Andy Provencher’s IgG4-RD Story

What started as a trip to the ER following a bicycling accident quickly turned into a year-long journey to find an accurate diagnosis for an unknown and underlying condition for Andy Provencher.

Andy, whose wife Katharine works as IgG4ward!'s Patient Advocacy Director, discusses his multiple misdiagnoses and how he was finally able to put a name to the disease that left him and his family searching for answers amidst a sea of uncertainty.

"In June of 2020, I had a mountain biking accident. I went over the handlebars, breaking my collarbone and multiple ribs, and puncturing my lung which caused it to collapse. I tried to brush this off, but thankfully my cousin had already contacted the EMTS.

Immediate scans from the ER showed my lungs were plagued with shadows and masses. At the time, I was instructed not to wait on this because it "looked like an aggressive form of cancer." After getting out of the hospital I saw every kind of doctor (so many "-ologists!") I went through a six-month period of receiving many different diagnoses. Diseases and illnesses I had heard of and some I never knew existed. These included: stage 3 or 4 lung cancer, (most likely stage 4 because there was lymph node involvement), Lymphoma, Sarcoidosis, Castleman's Disease, and "some sort of Vasculitis."

With so much unknown, we began the journey to rule out the previously mentioned diseases. While pet scans always showed highlighted activity in my lungs and lymph nodes, a lymph node from a tracheotomy surgery was negative for cancer. However, the doctor wasn't convinced just yet that it was not cancer and wondered if it could be lymphoma.

This amazing surgeon, although baffled by me, never gave up trying to figure it out. He performed lung surgery and removed part of my lung, which was sent out to pathology. Thankfully this went to a superhero hospital to be reviewed by a pathologist there, due to uncertainty from local pathologists.

After this report came back, I was referred to more "ologists" who were also completely baffled by me. One of the new doctors I saw stated, "this looks like cancer and is acting like cancer, so we are going to treat it like cancer."

I was two weeks away from being treated with chemotherapy. Thankfully, I had one more visit with a local rheumatologist who did not think this was cancer and was confident he knew what it was, although he admitted he knew very little about this disease stating, "it is one in a million." (I now know that is not accurate). He referred me to an amazing superhero doctor who he shared was THE expert in this disease.

This doctor and his colleagues put a name to this autoimmune disease about 15 years ago. Coincidentally, the superhero hospital that did the pathology report was where I was referred to.

Prior to our family's summer vacation in 2021, I met this doctor for the first time. He ran some tests and said he would be in touch before I left on vacation. A few days later, I received a voicemail that I still listen to today. The voice message from this superhero doctor played as follows:

"We know what this is, and we know how to treat it."

I was able to breathe a sigh of relief that someone finally knew what was wrong with me. I was then diagnosed with a rare autoimmune disease called IgG4-related disease. I've since started treatment with this doctor and am very hopeful for what's to come.

There was once little known about this disease, and now, thanks to the dedication of others, there is a place to access factual information with the creation of the IgG4ward! Foundation. If you have been diagnosed with IgG4-RD, I understand your struggle. You have my heart and support. I'm very much looking forward to this disease not being a secret any longer.

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Responses

  1. Thank you for sharing your journey, Andy. And also, thank you for sharing Katherine with this fledging organization as Director of Patient Advocacy. She is nothing short of utterly amazing. I’m hopeful that by medical professionals, patients, and caregivers all pulling together, we will make some progress!

  2. Andy… I think we should carve that superhero doctors name in STONE!

    Though I am familiar with your story, when I hear it told and in reading it again here, only one word comes to mind “serendipity!” Though the bike accident was certainly unintended and unfortunate, I am so happy that the injury revealed of the condition of your lungs and ultimately led to disease identification.