One of the hardest aspects of recovery after a hospitalization for me is weening off of steroids. The steroids make me feel ok and able to function physically, but long term, the effects of toxicity are not pretty. This is why I have been working so hard with my team to find other "steroid sparing" medications-- this is things like the immunosuppressant (CellCept), oral chemotherapy (Gleevec, which I am non longer on), antihistamines including the IV Benadryl pump, etc. Since starting the CellCept, I generally have been doing better, and after the hospitalization about a month ago, I was able to reduce the steroid dose faster than I am typically able to do. Regardless, each time the steroid dose is dramatically increased while in the hospital, it is rough to decrease the dose-- I get swelling, nausea, fatigue, episodes of anaphylaxis, wheezing, etc. It also makes my face swell with chipmunk cheeks, which I am really self conscious of. They are a mixed bag to say the least.
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| On the "Calm Down" Mom Panel |
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Last weekend, I went with Molly, the friend who was at CHLA with me, to the FARE (Food Allergy Research & Education) Teen Summit in Newport Beach. Although we felt like we were a little old for some of the programming and a little out of place, it was great to network, get off campus, and take some excursions in Orange County. We went to Downtown Disney (which was NOT a pleasant experience-- we were told that 'people with disabilities stand in line all day'), got to find fun food allergy safe foods at Whole Foods, found some safe chocolate at a local candy shop (putting some links at the bottom for anybody interested in our favorite finds!).
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| Sunday afternoon *before* things started not going super fantastic. For individuals with POTS like Molly and I, we are supposed to eat a high salt diet, hence the double shaker action. |
I think both of us may have slightly overestimated our stamina going into the weekend-- by Sunday, we both felt pretty awful. All day Sunday, I was feeling "off" from my latest steroid reduction. I tried everything I could to avoid the hospital-- breathing treatments, running extra IV fluids, taking extra medication when appropriate, etc. By the evening, I started running out of options-- I had already exhausted all of my at home treatments, and still was showing signs of minimal improvement. I called the clinic, and was told that because it was impacting my airway, I needed to go in immediately.
Molly was also not doing well as the result of complications from their POTS and Ehler-Danlos and associated complications, and my team was reluctant to send me to the hospital closest to school because of how poorly they had treated my case in the past. After speaking with both Molly and myself, and because Molly is trained in using EpiPens, we ultimately decided that it would actually be safer to go back to CHLA, to ensure that they would be equipped to handle my care. Molly was going to need to return there in the morning anyways, so the doctor asked us to go out to CHLA ASAP, and that they would call ahead to be anticipating my case. Although this may sound unusual, given the situation, I was better off getting to a place that was equipped to handle my care.
We loaded into an Uber right away with 9 EpiPens-- we felt horrible for that Uber driver! Luckily we only had to use 2, but it was quite a relief when we actually made it to the hospital. In the ER there, the team also tried everything to be able to send me home, but ultimately, it was back to the PICU. They restarted the epinephrine drip and cranked the steroids back up. Molly was also readmitted, but to a general medical/surgical floor. It was weird both being back there again, but I think that it helped both of us stay positive/optimistic to have each other there, particularly for the experiences that were painful both literally and figuratively. Given how crazy it was that we were trying to make it to CHLA, we have officially (jokingly) named ourselves the "hot mess express" (which Molly modified a graphic novel to document).
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| The "hot mess express" book |
I was on the epinephrine drip until Wednesday, so a total of about 3 days. On Tuesday night, the team at CHLA decided to give IVIG a try (part of the reason why it was important to go to a specialty hospital, to be able to try new treatments). IVIG, or intravenous immunoglobulin, is a blood based product made from blood donors, that is a concentrated version of antibodies (this link describes a little more about it). It is typically used for autoimmune disorders or immunodeficiencies. I have an immunodeficiency, but it is not one that IVIG is typically used for. We also suspect that my mast cell may be caused by something autoimmune, but there has not been any confirmation of that yet. While I was inpatient, they decided to give it a shot. Because of my immunodeficiency, I have to receive a special, more highly purified version of IVIG. Since it is a blood product, it is certainly not the most comfortable procedure--- they gave me some premedication ahead of time, like Tylenol, Extra Benadryl, and steroids, but I still had some discomfort. It ran for a little bit over 6 hours. I am appreciative of the CHLA team for taking me on, even though I technically am a little old for the place, until I get a more solid team established closer to my parents house. There were some rough moments this week, and their staff was extremely supportive, and willing to work with my primary mast cell doctor (who also has gone above and beyond).
It will take a few IVIG treatments to determine if it will have a positive effect, but my mast cell doctor collaborated with the CHLA team, and was really happy that they got this started. The fact that I didn't have a negative reaction is at least encouraging that it did not make anything worse. The next hurdle is insurance-- because this is somewhat of an "off-label use," and because IVIG is so expensive, I may not be able to get it covered. We are trying to get it covered for a treatment every few weeks. Each dose of IVIG requires pulling components of donating blood from a few thousand donors, so if you can donate blood, do it!! It is not any sort of directed donation, especially since it is processed significantly to make the IVIG itself, but having a healthy supply of donor blood helps make the treatment more accessible.
On Thursday night, the primary team that was caring for Molly (GI), ultimately decided that it was best for Molly to head back home to DC and be admitted to the Children's Hospital there first thing Friday morning upon landing. Molly is planning on returning in the Spring for the next semester. Of course, I am bummed that Molly had to head back, but I am glad that they have their home team/family/support network there as well. These experiences have been "unique" to say the least, but I am incredibly thankful for their support and friendship.
I was discharged last night, and I am SO thankful that my family now lives closer by. Beth, my step mom, was able to visit me once earlier in the week and pick me up last night. I am not going to lie, I'm feeling pretty crummy today, but it is good to be home. It will also be great to see my dad later this afternoon, who should be landing (any minute) from a business trip to India. Cody wrote a story about me for school, which I absolutely LOVED, and he certainly has a talent for writing! I won't post it here since it is his masterpiece, but you should ask him about it if you're curious....
I am planning on staying here for another night, and hopefully heading back to school tomorrow for classes Monday and Tuesday, and then returning for Thanksgiving. If I don't "bounce back" by tomorrow, then worst comes to worse, I go to school Monday for my home health appointment, and then drive back that evening. Thanksgiving weekend should at least give me a good enough break to be back on my feet a little bit more the following week.
For the rest of the weekend, I am planning on continuing to relax/work/write/etc. I have a bit of recovery ahead of me, but I am trying to remain as optimistic as possible that I can bounce back quickly from this episode as well.
On a happier note, if anybody is curious about some of the fun recommendations from the Food Allergy Conference (not anything promotional, just some favorite finds).....
Cookie Dough Do Bites- these were probably our favorite find, chocolate chip cookie dough that you are SUPPOSED to eat raw, and they are top 8 allergen free! They do have one product with coconut in it, but they take precautions to prevent cross contact.
Sugar Rush Sweet Shoppe- cute family owned candy shop in Irvine. They carry Vermont Nut Free, which makes AMAZING skippers (M&Ms that are nut free) and fudge! You can also order directly from Vermont Nut Free, but since I am on the west coast, it is pretty pricey to ship.
Enjoy Life Foods Chocolate Chip Crunchy Mini Cookies- I have always been a fan of Enjoy Life's mini cookies and chocolate chips especially, but I hadn't had these ones before the conference, and they were pretty delicious!
Spokin- a great app for anybody with food allergies/restrictions/intolerances/etc. You are able to review and read reviews on food products, restaurants, bakeries, doctor's offices, etc.
