PICCing and Choosing My Battles

I am just now realizing it has been 2 months since my last blog update-- whoops. Since my last post, I have been working hard on recovering from my last hospitalization back in May, continuing my work as a Family Resource Coach whenever possible (and loving it), and even got in a VERY much needed vacation!

We left at the end of June for Disney World and a Disney Cruise to celebrate my college graduation and my little brother's fifth grade graduation. My doctor was a little reluctant to let me go because I have been having some electrolyte issues (see boring medical update below if interested), but I was SO thankful that I was able to. I have always loved cruising, particularly Disney, so the opportunity to go on an 11 Day trip on an itinerary that is only offered once a year was too great to pass up. This trip was certainly complicated by more health related logistics from previous trips, like IV medications, pumps, coordinating lab timing, etc., but everything fell into place really well. We flew in two days early to have a "buffer" for shipments and lab work before getting on the ship, and time to adjust to the time change and recuperate from traveling. We got on the ship in Port Canaveral, Florida, spend some time at sea, followed by Aruba (checked out coral reefs in a submarine), Martinique (wheeled around the immediate port area), Barbados (stayed at the in-dock shops), San Juan, Puerto Rico (my personal favorite), and Castaway Cay in the Bahamas (I went to a shore side store then hopped back on the boat), which is Disney's private island.

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The food on the cruise was absolutely amazing, and I certainly would recommend it to anybody with food allergies. Everyone really went above and beyond to find me safe, delicious food so I could indulge like everyone else! Some of my favorites included the top 8 allergen free molten lava cake, a cookies and cream sundae made with Enjoy Life Cookies, Udi's muffins, and Katz brand donuts. I also had the opportunity to meet another young adult with the same conditions as me, which was shocking since the conditions are so rare. I really enjoyed getting to know and spend time with her, and I was also thankful to meet a new friend who "gets it!"

After coming back from the cruise, I also got an opportunity to meet my friend Brittany for the first time in person. Brittany and I have been talking for a couple of years now about our common academic and social interests, in addition to the fact that she is also impacted by the same conditions. We both weren't feeling 110% physically, but we still had an amazing time, and certainly stayed occupied! We figured out how to get into the pool at least up to our waists with central lines, tie dyed hospital blankets to make them more homey, explored the various FroYo shops with allergen friendly options in the area, crafting, and did some baking. The time really flew by, and we are already working on ideas for another meet up!

Now, the health update. Since my last blog post back in May, health wise, things were improving, but very slowly. I have still been having issues with gut/nutrient absorption, and particularly a loss of electrolytes, which can be a problem because a) it makes me feel crummy and b) electrolytes (or a lack there of) can cause cardiac complications as well. After lots of lab work, it appears that there is an autoimmune process (probably a component of the Sjogren's, Hashimoto's whatever) that is going after my kidneys and/or parathyroid that is throwing things off, but we are still waiting for a full interpretation of those results. My GI track seems to be joining the party as well, as my labs look like I am not absorbing my immunosuppressants, which also impacts nutrition. This obviously poses a major issue and complicates treatment.

This past Friday, I had my regularly scheduled IVIG infusion. I was already having some signs of a flare up, but was hoping it would help. This reaction just didn't respond to meds like it should have, so the infusion center sent me to the ER. There, things kind of went down hill, and I ended up in the ICU on an epinephrine drip. They weren't able to get a vein that would hold the additional IV needed for the drip, so it took a whopping 10 tries (which was absolutely miserable) to get an IV that only lasted for a couple of hours. I am still in the ICU, but supposed to be getting moved to the step down unit this evening. I'm a little concerned about how step down will go based upon my last hospitalization in San Diego, but certainly am excited for more privacy and have to give the team here the benefit of the doubt. This is my first time at this hospital close to my parent's new house, and there have been some issues so far (including being served cake with coconut on it), they are trying and have been responsive.

The next morning, they decided to place a PICC line in addition to my port to provide additional reliable IV access without having to dig for veins. I have had them before-- it is a tunneled IV that is placed in my arm and leads to my heart. The current plan is to keep it in place until my single lumen port can be switched to a double, because IVIG, Epinephrine, and another new infused medication the team is hoping to try are not compatible with the Benadryl that is infusing 24/7 through the port. They de-accessed (removed the needle) from my port in the mean time and are using the PICC line instead to reduce the infection risk that would arise from using both the port and PICC at the same time. If my arms heal before they can get me in to place a double lumen  (lines/separate tubes) port instead of my single lumen, then they will pull the PICC line out early. I'm really uncomfortable with the idea of having more than one central line because of the infection risk, but I also understand why it makes sense to keep it in until we have a better back up plan.

What a double lumen port looks like under the skin. My current port only has one clear bubble.

As all hospitalizations are, this stay has been difficult, but even more so because of the length of stay, and honestly, frustration. We know that everything is this autoimmune sh*tstorm, but there really isn't a way to stop it. I am genuinely concerned about what my future holds, and how this disease progression is going to go. There are a whole lot of unknowns and not a whole lot of answers, even from the "best of the best" in the field. I don't know what long term quality of life holds, nor what is going to happen next. It honestly is a horrible position to be in at my age, but at this point, there's also not a whole lot I can do about it. I am sick and tired of being sick and tired, and also frustrated that even when I do everything I am supposed to, things still progress.

This cascade is making me nervous about graduate school. There have been some snags in the process of getting accommodations and field placements sorted out. I am trying to avoid it, but I may need to defer enrollment for a year to get a better handle on things. I have to ultimately make a decision in the next couple of days, so I'll see how things go here, and I'm continuing to speak with disability services to ensure that everything falls into place. On the bright side, my health insurance finally approved my custom ultralight wheelchair. Although we were not able to secure power assist in time, it will be helpful to at least have the chair.

In terms of my hospital jailbreak, it is yet again boiling down to an inability to come off IV steroids. We tried once already to no avail, so we are going to try again tomorrow morning. I have appreciated having some visitors while I have been here, and food that is more edible than what they serve! :P  One new oral medication was started this morning, although I was told it likely won't have much of an effect, and if it does, will take 3-4 months. They may try one other infusion while I am inpatient, which still takes 3-4 weeks to work, but is better than 3-4 months.
We are hoping for discharge later this week, so keep your fingers crossed!