I have been struggling for weeks and weeks now. I had the flu not long after Christmas and it just never completely went away. I have a pain in my chest, a cough, fatigue, and I just run out of air more easily than I should. Seriously. I have trouble talking and breathing at the same time if I come up the stairs at home. This isn’t reasonable. I was having trouble climbing stairs before I got sick, but now things are ridiculous!
This is the joy of life with a serious chronic illness. There are so many little symptoms and problems it is hard to know what’s important and what is just another day of systemic sclerosis. I tend to wait out symptoms for a couple of weeks before I contact a doctor; then I’m at the mercy of waiting for lab results and a call back. Ugh! Things drag on for days and weeks as I process through my medical team asking them to find out what is wrong with me.
For two months I have been bouncing back and forth between my rheumatologist and my internist. My rheumatologist has been concerned that my heart is misbehaving (and sends me on to the internist), and the internist suspects that my lungs are to blame (and refers me back to the rheumatologist). It’s like following a trail of crumbs hunting for answers to an ill-formed question. No test result provided a clear diagnosis.
Except I can’t breathe, and it seems to be getting worse.
Two weeks ago on my way home from my weekly knitting group I was hit with a surge of assertive self-determination. Time to stop acting like a victim, I told myself. Instead of going home I drove for another hour north and requested a full copy of all my medical reports from the hospital where my pulmonary function and echocardiogram tests were done. I knitted on my shawl in the lobby while waiting for the reports, and then took them home with me in my knitting bag.
I am a lucky, lucky woman. I have a molecular biology degree and I once worked in a rheumatology research lab. I taught advanced placement biology for years and I know a lot more anatomy and physiology then the average patient with my condition. I should be able to follow the trail of crumbs within the stack of medical records, I reasoned. I laid out the lab reports in sequence, looked for patterns of change in my lung and heart test results, and took to the internet to understand what strange acronyms meant. I found a presentation that explained pulmonary function tests. Well, dang. Even though the summary notes from the physicians who interpreted my lab test used words like mild, early, and upper range of normal, it was clear to me that my lungs were getting worse over time. Maybe a lot worse.
I emailed my rheumatologist a note telling him that I had picked up up my tests and saw that my results suggested early interstitial lung disease (the summary of the latest test). I reminded him of my symptoms and asked about next steps for me in addressing/diagnosing my ongoing problems. Here’s the deal: an email is part of my official medical record. More than a phone call, it should provoke a response.
Oh, it did! I received a call within an hour from his office. In the next week I had two phone conferences, another echocardiogram, and a referral to a pulmonologist. I was able to refer to specific data in all of my conversations with my doctors. I got a prescription for a badly needed rescue inhaler. Finally! Forward progress!!
Yesterday I saw the pulmonologist. It was a beautiful warm day and a perfect drive through the countryside to get there. What a wonderful, wonderful doctor! She made it clear that I am not over-reacting, I do need better coordination of my health care, and she will be a warrior for me. I wanted to hug her. Here’s what happened during the visit:
I do have interstitial lung disease, and it is serious; almost 20% of my lung volume is already gone. This is bad news because it happened while I was receiving drugs to treat the systemic sclerosis. I will be completing more tests over the next week to nail down the diagnosis, but there is already so much damage that she will coordinate immediately with my rheumatologist about treatment options; she sent him the message while I was still in the office. I think that I will be seeing more/different meds in the near future. I may be going on oxygen overnight. I hope that I don’t have to do IV infusions. I have been referred to palliative care and will be receiving a case manager to help me locate resources and to coordinate my ongoing care with the medical team. I plan to ask the case manager if I should be referred to a scleroderma specialist at the University of Colorado, but I totally want to keep this pulmonologist!!
After so much time trying to get some answers/help the response was actually overwhelming. I came home and for the first time since I was diagnosed I cried.
Today I woke up to a full-blown blizzard; howling wind and almost 2 feet of snow! I didn’t get any calls about medical appointments and I certainly didn’t make any. I knitted, shoveled snow (slowly!) and enjoyed the break from the immediate crisis. I started the next book in my mystery series. I worked some more on my shawl; it is going to be beautiful. My roses are safely enveloped in an insulating three foot drift of snow. I was able to successfully advocate for myself and secure medical treatment. Tomorrow the sun will be back out and I will start scheduling appointments.
This is not the journey that I would have chosen for myself, but I will travel it as well as I can, knitting, reading and tending my roses all the way.
Life is good.