Donna: My name is Donna and I live just outside of Boston, Massachusetts. I have been married for about 18 years. I have a 17-year-old daughter and I'm a nurse. Before that, I worked with people with disabilities, and I used to run group homes for people with developmental disabilities.
So, it's only been a little over a year that my entire, I guess you would say journey, started. I was just starting to notice that I was having some pain from my stomach area after I was eating. I went for the CAT scan and on the CAT scan report it was not a stone. They noticed that there was like a mass and on the CT report it said it was highly concerning for malignancy, which is cancerous.
And it was just nothing that I was even expecting. You know, I'm thinking it's very simple. It's a stone, you know, they'll blade it'll, you know, work itself out will be fine. I saw the word malignancy and my heart dropped. Long story short, he presented my case to the tumor board at the hospital, which is just a collective of physicians.
And the consensus was that that they really needed to take out the entire kidney and ureter, for a full biopsy. Two weeks later, pathology came back. It was not cancer. And he said it was IgG4-related disease.
SLATE: Immunoglobulin G4-related disease, or IgG4-RD, is a chronic, systemic, inflammatory disease that can affect nearly any, and often multiple, organs of the body.
It is characterized by silent, ongoing organ damage and recurrent disease flares causing accelerated and irreversible damage to previously affected and new organs.
Donna: The challenge with me, as he said, was none of this showed up on any scans to begin with. My urologist were coming to see me. He'd like. So you have no symptoms? You know, like nothing. You have no pain. I don't feel, and I. I couldn't tell you right now that my right kidney is dying.
Like I have no pain. I think it's just having something that's just kind of part of your every day. Now. Like, I think about it a lot. I'm always paying attention to it.
I just realized that for the rest of my life, if something shows up on a scan, I'm going to have to be poked, prodded, biopsied, because no doctor is ever going to say, "I see something there. It's definitely IgG4. It's not cancer."
Looking forward for me is really just focusing on getting my IgG4 into remission.
My first advice would always be go see the people who know the most about this. I'm very lucky that I work in a part of the country, I work in a hospital where we do rare, we do complex all the time. There are a lot of people out there that are struggling with this autoimmune disorder that live in parts of the country that don't have access to that.
It needs to be something that all doctors are aware of, because that's probably not the first person you're going to see in your encounter depending on how you manifest. The focus needs to be for them and for all of us on getting the education out there to other clinicians, other doctors, NPs, PAs, anybody that you come in contact with.
I'm very hopeful and very excited about what's to come. As a nurse, I focus more on the patient, and so it grounded me a little bit more and really appreciated where I was at and, stronger empathy for the people who were on the other side, because I know what they went through. I was just lucky.
Precleared.ca