Hospital Frustrations

My plans had a wrench thrown in them this week when, after feeling a little under the weather for a couple days, I came down with a 100.2 temperature on Tuesday. For most people (and for me up until a year ago), a 100.2 temperature means they pop a Tylenol and take a nap. For me, it requires getting admitted to the hospital. One misconception many people have about me is that when I get admitted to the hospital, I must be really sick; however, in my four hospital admissions since my transplant, this has never been the case. Unfortunately, the combination of me taking immuno-suppressant medications, being 128 days post-transplant, and having a central line (Hickman catheter that’s like a permanent IV planted under my skin), makes me extremely susceptible to rapidly spreading infections and requires extra caution regarding fevers. Zack and I avoid telling most people when I get admitted because we don’t want people to assume that I’m doing badly.

Good news first: this hospital stay was my shortest yet! I got discharged today after a little over 48 hours, which is the minimum required for a fever-related hospital admission. As soon as I get admitted, they draw blood cultures, and if those cultures come back negative and I haven’t had any fevers for 48 hours, I can be discharged.

The reason my post is entitled “Hospital Frustrations” is that with each admission, I feel more and more like I’m being treated like a child with no control over my own schedule, body, medications, and the like. The hospital’s regulations at times border on the absurd. When checking my medications upon admission and finding that I take Viactiv calcium chews, the nurse was required to confiscate them and get them checked and labeled by the pharmacy before I was allowed to take any, which took (no joke) about 5 hours. Feeling like I was undergoing a drug bust, I laughingly handed over the calcium. I have no idea where the order came from, but the very next day, my nurse informed me that she needed to again confiscate my chews to get them re-checked by pharmacy. What did they think, that I snuck some crack in my Viactiv chews overnight? That in the 12 hours since being thoroughly examined by a pharmacist, the calcium had somehow morphed into a forbidden substance?

Another prime example of absurd regulations is my inability to check my blood sugar and administer my own insulin while in the hospital. As I mentioned in an earlier blog post, the steroids I’ve been on since transplant have elevated my blood sugar to the point that I’ve needed insulin to regulate it through the use of Lantus and Humalog insulin “pens” (needles), which I’ve been doing for the past several months. Because my blood sugar issue is related to steroids and not diabetes, it often doesn’t follow a set pattern or ratio and requires a lot of understanding of my body and blood sugar pattern over time. When I’m in the hospital, however, they not only confiscate my pens and blood sugar monitor, but they require me to check my blood sugar using their machine and have a nurse present when I administer each shot. Before each meal and before bedtime, I have to page the nurse and wait for her to gather all my supplies, check my sugar, and check my insulin dose before I can even administer my shot and eat. During this hospital stay, this process took, on average, about 40 minutes each time.

To close, I’d like to quote two men known far and wide for their integrity, virtue, and wisdom. *Abraham Lincoln once said, “If you don’t return my Humalog pen, I will attack you with the North.” **Or, in the words of Mel Gibson, “GIVE ME BACK MY [PEN]!”

*Disclaimer: you must be a true fan of The Office to understand this humor.
**True movie buffs, my husband being one of them, will known the source of this quote.

Old Lady Bones

A few days ago, I saw an endocrinologist and was diagnosed with osteoporosis. Osteoporosis. At 26! I apologize if I’m offending anyone, but I’ve always thought of that as the old lady disease that Sally Field does commercials for. I’m always like, “Hey! The actress from Mrs. Doubtfire!” (such a good movie by the way). If you’re unfamiliar with the term, osteoporosis is basically weak bones and usually affects post-menopausal women, mainly women in their 50s and beyond. However, as a result of prolonged steroid use to treat my various conditions over the past year and a half, I’ve developed the condition at 26 years old, and it’s caused me to develop two compression fractures and bone demineralization.

I was talking with some friends tonight about how much I hate feeling/being so weak. Like, I really hate it. A lot. Struggling to walk up stairs or needing assistance to get into a car feels like a failure and an embarrassment to me, someone who’s always prided herself on being athletic and fully capable of taking care of herself, but that’s the reality of where I’m at right now. A friend texted me a scripture yesterday that really reassured and encouraged me in the midst of all these potentially discouraging circumstances:

Psalm 41:1-3 NIRV
1 Blessed is the one who cares about weak people.
When he is in trouble, the Lord saves him.
2 The Lord will guard him and keep him alive.
He will bless him in the land.
He won't hand him over to the wishes of his enemies.
3 The Lord will take care of him when he is lying sick in bed.
He will make him well again.

Though some of the side effects my body is suffering from are more permanent than others, God has already made me well in so many ways and will continue to heal me. Plus, the Bible is filled with examples of God using people’s weaknesses to do great things or to help them and others grow in incredible ways. So I’m going to try to face my weaknesses and not hold back from asking people for help, while also believing that God will heal me and I will be able to do many of the things I can’t do now. Feels a bit daunting, especially for a classic type-A personality perfectionist such as myself, but check out this scripture:

Luke 10:27 MSG
27Jesus was blunt: "No chance at all if you think you can pull it off by yourself. Every chance in the world if you let God do it."

