Well, I'm at UCLA! But NOT in the way I wanted to be.

Instead of getting to move into grad housing as I initially had planned (although this was deferred a few weeks ago), I've been at Ronald Reagan UCLA Medical Center since Wednesday evening-- again, not the tour I wanted.

For the past few weeks that I have had the PICC (peripherally inserted central catheter) line at home, my nurse and I noticed that there has been some drainage from the insertion site. To some degree, this is normal, but once it was consistent more than 6 weeks after placement, the insertion site had gotten larger, and had some irritation, I was told to go into the ER to get the PICC line pulled and replaced with a double lumen Hickman, which I have mentioned before, but is similar to the PICC line, just placed in the chest. I called my doctor first to see if they could get me on the schedule with Interventional Radiology and the community hospital that placed the line. Because I'm a high risk patient, the vascular surgeon refused to operate on me, out of concern of complications.

This meant that we would have to go to UCLA, since my primary care doctor is part of the UCLA network. It is about an hour/hour and 15 minutes away from home. When we got to the ER, it was packed. I am really immunocompromised, so I was wearing my mask and placed into a little cubicle, but the earliest I was able to get a room was after waiting almost 3 hours. I was better off in the cubicle until I got that room, because it was so crowded that they had gurneys lined up 2 x 2 in all of the ER hallways.

I was wheeled into the room, and even with the mask, it STUNK of bleach- they had just poured it on the floor to clean the room. One of my sensitivities is extremely strong smells, so I began to have a reaction to the bleach. They wheeled me out right away, but even the nurses there commented on how strong the smell was. The reaction progressed really quickly, so they grabbed the doctor, who had the nurse grab the epinephrine from the crash cart, and gave me a dose of IV epinephrine. That put a lot of stress on my heart, so I began writhing in pain in my chest and stomach. I got really dizzy, and later found out that my pulse was pretty thready, so they put me in another room that didn't have the bleach smell in the trauma area.

Although I responded to the medications, I continued to react, and still needed more epinephrine. My visit only for issues with my PICC now was turning into an admission for anaphylaxis. I "earned" myself a one way ticket to the MICU (Medical Intensive Care Unit). I was not a happy camper, but knew realistically that even for the PICC line alone, they would probably have to admit me at least overnight, because anybody who could place a new PICC or Hickman was gone for the day.

They started me on IV antibiotics through the PICC line, and accessed the port that is still located in my chest. I also was given the increased steroids for the anaphylaxis, additional Benadryl, epinephrine, oxygen, etc. I have been in the MICU since then, and unfortunately, have still been really reactive. I have had episodes at 4AM 2 days in a row requiring additional epinephrine.

On the bright side, it does not look like there is an infection in my PICC line. It has been 36 hours since my cultures were pulled, and knock on wood, nothing has grown yet. I have not had any fever, but I was told that because I am so immune compromised, I wouldn't necessarily get one. However, my white blood cell count went through the roof, more so than it usually does for steroids. Because of that, they are continuing the IV antibiotics, and trying to make sure there isn't an infection hiding anywhere else.

We are pretty confident that it is just my body undergoing a lot of stress, between the reaction, and the fact that the TPN (IV nutrition) had to be stopped temporarily. TPN is primarily dextrose, or sugar, which can harbor bacteria. Even though we are pretty confident that there is no infection, it isn't worth the risk of spreading any infection. Because of stopping that, and the additional epinephrine , my electrolytes are all out of whack, and I feel pretty terrible from the lack of nutrition. It really shows how much the TPN has been helping me.

Once the cultures have a little more time to "cook" then they will resume the TPN. The current plan is to place the Hickman Monday, and start the TPN through the PICC if we are fully confident there is no infection, or restart the TPN once the Hickman is placed. Once I get the Hickman, they can remove the PICC and the port.

Basically, we are in a "holding pattern" until Monday. This also means that we have to restart the steroid taper, which as always, is frustrating, and of course, that I am not stable enough to start the Rituxan. At least we are getting the Hickman line taken care of while I am here.

UCLA's Medical Center and staff as a whole have certainly been better equipped to handle my needs. Because it is such a major center, they have been able to have rheumatology and allergy/immunology, see me. Although none of the staff are familiar with my conditions beyond the basics, since it is a teaching hospital, they are very willing and able to learn and adapt, which helps a lot. They are really intrigued by my case, which is not an award I want to win, but also means that they are willing to think outside of the box.

Surprise visit from Sasha

Being farther away from home is a little trickier. I am incredibly thankful that Beth, my step mom, stayed bedside the first night, and has visited daily. I also got to have my cousin Maya and Uncle Marc come last night, and brought me some Ben & Jerry's to make up for the TPN calorie loss, and my friend Sasha surprise me by visiting when I thought that she already flew home from Boston! I'm hoping to get out Tuesday, but needless to say, I'm antsy to get out. They brought by a cute Shabbat kit since it is Friday evening. The food here is also REALLY good- not worth being in here for it for sure, but helpful. For dinner last night I got pasta with sun dried tomatoes, black olives, grilled chicken, and goat cheese (not a fan of the goat cheese, but still yum).

Check out this menu! This is one of ten pages.

Another curveball that we will have to deal with upon discharge is that the is currently a national shortage of injectable/IV Benadryl. For someone like me, who literally depends on this medication to stay a live, this is extremely problematic. It isn't clear when this shortage will be resolved. This situation is even more complicated by the fact that I am allergic to the preservatives in some brands of IV Benadryl. I have had issues with some brands before, but use of another brand the other night confirmed that I still have reactions to the preservatives. They have been able to stock it here in the hospital for me, but my outpatient pharmacy is unsure of how much they can get. I'm hoping this shortage is resolved sooner rather than later, because this adds a lot of stress and means that I could have to be re-hospitalized just to get my medications. I am thinking I might try to write to my congress person and the FDA just to add any additional pressure wherever possible.

APP or bust!

Shabbat Shalom!

The calm before the storm!