Diagnosis. This may have been the most used word of these past number of weeks. And here is what I can tell you about mine. My diagnosis is that there is no agreed upon diagnosis.
After being transferred back to the U of A pulmonary unit after the lung biopsy surgery, I was told right away by the lung resident that I would be released shortly. That was late Tuesday evening, and surgery had been on Sunday. I expressed my concerns of being sent home without a diagnosis, there being no treatment plan yet, not to mention the issue of me being unable to actually live on my own at home. I hadn’t walked or showered or even made myself anything to eat on my own for almost two weeks. And I was still on about 5L of oxygen all the time.
Wednesday – still no final report. I asked if I could walk, but was told that Occupational Therapy had to assess me first (this happened the following afternoon and then no one could stop me!). This evening we did start the first intake of the high dose steroid. What was very convenient, is that both of the possible diseases would be treated the same way to start – steroid to reduce the inflammation in my lungs, and as well it is a slight immune suppressant. The idea is for me to take the steroids first and see how my body reacts to them. Ideally, I would see improvement. And then, dependant upon the diagnosis, the second agent, or drug therapy, would be added. Most likely being a more intense immune suppressant to then stop by body from continuing to cause the inflammation by fighting itself when it shouldn’t be. But again, it would depend on whether it was organized pneumonia or vasculitis. So tada! Treatment could at least start, even though no set diagnosis yet. [I plan another post about the drug treatment, because these roids are an entire other update.]
The rheumatologist resident who I really liked, Dr. D, stopped by. He indicated he was doing everything to get the pathologists to finalize their findings from the biopsy, as it was needed for the diagnosis to be made. He shared with me some good news – preliminary results showed signs of it being more likely the organized pneumonia, which isn’t systemic and would have a less intense drug treatment. This gave me a lot of hope. Also, that my blood work did not show the typical patterns that they would expect for a more specific autoimmune vasculitis disease. But at the same time, it was stressed that these are all preliminary findings. Between the lung and rheumatologist updates, I was told that we should have a diagnosis by Friday and be released.
Thursday – still no final report.
Friday – still no final report. I spoke with the lung attending physician whom I also really liked, Dr. K. She said that now I would most likely go home on Monday. I was told that Dr. K also asked the pathologist at the U of A to review the Royal Alex pathology report findings. So that was adding to the time it took to made a final report. Even though this was amazingly frustrating, I did appreciate the teams taking the time to really review and not make a rush decision, as this would affect my diagnosis and treatment plan.
Saturday – nothing. I did ask if the pathologist would even be working over the weekend. I was told they would be… but now more likely going home Tuesday or Wednesday.
Sunday – nothing.
*So in these days of nothing, I had both the lung and rheumatologist residents come see me each day, telling me there was no update. And that was pretty much it. I had began to express my desire to get a diagnosis and go home, as I was now on room air since Saturday morning all the time, even when showering and walking. I had started physio since Thursday and mentally was ready to be home again.*
Monday – still no final report. Ohhhhh, and I should mention that a new month started, so I now have an entire new team of residents and acting physicians. So yes, that means that I now am seeing an entire new team of docs. Dr. K is out and her replacement, Dr. M is in. Plus new lung residents and rheumatolgists. Did I make that clear? ALL BRAND NEW DOCTORS. But I met them all on Monday.
Tuesday – The rheumatologists told me that the Royal Alex pathology results are final! And it shows that I do NOT have vasculitis (yah!) and instead I do have organized pneumonia (kinda ya!). BUT, Dr. K still wanted the U of A pathologist to review the report, as organized pneumonia can appear very similar to vasculitis. It may take a couple more days.
Wednesday – The new lung resident explained that the U of A pathologist had reviewed the report, but now wants the entire team to review it together during rounds at noon. The plan is for me to still go home tomorrow. But the diagnosis needs to be made so the correct followup with specialists and a treatment plan is determined. She mentioned though that most likely I would be following up with rheumatology, so even though she didn’t specifically say it, I knew the good news from yesterday was over. That meant we were back to vasculitis and no longer organized pneumonia. Then the rheumatologists updated me with the same news – meeting at noon, although now they DO think it is vasculitis (as I now suspected). They would confirm with me later that afternoon.
At 4:15pm, the new rheumatologist, Dr. K* (different Dr. K, so I will call her Dr. K*), told me they still think it is vasculitis, but they need to hear from the lung team. Then at 5:00pm, the lung resident returned to tell me that there is still no decision on the diagnosis. The plan is that I will still go home tomorrow, and follow up with both the lung and rheumatology teams in about 4 weeks time. Until then, I am to stay on my steroids and return if I get worse or develop new symptoms.
This was the lowest day I had had since the surgery. I had spent over a week mentally preparing for a diagnosis. Because a diagnosis meant a plan. And I love plans. A decision would be made and we would know how to proceed. But I hadn’t prepared for there not being an agreed upon diagnosis. And the plan to be, “Well, we will see how you feel.” I don’t mean for this to be a dig at the docs, or simplify all of their testing and analysis and knowledge, but after all this build-up, I was extremely disappointed, angry, frustrated and even more scared. I had a few super sad and pity party hours. And then I had something inside me shift. And that can be an entire other post too. What I can say here, is that I went to bed with a refreshed mind set, and was ready for the next day.
Thursday – the lung team came to see me by about 10:00am. We talked about the plan after being released, and I expressed my disappointment and fear of there not really being a plan, due to no diagnosis. I was then told that officially on my discharge they are calling it “Minocyline Induced ANCA Vasculitis”. Ok. So what zee heck does that mean??
Well, minocyline is an antibiotic that years ago I had been prescribed by my dermatologist for my acne. In the past, when I would get a flare up, I would use the antibiotic for about 4-5 days until my skin would settle down, and then stop using it. But earlier this year, I kept getting more severe flareups, so we agreed that I would go on it full time. So I started using the the prescription daily, in hopes that it would be proactive and reduce the more consistent acne I was experiencing. I owe so much to my dearest friend, Trisha. Early in my illness, she was doing her own research. She actually learned about the possible side effects of minocyline and found case studies of it triggering vasculitis. We both thought this was unreal. And I began mentioning this to each new doc that I saw, however this was before I was even admitted on August 20th, and then early into my hospital stay. And although I mentioned it, it wasn’t something anyone focused on. Until I saw Dr. D for the first time. Remember? My fav rheumatologist? He was the first one who brought it up with ME, after I returned to the U of A after the surgery. Which made sense, because his specialty being vasulitis, he was more aware of the potential link. Again, reminding me that there is no way to confirm if this is cause, but it also shouldn’t be ruled out. Well fuck.
And ANCA stands for “anti-neutrophil cytoplasmic antibody”, which is an indicator in your blood work that shows signs of an autoimmune disease, and my blood work is ANCA positive.
So the diagnosis is really something like, “You have some sort of autoimmune disease, but we aren’t sure exactly what, or if anything triggered it, but we are going to go with vasculitis and hope it stays in your lungs.”
So are we still on Thursday? Yes. OK. So then after that chat in the morning, I waited until after 2:30pm for OT to come do my final assessment, and then I needed the official discharge paperwork. So I was finally released by about 4:30pm.
My dad took me to get my prescriptions and a few groceries, and then we got home, ordered pizza, had a beer and watched Law & Order: UK together and I was home for the first night. Again, a whole separate post for that.
So. I think that all makes sense, right?