Zack and Becky and the Quest for the Holy Ruffles

Have you ever plugged your nose while swallowing a nasty medication? I have more times than I care to count. Why do you plug your nose? Because it prevents you from smelling the medicine, and smell accounts for most of our taste.

Now imagine plugging your nose every time you eat. That’s basically what my experience has been with food for the past month. My taste buds have been dull ever since the transplant, but for some reason still unknown to me and my doctors, my senses of taste and smell have almost completely disappeared over the last several weeks. We originally thought the loss of taste and smell was a result of nasal congestion, but it’s persisted through four different allergy meds and Flonase and is the same whether I’m congested or not. What’s strange is that I can tell if something is spicy, tart, sweet, or salty, but I can’t taste it; the actual flavor is non-existent. Needless to say, as a lover of fine foods, this experience has been quite frustrating or me! :(

A few random things still offer a tiny bit of flavor to my defective taste buds, including chili, oranges, coffee, cherry frozen yogurt, tomato sauce, and...Loaded Chili & Cheese Ruffles. So a couple nights ago, after making some delicious enchiladas (how would I know, right?) and not being able to taste them, I was a little depressed. Zack decided to cheer me up by taking me to our local “Stop & Save” Liquor Store (I love these liquor store names...because of course we all know people go there for the savings) to stock up on food we knew I could somewhat taste, beginning with the infamous Loaded Chili & Cheese Ruffles. We scoured the aisles on the “Quest for the Holy Ruffles” and left with not only the Ruffles, but some Pizza Supreme Doritos and, our healthy choice for the evening, Garden Tomato & Basil Lays. I guess it’s bad when your “healthy” choice is a bag of potato chips.

We are actively trying to determine the cause of this loss of smell and taste, and I believe that it will improve (hopefully sooner rather than later!), but in the meantime, I’m trying to enjoy the texture of food and then use my brain to recall what it should taste like. So if my brownies taste a little off, I take no responsibility.

Dollar Tree Treasures

For all you cynics out there who think you’re too good for the dollar store, it’s time to get off your high horses and prepare to have your minds expanded. If you haven’t been to the Dollar Tree lately, it’s a whole new world! I’ve always been a lover of garage sales, flea markets, street fairs, and other places you can find things that are quirky, random, and, well, cheap. The dollar store is one of these places. Admittedly, some dollar stores fit the stereotype to a T, offering goods like plastic costume jewelry, dented cans, defective toys, and fake Cheerios with names like "Happy-Os." But on a recent trip to the Dollar Tree with friends, we found ourselves gasping as we walked down each aisle, discovering treasure upon treasure neatly displayed on its shelves.

In the food department, this prime establishment now offers feta cheese, sourdough bread, red wine vinegar, teriyaki sauce, premium salad dressings, frozen sweet potato fries, and frozen soft pretzels, all of which you would pay at least three times as much for at your regular grocery store. Granted, you need to check the labels, because they definitely also sell quite a bit of the preservative-filled, sodium-laden, what-the-heck-ingredient-is-that type of food. But for someone who cares about her health and considers her food standards to be relatively high, they offer an impressive assortment of nutritious cuisine for a very low price. Still need convincing? My local Dollar Tree has an expansive selection of high-quality greeting cards, kitchen supplies, books, and health supplies. I’ve bought everything from beanies and microfiber towels to scrapbook supplies and sunscreen there, and, with the occasional exception (double-sided tape wasn’t so double-sided...), everything has proven to be surprisingly durable and reliable.

My one complaint about Dollar Tree? They are majorly understaffed. Only two lines open at 12 pm on a Saturday? Come on, now. Sparing me from the germ-infested crowd that formed the massive line at the store this past Saturday, Zack selflessly stood in line for about 20 minutes while I strolled throughout the aisles, trying to control my excitement and not run back to him with my arms filled with more treasures. I have to pace myself; I’ll save those for next time ;).

The [cord] that broke the camel’s back

So let me just get the bad news out of the way and tell you that I got admitted to the hospital again this week. Unfortunately, four-day admissions, which the BMT team considers short but feel to me like a million years, seem to be my thing :/. The culprit? An E. coli infection, which coincidentally is the same bacteria that sent me to the hospital in April. Uttering the phrase “E. coli” always tends to get me some pretty frightened looks, but in my immuno-suppressed condition, I present with symptoms long before the scary and more dangerous symptoms of E. coli infections would typically arise. Though it’s frustrating to be so susceptible to these type of infections, I’m glad that we were able to catch them and start IV antibiotics quickly, preventing worse symptoms and a much longer hospital stay.

