By the time I saw the infectious disease doctor the next day, I was feeling pretty lousy. The fever, nausea and general malaise (this is the medical term for feeling yucky) was pretty much how I was living my day to day. I knew that my pancytopenia was back because my urine looked awful (the worse my counts were, the darker the urine)- but hey according to all known medical testing, I did not have cancer or an infection.
An infectious disease work up – when you don’t know whether or not you have an infection – is crazy huge. And I being a healthcare provider in an urgentcare I did not have a simple answer for questions like, “have you ever been exposed to TB?” “Well- Maybe.” Inconclusive results haunted my medical chart. It was very frustrating. The infectious disease doctor combed through my medical chart and did find two things of note. My blastomycosis panel was ever so slightly positive and my Epstein Barr virus panel (mono) was also positive. These two findings carry some significance as our story continues.
Blastomycosis is a fungus indigenous to my region of the country; most individuals who live here will have a positive marker for this infection, but never develop any disease. All-in-all your immune system should take care of it, but on occasion (especially if you are immunocompromised) you can develop a pneumonia from it. It can be a tricky little fungus because it can take months to show up as a positive finding on a lab report and it can take several additional weeks to grow positive culture. Now I am not what you would call a real “outdoorsy” kind of person. BUT I am cheap. Earlier in November I had decided that a holly bush in my yard needed to go- what better pinterest thing to do than to take that holly bush, cut it up and use it in holiday decorations! I figured I had basically inoculated myself with the fungus while making those decorations! In addition to this, the Epstein Barr panel was also positive for a past infection. I knew that I had never had mono as a young adult, but could have possibly had it recently (I saw about 4 cases of mono at our urgent care). BINGO- I had solved the mysterious illness! But honestly I should have responded to treatment better and I was still very ill. The infectious disease doctor I saw that day did agree that my scenario was plausbile, but I just did not have the labs to support it. I was sick as a dog that day- she felt it would be better to admit me and do another complete work up. I was all game for this because my fevers were coming back and I felt awful.
I am not a spring chicken anymore. I am not old, but I am getting to the age that people who are newly practicing providers are considerably younger than I am. They are so bright and eager and invigorating to work with. And I had a wonderful group of new interns and residents to work with when I was admitted to Vanderbilt. They were determined to figure out my diagnosis in an expedited manner and save me from my misery. Ah, the naïveté of youth. And so the work-up began all over again. And the fevers were getting worse. The great thing about having medical students is that they want to talk about all of the differentials. And they are excited to hear your case. Seriously, never turn down the opportunity to work with a medical student. What they lack in experience, they make up with in enthusiasm and book knowledge. And right now, many of my differentials only existed in books.
The week wore on. Lots of testing, very little new information . One thing was certain, it was looking more and more like I was going to need my spleen removed. We had tried to save it, but it was sequestering (gobbling) cells as fast as I was making them. And there was a strong possibility that they could diagnose me, if we could use the tissue from the spleen. How I hated to part with it though! I was kind of attached. But we had started the process of preparing me to lose the spleen even upon my very first hospitalization (essentially your spleen is a very large lymph node- part of your immune system. You can live without it, but you need to be fully immunized. I am afraid that I will never travel to sub-saharan Africa and such because I don’t have my full immune system, but other than that it is an easy organ to part with). I would just sit in my room and sweat. Especially at night. When your fever is that high, your heart races and your blood pressure is high, you ache and well….fevers make you miserable and fevers for days, well more miserable. AND at some point they cut my tylenol dose (stay tuned-next post!) so I was getting less relief from the medications than I had been. In addition to this, they had given me an immunization earlier in the day. Up till this point I had very little pain, but let me tell you, I cannot imagine my arm hurting much more than if it had been broken. It was hugely swollen and I could not move it in any direction. Red and hot and painful. Hope is medication for the miserable. I had spent hours upon days trying to see the hope, trying to believe in the process and trying to find God in all of this.
It was raining and dark that night. The whole night-I was up for all of it. I was in pain. I was wore to the bone with fever and I was alone. I sat there looking out the 8th floor window and I cried. These were not my first tears. But I was so desolate, so anxious, scared and once again alone. I felt that no one could possibly understand. Right then, in that moment, I knew that someone had. I thought about Jesus and his walk up Mt. Calvary. His crucifixion. The pain, the fear, asking his father to give him strength. I knew that I was not alone, and that I never had been.