Follow Ups... and More Follow Ups

Over the last two weeks, I feel like a lot of what I have been doing is... you guessed it... follow up appointments. I had 2 scheduled follow ups, as I discussed in my last post- one with my allergist/immunologist, and one with cardiology. My step mom, Beth, came with me to keep me company, make sure I didn't over-do it (I unfortunately have a history of doing so), which made for a really nice mini-trip despite all of the appointments!

My Beads of Courage-- they're a little hard to see in this photo, but each bead represents some sort of medical experience/triumph- every black bead, a needle stick, white beads with red hearts, an ICU admission, yellow, a night in the hospital, etc. Unfortunately, they're getting rather long, but a good reminder to find inner strength!

As anticipated, both appointments were pretty uneventful. Both doctors were really happy that I am on the TPN (IV Nutrition), and agreed with the current plan moving forward- to continue keeping my medications primarily IV, including steroids and the TPN, continue IVIG, the methotrexate (low dose chemotherapy injections once a week), and to try Rituxan, which is another immune-modulating drug. This one in particular is considered to be one of the "bigger guns," so I will have the first dose in the hospital, hopefully this Friday. My IV steroid dose is still very slowly being decreased, evidenced by my lovely moon face at the moment! My allergist also assured me that he isn't giving up on me. Although never said he would, probably one of my biggest fears is that the doctors will get frustrated with my situation, so it was nice to have that reassurance. The other suggestion from cardiology was to consider an external vagal nerve stimulator to see if it helps balance out my parasympathetic nervous system. Both appointments were overall encouraging, as there are still things to experiment with. 

I also had an appointment with the Voice Clinic at UC San Diego. Although Vocal Cord Dysfunction has been ruled out multiple times, my doctor still wanted me to check it out to see if they had any additional suggestions. They agreed that I don't have vocal cord dysfunction, but nevertheless were able to show me some tricks to help when I have swelling in my throat to force the vocal cords open. Back home, I also had follow ups with rheumatology, who is going to "run the show" for the Rituxan, and endocrinology, who is monitoring my labs closely. I have the antibodies for Hashimoto's Disease, which means that we are basically waiting to see if/when the autoimmune process starts impacting my thyroid. Catching that early on is best so the thyroid hormones don't get too out of whack.

Since coming home on the TPN, I have gained about 4-5 pounds, which is a good start. I still have a ways to go until their goal weight, but slow and steady weight gain (1-2 lbs a week) is best on the body as it re-adjusts to having nutrition. It also would probably be really physically uncomfortable to gain weight much faster than that. I'm hoping I won't have to be on the TPN for long, but the general consensus amongst my doctors seems to be that they're in no rush to stop it, as it still appears that I'm not absorbing much through my gut, and my electrolytes wouldn't hold without it.

We're still trying to figure out a long term central line solution-- UCLA isn't able to do the double lumen port as originally planned, so their interventional radiology department (IR) suggested having a double Hickman placed where my single port currently is, which is similar to the PICC line I currently have but placed in the chest. The PICC would be removed at that point too, since the Hickman could be used right away. They initially wanted to wait until there was an issue with my PICC, but the PICC is not healing as quickly as it should, which increases the risk for infection. So, at some point over the next couple of weeks, I'll probably have to go through that procedure. 

The goal for this week is for family time early in the week with my dad's birthday and Rosh Hashanah, the Jewish New Year, working two partial days this week, a follow up with my primary care doctor, and on Friday, to do the Rituxan infusion. I am hoping that it is something that I am able to tolerate, and that it is is complication free! And for those of you who observe Rosh Hashanah,  Shanah Tovah!

My new wheelchair came in! It fits me a lot better than my old one, and is far more comfortable. I use it primarily at work and for long distances, and it does the job well.