Claustrophobia: extreme or irrational fear of confined places.

I appreciate how claustrophobia is defined as “extreme OR irrational fear,” because my experience with this feeling this week was, in my opinion, VERY rational. For the past couple weeks, my doctors have been debating over the best course of treatment for a platelet condition I developed. One potential treatment required two 8-hour infusions, so since I was stuck in the hospital anyway for, well, longer than 16 hours, they decided to administer the treatment.

Here’s where the claustrophobia comes in. During the 8-hour infusions, I had to be hooked up to an IV pole through both my lumens (fancy word for the caps of my Hickman catheter), connected to a monitor through 3 cords attached to my chest, and attached to an oxygen saturation machine (O2 sat) through an adhesive wrapped around my finger. In case you weren’t counting, that’s 6 cords and 3 machines, each with its own uniquely endearing alarm system. I could literally move 3 feet, and simply breathing too hard would set off a series of beeps. The phrase “I’m beeping” quickly became part of my everyday vernacular. Going to the bathroom required several minutes of creative thought and preparation, including silencing multiple alarms, untangling and detaching myself from 4 of my 6 cords, and maneuvering the IV pole around a massively long extension cord to create a clear path from the bed to the bathroom. And they wonder why dehydration is an issue in the hospital.

The good news is that, in addition to not taking a swing at anyone during those 16 hours (a miracle, I assure you), I’m home now and doing well! I’m hoping and praying for no more hospital admissions, as I know many of you are as well. Thank you for your continued prayers, support, and encouragement :).

Day 100!

Though not as dramatic as Mel Gibson’s (or should I say William Wallace’s) garbled cry of “Freedom!” in his dying breath in the classic Braveheart, my Day 100 this past Thursday and its accompanying freedom from many of the restrictions that have plagued me in my first 99 days post-transplant felt pretty darn good. For those of you unfamiliar with transplant lingo (so, like 99.9% of people), Day 100 is 100 days after a bone marrow transplant and is the first of many milestones along a transplant recipient’s road to recovery. The first 100 days is generally considered the most difficult and the period during which the recipient is at greatest risk for infections, viruses, and GVHD (graft vs. host disease; you’re gonna have to Google that one because it’s a bit too complicated to explain here).

So, you may ask, what are these newfound freedoms? I can now go to stores, the movie theater, and people’s houses AND go for walks AND eat from restaurants! However (and this is a BIG however), these freedoms come with quite a few conditions. I can go to stores during low-volume times and to the movies in the morning if I wear my mask and wipe down everything I touch. I went to the movies with my friend this week and she was literally trying to use a hand sanitizing wipe to scrub down the theater seat cushions. I can go to people’s houses who don’t have pets if everyone (especially kids) is totally healthy. The walk thing, which I was super excited about, is extremely complicated because the sun can trigger GVHD, so to simplify my life I’ve decided that night walks will now be my thing. To go for a walk outside during the day (even when it’s overcast), I would basically have to mummify myself. We’re talking umbrella, hat, long sleeves, long pants, socks, and sunscreen covering every inch of exposed skin, including ears, hands, the works. Sound like fun during hot summer months? I didn’t think so either.

When it comes to restaurants, my meals have to be individually prepared, and everything I eat has to be fresh (consumed or refrigerated by me within 2 hours of being cooked). No food that’s under heating lamps or sitting out for over 2 hours. I still can’t eat at restaurants since they’re typically crowded environments and even during low-volume times, it’s a little challenging to eat wearing a mask...but when I can eat at restaurants, I’m supposed to ask for my food to be delivered to me as soon as it’s cooked rather than waiting until the entire table’s food is ready. You know how you feel that pang of guilt starting your meal when there’s that one person at your table who didn’t get his burger yet, and you stare down at your rapidly cooling plate longingly, hoping each waiter who passes by is carrying his food so you don’t have to wait any longer? Well I now have a totally justifiable reason to ignore that guilt and dig in :).

Here are the places I’ve been so far (most with Zack and a couple with friends): Century Theater in Mountain View, my parents’ house, our friends’ apartment, Macy’s, Lucky, Dollar Tree, Target, AMC Cupertino, Sprouts, Starbucks (caramel macchiato for the win!), and Bed Bath & Beyond. I’ve eaten food from Pizza Hut, In N Out, Five Guys (fries only; no ground beef from restaurants yet), Thai Chili (highly recommend it), and PF Changs (crispy green beans...mmm). My doctor was a little lenient about the whole 100 days thing and let me do most of this starting around day 90, in case you were thinking I did all this since Thursday. No, I’m not that beastly.

On a final note, I’m a bit embarrassed to admit I was more excited about going grocery shopping than about getting In N Out, and I had almost as much fun at Dollar Tree as I did seeing Kung Fu Panda 2 (which was awesome, by the way). But if you know me well, that’s no surprise :).