Five years ago I was officially diagnosed with Hypersensitivity Pneumonitis, but prior to that there were 18 months of local medical appointments where I tried to get to the bottom of my continuous coughing and shortness of breath. Every morning I would cough on my way to work, my friend, whom I spoke to daily during my commute, would always ask me about my nagging cough. I would always scoff it off and redirect our conversation back to whatever pressing topics we were covering about our very carefree twenty-something lives. I knew based on my recent appointments that Asthma seemed to be the consensus with my local physicians.  So, I tried countless inhalers to no avail.

At the time I was working on the San Francisco Peninsula, very close to Stanford Hospital, so I decided to self-refer to an Internist there. During my first appointment, she recommended I have a CT scan of my chest. I remember the day I had the scan like it was yesterday. The technician who had been viewing my scan behind the glass window walked into the room and looked at me with a very strange expression. One I will never forget, I should have known right then and there something was off about what she was seeing on my scan. Afterward, the Internist called and referred me to the Lung Clinic immediately.

I went to the appointment at the Lung Clinic with my Mom because I didn’t think it was a big deal and I didn’t want my husband to have to miss work. I went into the office and asked my Mom to wait in the reception area. After the normal vital sign checks, the nurse practitioner came in to review my CT scan and out of nowhere she led off with “You have a  lung disease which causes scarring of the interstitial tissue between your airways, you will probably have to have a double lung transplant at some point, and you will never be able to bear children.” I was completely shocked, I had no idea that this would be the magnitude of the situation. I thought I had asthma! I asked her if I could step out and I went to the waiting area and waved my Mom over. I asked her, through sobs, “Can you come in and listen to this with me?” Of course, she did. The doctor joined us shortly after and apologized for the direct nature of his NP. We then went over the “cause”, something that still haunts us. Have you lived on a farm? Do you have chickens or birds? Do you have mold? Where do you live? A house? A Condo? The list of questions was endless and for the majority the answer was no. I’ve never smoked (anything!) and I never raised birds or spent elongated periods of time in the spa or sauna. I did have down pillows and comforters in my home which we were told to change out immediately. I had our home tested for airborne molds. The answer remains a mystery, somewhere along the line I inhaled something that has led me down this path.

So, I had a lung biopsy and the diagnosis was confirmed, Idiopathic Hypersensitivity Pneumonitis.

And then, the drug combinations began. Prednisone and CellCept in various dosages for the first couple years (I will discuss the joys of Prednisone in another post because that drug deserves its own write up!) I was also prescribed supplemental oxygen at home and at work, which I never used because I was WAY too vein to consider it, and, at the time, didn’t require it regularly. Things went on this way for a while and nothing seemed to be changing except my lung function was slowly deteriorating and the drugs were not helping. I kind of went on living “normally”and pretended I wasn’t sick. For the most part I could operate in the same ways I had been before finding out. Things went on this way for the next few years.