Today marks a week home from the hospital, and I'm so glad to be back. As anticipated, there has been some degree of a learning curve with the TPN at home, and new medication regimens, but so far, nothing that hasn't been remedied. Having nutrition has made a huge difference in post-hospital recovery time. There are some hiccups with transitioning off student health insurance, but we are trying to do what we can to make it as smooth as possible (after some panic). My new home health nurse is great, and is willing to deal with my twenty million questions and insistence upon sterility. I was able to go into work for part of a day so I could avoid taking a medical leave. This was a big relief, and also reassurance that I am passionate about what I do. I am incredibly lucky that my supervisor is extremely patient and accommodating. Even though graduate school is on hold for now, I am confident that trying to work a day or two a week (despite the hellish commute) will help keep me stimulated intellectually. It also gives me an additional sense of purpose as I focus more on spending time doing the things that I want to do and with my family. My little brother, Cody, started middle school this week, and it was really cool to be home to hear about his day.
In terms of health updates, I did my first methotrexate injection on Sunday, which is the low dose chemotherapy as an immunosuppressant. I certainly felt the side effects like nausea and some dizziness, and overall feeling crummy for the rest of the day, which I hope will decrease over time. Nevertheless, it was nothing unbearable, and something that I will do weekly. I also had my next round of IVIG outpatient today, which was the treatment that seemed to have caused the reaction that hospitalized me at the end of July. Thankfully, the small reactions I had were controllable, and I'm back at home resting.
Follow ups with my primary care physician and nephrology earlier in the week were also both largely uneventful. We are working out the logistics of the TPN with my primary care, and the nephrologist just confirmed what we already knew, which was that the autoimmune process is affecting my kidneys, and thus my electrolytes. We hope that the methotrexate, IVIG, and possibly another immune-modulating agent (to attempt once things stabilize more) can maybe help slow things down. I have follow ups next week in San Diego with allergy/immunology and cardiology. I also am supposed to get my new wheelchair tomorrow, which I think will be helpful particularly for work and times that I'm out and about. Still no news on when and if my port swap will be occurring, but the PICC line is driving me nuts based on where they placed it. It's right by the crease of my elbow, so when I bend my arm, the tubing rubs on the inside of my arm. and it pulls on the skin. Although its annoying, I'm lucky that it is fully functional, and as I have said before, the technology and science to be able to receive these treatments in an outpatient setting.
In addition to the two day San Diego trip for follow ups, I am hoping to get away for one night over Labor Day weekend. Going away for any reason ends up becoming quite the orchestration, and often rather stressful, but I think a change of scenery even just for 24 hours is worth a shot.
Tomorrow marks my grandmother Shelley's birthday, who passed away in April. I think it will be tough for all of us, but I know how much she loved all of the family, and would want us to celebrate her. If I'm up to it, maybe I'll try to hunt down one of her favorite desserts, lemon meringue pie :)
I hope that things will continue to be relatively uneventful, but will continue to past updates as they come.
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