It’s official, I now hold a Bachelor of the Arts degree in Psychology and Sociology from Pitzer College! I still can’t believe I’m done. I have to admit I have been neglecting the blog a bit, but things have been quite the whirlwind since April when I began working at Children’s Hospital Los Angeles (CHLA), which has been amazing so far! Between final papers, orientation, and wrapping up my college career, time has flown by. Nevertheless, I managed to graduate with a 3.83 GPA (technically a semester early), which (selfishly) I am proud of. I also made my decision for graduate school…… I will be attending UCLA starting at the beginning of September to pursue my Master’s in Social Work (MSW).
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| (Photo Creds to Andrea) |
I wish I could say that everything has been rainbows and butterflies, but I think there is a consensus that those sorts of expectations are unrealistic. In the early hours April 21st, my grandmother, Shelley Balonick Davis, passed away after a health decline that ended up taking a more rapid turn for the worst. This was a devastating loss for the entire family and quite frankly, most people who knew her. I thankfully was able to spend the last couple of hours with her in the Bay Area. While we were in the Bay Area, a few of her nature pals were hanging out around their house. Probably a coincidence, but I’ll take it as a sign that she was checking in on us. Despite this loss, and certainly far from ideal timing, I know that my grandmother would have been so proud of me for my academic, career and personal endeavors, and was at my graduation (and all of our recent happenings) in spirit.
At the funeral, I got a voicemail that I was able to get an appointment with a physician at Mayo Clinic in Arizona that specializes in using IVIG for dysautonomia (POTS/Postural Orthostatic Tachycardia), Mast Cell, etc. I had been waiting for 2 years to get in, so I can’t help but think that maybe there was a little message from Grandma hidden in there. The appointment went really well, and he had some suggestions on how to better fine tune my medication regimen. He also asked me to repeat all of my autoimmune antibody panels. These have been repeated a few times, but he said he wouldn’t be surprised if they started showing up positive at some point.
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| Met Erica of Celiac and the Beast at the airport waiting for my flight that was 4 hours delayed to Arizona! |
Sure enough, this round of labs now showed autoimmune antibodies for Sjogren’s Syndrome and that I appear to be developing Hashimoto’s Disease. These are both autoimmune conditions which can explain why my POTS and Mast Cell Activation Syndrome (MCAS), particularly when combined with Ehler Danlos Syndrome. I never thought it would be a good thing to add yet another term to the ongoing diagnosis list, but it does help explain my symptoms and why they respond to the meds they do. It doesn’t change treatment much either, but again, can maybe shed some light on new developments in the future.
Graduation was shortly thereafter, and also a really positive and celebratory experience. I was a little nervous about the logistics of standing and waiting in line, etc, but I am very appreciative that Pitzer staff as well as friends and family made things work. I was also really appreciative for everyone who came out to support me from near and far. It meant a lot to me, and I was so happy to be able to catch up!
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| Celebrating Mother's Day.... |
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| Celebrating Serena's birthday.. |
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| Reuniting from near and far! |
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| Thankful for the love and support for these awesome deans! |
On Tuesday, I drove down to San Diego with two friends from school and part of my POTS “crew” for outpatient follow up appointments. We went to dinner when we got into town, and I seemed to have a reaction to a muffin—despite the fact that it at least was not supposed to have anything I can’t eat in it. I used my EpiPen and other emergency meds, but I felt a fluttering in my chest that I have had before, but typically isn’t a super fantastic thing. That component resolved pretty quickly, but I was still reacting, so my friends took me to the ER. I absolutely avoid the ER/hospital at any and all costs, so I refused to get out of the car for about 40 minutes. Eventually I reluctantly agreed to go in, but only for a dose of steroids, then go home.
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| At least Molly and Serena were having fun in the ER? |
Unfortunately, that didn’t go as planned either. By the time I went in, it was kind of to the “point of no return.” I was admitted to the ICU for observation. I began to improve, so I was transferred to the Telemetry/ICU stepdown floor. When I got there, there was a series of unfortunate miscommunications and challenges. I wasn’t able to get my emergency medications as quickly as I needed them. When I need the meds, I need them almost immediately before things begin to spiral. There were also 2 vital sign checks missed, a breathing treatment, and 1-2 doses of my immunosuppressant.
I can’t even begin to say how fortunate and lucky that two of my friends, Savannah and Molly, were with me in that room. They noticed all afternoon that things were declining, and asked for a re-evaluation, but they were told that someone would be coming soon, or it was the middle of shift change.
By the time the appropriate team did arrive, I desperately needed epinephrine. My memory from there is more foggy, but from all of the accounts, the doctor asked for Epi. We had already used the EpiPen next to my bed, so the nurse tried to call down to the pharmacy to get another. The nurse stated that she didn’t know that the crash cart down the hall contained epinephrine, which is a MAJOR issue, because that is considered to be standard knowledge in any healthcare environment. I was turning blue at this point, so the doctor, Molly and Savannah used Molly and Savannah’s EpiPens. Those thankfully worked, and I was transferred back to ICU, but most certainly in worse shape than when I arrived.
I was told that if Molly and Savannah had not been there or had their EpiPens, I literally would have died, because there was no crash cart in the room. Even if there was, I didn’t have enough of an airway, which would have meant they would have to attempt a surgical one (but that equipment wasn’t there either). Molly, Savannah and the rapid response physician undoubtedly saved my life.
To avoid these incidents in the future, the hospital is conducting a thorough investigation, including re-training, documentation, stocking more epinephrine autoinjectors, etc. Many managers, supervisors, etc. have come by to debrief. I am at the hospital where my specialty care team is in La Jolla, which has helped facilitate communication as well.
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| My dad has customized the info board in my room to be jailbreak themed. |
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| Delicious looking dinner, am I right? |
Since then, things have been improving, but I have now been in the ICU for more than a week. The physicians and staff have all been fantastic, with the exception of that one floor. We are making progress- I got an extra dose of IVIG, we doubled my immunosuppressants, and increased the rate of my continuous infusion. We are hoping to get out of here tomorrow, but it may have to be Saturday. I have been blessed to have had lots of awesome visitors while in San Diego (shoutouts to Kara, Gabriela, Julie, Savannah, Madison, Molly, Serena, Willa, Aviva) and my dad has been bedside since the incident last week. Nevertheless, it is still frustrating, and disappointing. I am so thankful for the progress that I have made over the last year—I finally have my life back. And this one hospitalization does NOT jeopardize this progress by any means. I just have to remind myself that slow and steady wins the race. All that is left is the final push to oral steroids (instead of IV). I am also VERY excited to have non-hospital kibble (the food being nasty is a dramatic understatement).
I’ll keep posting any updates as I have them but hope to jailbreak soon!
Last, but finally not least, I will be fundraising for the Denim Dash this summer, which is a virtual 5K for rare disease awareness. It allows me to fundraise for a cause that is near and dear to my heart (and I can walk/roll, bowl/whatever): https://www.crowdrise.com/o/en/campaign/the-mast-cell-crew
