A miracle happened today, I just do not know what else to call it.
A year ago I was diagnosed with progressive lung disease. I have since had four surgeries, 79 tests and countless days in the hospital. It has been monumentally challenging and depressing, and I felt like I was not safe talking about it, since the year before I paid a great price for my honesty about my heart issue.
So, I have been going to therapy and sharing with very few people. My prognosis has been uncertain, but every single time I had a cat scan the disease had grown. No meds, despite the horrendous side effects, did anything to slow it. It shows up as white opaque areas on the lungs, which should be black. My “white” areas grew and grew. I had to finally realize I was in for an awful life that would eventually kill me.
The hospital I go to is the best pulmonary hospital in the country. They said I had the rarest disease, with the most rare case of that disease they had ever seen. This is not news anyone wants to hear. They did not know what to do with me, and were conferring with a team all across the country.
Then I get a certified letter saying the equipment used in my heart surgery was contaminated during my surgery, with micro bacteria that could cause lung disease. More tests. A call to the Mayo Clinic for a second opinion. The Mayo Clinic refused to see me since that letter was cause to believe there could be a lawsuit. I never mentioned suing anyone, I just wanted a second opinion and they are the only place dealing with rare diseases like mine. They said resoundingly “absolutely not”. I cried and begged, not believing a hospital like this could say this to me. They did not back down.
National Jewish, my hospital, decided to try an experimental drug on me called Cellcept. The side effects took two pages to explain, in very small type. The drug lowers your immune system so I cannot be around sick people, shave my legs (due to excessive bleeding) or feel decent even one day. It scared me, this drug, but they said it was the only chance I had.
In the meantime I started some eastern approaches. Went to a functional neurological chiropractor and acupuncture. My new acupuncturist told me at our last appointment he had been reading about my disease and it was good I lived in a community that offered such good palliative and hospice care. After I told him exactly what I thought of those words being aimed at me, I left, cried for hours, and sought out my previous acupuncturist who said nothing like that.
I have tried to avoid gluten, and sugar. Three days a week I go to yoga class and I meditated at night when I could not sleep.
Yesterday I went back to the hospital for a day of testing to see if the drug was working. The odds were not good, they told me that. My friend Susan took me, I never go alone thanks to my wonderful therapist Katie who insists I rely on my tribe. I woke up, meditated, drank tea, stretched and readied for this definitive day of testing. The news was going to be either really good or really bad. No middle ground.
I asked for spiritual help on Facebook. Hundreds of you responded.
My daughter and I just got back from the doctors. The doctor was befuddled. The cat scan showed the disease was nearly GONE!!! He did not know what to make of it, no one expected that. Where the white areas had been there were foggy places of grey. He said six more months of the meds then I would be done with both the meds and the hospital, in effect, I was CURED!!! Finally, finally I fall on the lucky side of unlikely! (Well, it was actually the second time since my odds of surviving a 9cm aneurysm was 2%). It does not matter what did it, changes in my environment, drugs, eastern medicine, FB prayers. It is a miracle that no one, not even the most experienced doctor there in the rare lung disease department expected. I have one more visit and then I am no longer a member of that club. I have the first great bill of health I have had in two solid years.
Thank you, all of you for your support. Love to you and yours and