Tuesday was a follow-up appointment with JP Doctor. I still have visible swelling in some of my joints, but they are much better than they were when I first got out of the hospital this summer. Overall, she is pleased with my steroid level - it's a lot more than I should need for just replacement doses, but the amount I'm on seems to help me stay functional. Whether the roids help from an adrenal standpoint, a POTS standpoint, or an arthritis/autoimmune standpoint, I don't know, but it's working! JP Doctor also got to hear the whole story of my hospital visit! She thinks that I had the SIRS as a result of my autoimmune issues - my immune system wildly overreacted to what should have been a "normal" illness. The conundrum seems to be: I take methotrexate and steroids to suppress my immune system in an attempt to keep my body from attacking itself. Unfortunately, it seems that at my dosage, I'm immunocompromised enough that I'm susceptible to getting sick, but not suppressed enough to prevent the SIRS from happening when I get sick. So basically, I'm suffering all the downsides of suppressing my immune system...without reaping any of the benefits. JP Doctor wants me to resume methotrexate at a higher dosage just as soon as possible once I'm off antibiotics, as she believes that my immune system is still dangerously hyperactive.
I noticed my arm was feeling more swollen, and it occurred to me that this was the arm that hosted the PICC line. I showed JP Doctor my arm, and mentioned that I thought I should probably get a sonogram of my arm to make sure I didn't have a blood clot. She joked that she should just give me my own prescription pad, since I seem to know what I need. She agreed that the test would definitely be a good idea, just to be safe, so I left with an order for a sonogram. I was to find an imaging place in my area that would do the test.
As I exited the car upon arriving home, however, that timeline changed. I noticed that my right arm was very heavy. Looking down, I barely recognized the huge, purple, numb limb. My mom and I grabbed a few things from around the house and did a quick about-face and drove to the ER. I was put at the top of the list at triage, and was taken back pretty quickly - I guess loss of limb is pretty high on the priority list.
I was terribly disappointed to have to return to the hospital less than 24 hours after being discharged! And it felt so weird to be in the ER and NOT feel terribly sick or in terrible pain - I've always been so out of it in the ER! An ultrasound confirmed that I did, indeed, have a large blood clot in my right upper arm. The PA said that the PICC line was more than likely the cause of this clot. He asked if I was in pain - the arm did hurt some, but not much - and he diagnosed what I had assumed was a bad crick in my neck as referred pain from the clot. He said that I'd follow up with Dr. D, the internist who took care of me during my last hospitalization. Dr. D would start me on anticoagulant shots, and then move to an oral anticoagulant. I started to ask a few questions, and the PA kept saying that he wasn't sure, but Dr. D would answer that. I asked, "Is that it? So I just leave now, and make an appointment with Dr. D?"
The PA frowned and said, "Oh, no, you aren't going anywhere - you have to be admitted here for several days."
At first, I thought he was joking... he wasn't. I could feel the tears welling up in my eyes. I started rambling... asked if I HAD to be admitted - I JUST got out of the hospital... how long would I have to be in the hospital... did I HAVE to be admitted? Was there any way I could just go home?
He apologized and said that it just wasn't safe for me to be walking around out of the hospital until my blood levels reflected an adequate level of anticoagulant. Once you form one clot, it is very likely that you will form another one, or that the current clot will continue to grow. Also, there is a small chance of part of the clot breaking up and going to the lungs or the brain, which is very, very serious. It is standard for people with clots this big to stay in the hospital for several days, where they are monitored very closely. He left to get the papers in order and find a room for me.
I started trying to call to cancel some previous engagements, but I had no reception in the room. I wandered the halls for a bit without success, and finally ended up back in the ER lobby to make the calls. After a few minutes, my nurse emerged. "THERE you are! Everyone's looking for you so you can give yourself a shot so they can send you home!"
I thought he was joking with me, and said, "You're just saying that to lure me back to the ER - you're scared I'm going to run away!" He said, "No, really, they decided to send you home, you just have to give yourself a shot first." I kept asking why, but he wouldn't give me a straight answer, so I wasn't sure if I should believe him or not. As I got back in my room, my mom confirmed that I was going to go home, but she didn't know any details, either.
The nurse brought in the anticoagulant, and said that I had to demonstrate that I could properly give myself an injection. By God's providence, I've not only received this shot daily after each of my surgeries, but I had also administered this particular injection to many patients when I was a nursing student! Lemme tell ya, it's more blessed to give than to receive. That stuff stings like a bee.
After demonstrating my proficiency, the doctor and PA came in. They said that upon speaking with Dr. D, he said that he felt I could take care of myself at home, as long as I could self-inject the med and promised to follow up with a doctor within 24 hours. At that point, I would have agreed to inject myself in the eye if that meant I could go home! Dr. D, you are a champ!
So, after an exciting day, I found myself more thankful than ever to say good night to MY family, slip under MY covers in MY room in MY lovely home... without the beeping of machines, the hassle of tubes and wires, the interruptions of nurses and techs and doctors... After going home, back again, and home again, I feel that I can say with confidence:
There's no place like home.