Because it is Thanksgiving, the Patient Worthy team asked me to share my thoughts on gratitude. Some among us might think it would be a daunting assignment.
After all, I have a whole shopping cart full of rare diseases that can limit the quality of my daily life.
In addition to being rare, I’m also a wife and mother to two school age children. That gives me the added title of Rare Mom.
In the beginning, I didn’t understand how becoming a Rare Mom was going to provide me with a beautiful new lens to see the world. As my health declined, I was able to see the world in greater focus. To see the beauty in the darkness and to be thankful for every day.
I’m truly thankful for every single day.
I’m grateful for the opportunity to sit down to Thanksgiving dinner this year and see the joy and happiness on my family’s faces. Grateful that I’m here to celebrate family and grateful that I am able to continue my journey as the happiest sick person you will ever meet.
My journey as a Rare Mom began ten years ago this coming January.
My daughter was born in January of 2006. Four short days after her birth, I found myself on a gurney in the ER unable to breathe. I was there thanks to an amazing pulmonologist who I started seeing when I had a terrible cough during the pregnancy. He saw me on a Monday in the office, after a tough Sunday at home. After a quick exam, he sent me to the hospital to get a lung scan. He was concerned that I was exhibiting symptoms of PE. A pulmonary embolism is the medical term for a blood clot(s) in your lungs. When I left the office I was stable; but within a short two hours while I waited my turn to get scanned, I went downhill fast. Thankfully, I was just one floor up from the ER, so that’s where they sent me.
I had tubes, monitors and IV lines everywhere. My lungs were filled with blood clots. When Harvard (my nickname for my pulmonologist) found me in the ER, it was the first of many times I would see my doctor worried about me. I was a hot mess.
So there I was on a gurney in an ER while my mother (Grandma) was home caring for my four day old baby girl and my two and half year old son. Grandma had no formula when I was given the news that I was checking in for several nights at the hospital. I would not be going home to my family.
I would not be going home to my new baby.
I was devastated, scared and angry. Harvard took one look at me, seeing the fear in my eyes, told me to tell him what I was worried about. Holding my hand, I told him with tears in my eyes, I was worried I wouldn’t live to see my baby roll over. I was worried I was going to hemorrhage thanks to just giving birth and all the blood thinners or maybe my “great luck” would continue with one of the clots breaking loose. He looked at me, with such kindness and compassion, and in that moment he broke the fundamental rule every doctor is taught.
He made me a promise.
He told me, “You will see her roll over and more.”
And Harvard has spent the last 10 years keeping that promise.
That experience was the first of many scares, ER visits, scans, blood draws and referrals to world-class specialists. Through thick and thin, Harvard has been the one doctor who has held my hand and never given up. He has guided Jeffrey and I through it all, caring for us both. One of us as his patient and the other as the loving husband of a rare patient wife.
I’ve learned about medicine through the eyes of a man who took seriously his Hippocratic Oath and means it everyday. With Harvard’s help, Jeff and I have been everywhere looking for diagnosticians who could tell us what made me so unique. Hundreds of reports, blood draws and scans later we learned how rare I was. Three rare diseases that don’t go together. The answers have been elusive and at times emotionally and physically painful for all of us.
I think that I may have made him a better doctor, if that is even possible. But, he has definitely taught me how to be a better patient. One of the most difficult conversations, I have ever had was when I told him that I was moving from DC to California. After years of struggling to just get out of bed, NIH had been able to find a cocktail that gave me more good days than bad. While it would never be remission or a cure–I was living my life more fully than I had in years. Moving to California provided me the opportunity to enjoy a climate that would benefit my overall health. While on paper it was a no-brainer, it was scary to leave “my” doctor, the one who knew every cough, every breath. Harvard could tell how bad the pain was just by looking at my face. We had an understanding, a short hand, he knew [why] I was in the office based solely on my cough.
None of the doctors who would come after would ever understand the road that we had covered. They got me at my near best and got to see me live well. We made one deal, that Harvard would always be my primary pulmonologist. Sure, I may have one here in California, but Harvard would always be in the loop. I also promised that I would fly “home” for occasional check-ups, an easy promise to keep.
This year on Thanksgiving, I will continue a long-held tradition. Each year amidst all the preparations for Thanksgiving, I will grab my phone, maybe snap a funny photo and send it to Harvard. Included in the text is a simple phrase.
Thanks for keeping that promise, I’m always thankful for you.”
And with that I will return to my family, lean over and give my husband a kiss and whisper in his ear, “I thanked Harvard…”
And Jeff and I will have that knowing smile, that only one other person in the world will ever understand, and toast each other.