In March this year I had my one year checkup for my heart surgery. I was so looking forward to getting the stamp of approval from my cardiologist (I still have a hard time saying that) and moving on from the drama of the medical world. That week I had many expensive tests which were all evaluated and sent to my doctor’s office. Then it was my turn to head in there and get the results.
I am in the office, in my little assigned room waiting. The PA comes in, her name is Kim and she is brilliant. She starts out telling me how great my heart looks, how it could not be better and YAY! Then a cloud comes over her face. I have some bad news, she says, sit down.
My knees go weak. I sit.
You have a progressive lung disease.
A what? I say. A what?
It showed up on the CT scan. You have to get it checked out. Her eyes are filling up. This is bad.
I actually fell to my knees. I cried. She put her arms around me and led me out to the front room to get copies of what I needed to move forward. The entire office of workers was looking at me with sad eyes. I am back in hell, I thought. And I had never heard of lung disease, it was as unfamiliar to me as aortic aneurysms. Two smokers diseases for a non-smoker. I had a huge pity party and then started making appointments.
Fast forward. I have spent now three months, one surgery, hundreds of tests and many hours in National Jewish Health, the best respiratory hospital in the country which happens to be in Denver. It has taken over my life, in the same way the heart thing did, only slower in its scariness. After I was sent to the “rare lung disease” department it was decided that I would do a powerful and poisonous set of drugs for two months to see if it would eradicate the hazy grey areas in my left lung that everyone is worried about. I did my research and decided to say yes to this course because though the side effect were brutal, the results were often just short of miraculous. I could imagine this disease being gone.
For two months I took high doses of Prednisone. My glucose tripled and I was diagnosed with diabetes and was given more drugs for that. My eyesight went to totally blurriness and I had an emergency ophthalmologist intervention because of that. I had intestinal distress every single day and gained 20 pounds anyway. My whole body and face swelled up. I felt crazy in the head and could not drive because of my eyes. Anxiety set in and I was given more drugs for that, but did not take them because I already felt so poisoned. I was miserable, totally miserable. My day consisted of what I could see at about 10″ away, so I took up knitting. I could not work or do much of anything.
This entire journey I kept mostly to myself and my close friends. After last year with the heart surgery I was not ready to share again, I paid such a price both professionally and personally. There was a huge outpouring of love also, which was profound and grand, but it scared me to offer my story up and be punished by cancellations and judgements, so I did not. I am now past caring what anyone thinks.
Last week I had the “results” appointment. Went in to the hospital with my loving son, and had a long series of CT scans. We waited and then went into the Rare Lung Disease swinging doors, which will never seem normal to me, and saw the doctor. It was not good news. The prednisone did not work and there was “a significant increase in disease burden”. So, after nine weeks of hell, I was way worse off than I was before.
What I know know is that it is once again a genetic short straw, and that no one quite knows what to do. The best guess is that the heart surgery exacerbated the condition (the intubation gone wrong) and started this surge. I am to go back in three months for more testing.
I am halting all the medications to see if I can actually feel remotely normal again and I am going to Brazil to see my daughter. I have four classes to teach this summer and I am going to do that with all my heart and soul.
15 months of medical hell and very dramatic diagnosis is hard on a person. I am not the same as I was before this. Hopefully I will get back to my physical self feeling better and hopefully there will be a way forward that makes sense.
Here is the good news. I joined a choir and performed on stage for the first time in my life. My friend Melinda picked me up and drove me every week. It was a blast, and something I have up till now not had the bravado to do. I also started playing tennis, which is in the morning and that is my only “good” time. I am a better player than I imagined being, despite being drugged, blurry and sick. I pushed myself and had a great time. I am a much better knitter than I used to be and I have fewer “true” friends than I used to (this kind of year drives away the weak ones) but they are dearer to me than I ever knew. My mother has been my greatest support and who can complain about that?
I have no significant symptoms. Until I do I am going ahead as usual. Have applied for some teaching next summer and like I said, will be teaching for Art Unraveled in Phoenix the first week in August and am super jazzed about my classes, and the week before that I will be teaching “An Intimate Atlas’ in New Mexico at Artifacts Gallery in Farmington.
So I ask you to share a vision with me, that my lungs decided to be “happy” and stay that way. That I begin to heal and thrive. Since the experts have no answers, I figure I can decide on my own and head toward that vision. I ask you to make no judgments on me or others that are ill, because some of us just have the experience of expressing the weaknesses of our ancestors. It is a crap shoot, not a design by God. My God does not want this for me.
The best to all of you. I am taking a break to go and see my girl in Brazil. We intend to make the mighty most of it and I will not let my head even enter the fear place, it will be dreamlike and beachy. When I get back I intend to truly get back to my place in the art world and celebrate my new book, which will be out July 15.
Thank you for sharing this journey with me.