and November were really bad, with only six weeks in between hospitalizations for lung infections due to my CF. In between each hospitalization, I was on antibiotics almost constantly.
It was September 2019 when my head doctor approached me about lung transplant, and a feeding tube for nutrition. He knew that I had already decided to not go for transplant evaluation, as I knew I would likely be a poor candidate – my mental health was unbalanced, I did not have a strong “transplant support system”, and I had several other health conditions that were too unpredictable.
My lungs/health then in “end stage” – meaning my lung function was at/below 30% despite aggressive treatment – my CF team finally said to me, “we have nothing left to offer you”. Talk about a blow. I was expecting it, but the words hung in the air like a helium balloon. I wasn’t so scared to die, because I knew how it would go.
I worried most about my beloved husband of 20+ years, my furbabies, and my family. I felt so guilty at the fear and worry I put them through, especially Ken, who had been husband, caretaker, cook, driver, nurse/doctor/detective, while working himself into the ground at work, his side hustle, making sure the kitties are okay, and doing just about everything that needed to be done. And he still was at my side 95% of the days I was inpatient.
But towards the end of my admission in November, I DARED to have hope.
By sheer coincidence, a third version of a medication that treats the root dysfunction in the cells of people with CF, had recently been approved by the FDA. However, my insurance had refused several appeals, and told me it would not be until July that they would add it to their list of accepted medications. The problem was that I may not have had 7-8 months left.
But on the day I was discharged – my 48th birthday – I found out through a very high-profile person who worked for the manufacturer of the medication, that they had reached a deal with my insurance, and that I was approved!
I began the medication a week later, and within a few weeks, my lungs improved enough that for the first time in years, death didn’t seem so imminent. It was MY MIRACLE. For three years, I had read books, spoken to priests and therapists, and other patients, and had prepared myself for the end of my life on earth. And now, there was a light at the end of the tunnel…and not THE light.
I also had my third sinus surgery on Valentine’s Day. Not fun, and I was still not too far removed from being in the hospital last.
But I got through it, and healed, just in time for another holiday. Well, another one to miss.
Covid hit, and suddenly, the entire world knew what it was like to have to isolate from loved ones. Not that I want anyone yo have to experience the insane pain and broken hearts we have endured in the past 20 years. But once again, we were alone.
And as quickly as I felt the benefits of my medication, new problems cropped up.
I started having more severe side effects. My doctors played around with the dose, trying to help relieve one or two problems. But one of them – severe joint pain, fevers, stiffness – became so bad that I was back “on the couch” – literally.
It’s been a nutty year. We’re getting cabin fever. But now with the Covid vaccine, life is starting to blossom again. But once again, it’s Easter, and not being fully vaccinated, we are again at home, just the two of us. The last Easter we spent with family was in 2017.
With the Covid vaccine starting to make its way into arms across the world, and numbers of very sick patients trending down, we are watching life slowly unfold again.
Baby Steps, Small Victories
So as we take those first tentative steps toward living again, getting out of the house/yard, learning how to manage flareups and making the most of the time between severe flareups, while still trying to get an idea of the answer, we try anew.
I imagine I will often fall off the horse, trying to operate a body that seems foreign to me, and balance strange new issues I’ve never encountered before just 7 months ago.
I’ve been in the middle of “a medical mystery” before…and either managed the new diagnosis or accepted the dreaded the “we don’t know, the medication is new, we have no answers or treatment for you.”
But maybe as we approach a new phase in the Covid pandemic, and some parts of life reopen, it will be easier to accept if I am mentally and physically “in the world” more. We’re down one vaccine with another 2 ½ weeks to go til #2!
Maybe having more opportunities to be with people, with a different view, will make the other burdens not as scary or as heavy a load.
We shall see where the world places me. I already know what to do with both sunshine and rain!