CF Awareness

Last week was the annual Race Across America, aka RAAM, which is the crazy extreme bike ride across the entire country from California to Maryland. As usual, our town was along the route and once again the local bike shop was one of the time stations. Riders and their support crew from all over the world came right through our town. I think that's just so cool.

Our time station here is unique, because it's actually a destination instead of just some mile marker or a tent along the side of the road, and I have personally heard people say it's like an oasis and they think they're dreaming. The volunteers provide food, drinks, a little pool to cool off in, not to mention the bike shop to fix things, and—hopefully—good company and a change in the faces you see every day.

Last Wednesday I decided on a whim that I would help out for the afternoon. I talked with people from Australia, Brazil, Japan, and Britain. As Vicky, a lady who does this every year for as many hours a day as she can, says "I can't travel the world, but here the world comes to me."

So this one crew came in, and I'm talking to this guy, welcoming him and letting him know where he can find the food and drinks, the usual drill. He holds out his hand and says "Hi, I'm Jay." I said "I'm Jamie," and he chuckled and said "Oh, that's easy." He was their head crew chief, I found out, and I was asking where they were all from. Their group was from everywhere, from Arizona to New York, to Florida, plus a couple Europeans. He himself resides in Colorado.

I then asked what charity they were riding for and he says "Cystic fibrosis."

I think my mouth kind of fell open, I stopped and was like "Really?" And he, confused a little, said "Yeah."

I then told him "I have CF." He kind of put his arm around me and had the same awestruck facial expression I did when he initially said it. I almost couldn't believe it, and he walked me over to show me their van and there was the CFF logo right on the side.

So then he was asking me about what gene mutations I have, if I did the vest, how I'm doing, if I'd be able to take any of the new drugs they're coming out with, which are all great questions and clearly this guy actually knew about CF. I told him about my recent hospitalization and said I was doing well and getting back to the gym. I asked how he got involved with raising money for CF, and I believe he said a friend of his has a son with CF.

He wanted to introduce me to a bunch of people in their team, he said they'd want to meet me, and we obviously told them that I had CF. I thanked them for riding and such and they were all so nice. You hardly ever meet a group of crabby people during this RAAM, but this group was really fun and groovy. They hung out for a while too while waiting for their teams—typically some of the crew will venture ahead to take a small break when they can, so they were ahead of the people actually riding the bike.

This is Jay, my new best friend that day.

A little later Jay and I were chatting again, and he said "I'm sorry, I'm kind of tearing up. This is just..." and he shook his head in disbelief; I said "I get it, I think this is so great and I am SO happy we were able to cross paths." They were called Love, Sweat, and Gears (and in bike nerd-ness, they were also cool because they had a team riding on tandem bikes, which you definitely don't see every day.)

Augh... it was just the coolest thing! I mean, how awesome that I just happen to be working at a time station for this random bike ride at the exact time that a team comes through and they're raising money for CF? And I happen to strike up a conversation with their crew chief? I mean, how awesome is that!? It was definitely a God moment that all of this came together, clearly we were all meant to meet each other. I still can't get over it... SO COOL!

One of the tandem teams.

Fast-forward to last night, and I went downstairs to treadmill, I turn on the TV and was going to watch American Ninja Warrior while listening to some tunes. So, I can't hear the TV but I see this guy walk up and it says he's from St. Charles, MO, so hey that's cool. And he is wearing a shirt that says "CF Warrior" on it. Obviously that registered in my mind, but CF can stand for a lot of things so I didn't take much pause. Then they launched into his back story, like they do for some contestants on shows like this, and he's talking about his cystic fibrosis. I pulled out my earbuds to listen and wow, also a cool story/God moment.

He talked about how he decided to get in shape and exercise and doesn't need medicines as much to manage his disease (you have to be incredibly fit to do these ANW things [they make it look so easy, but it's incredibly hard stuff.]) And obviously, the commentators honed in on the inspiration part of it and such, but ya know what? It really was inspiring. For me, at least. Especially since I saw this right as I began my own workout, it inspired me to kick it up a notch. And I did: I ran 2 1-minute intervals along with the rest of my walk on the treadmill, and walked/ran a total of 1.35 miles in 30 minutes. Woo hoo! I had a short coughing fit when I was done, but I felt GREAT afterward.

It's Been A Long Week...

I had a checkup yesterday and we stopped my meds. Thank you Jesus. I was going to demand that's what we do, but my doctor said it before I even had to argue my point.

Oh man, it's been a rough week. I have been dealing with side effect after side effect. It all started last Tuesday with a stomach ache. From there it just continued to go downhill.

I had to have blood work done on Thursday for kidney functions and med levels, got there and found out they can't draw from ports in the lab. We could call up a nurse from the ER, but it might take an hour, and it was a timely thing, so I said no. I don't know what that girl did, but it was by far the most painful blood draw I have ever had in my lifetime. I was yelping, crying, and almost screaming in pain. It was awful. She didn't hit a nerve—I know what that pain feels like—but it almost felt like she was stabbing my muscle or something. Ugh! From there, we found out my med levels were WAY too high, and non-surprisingly my kidneys weren't doing great because of it either. So, not great news. We adjusted things and lowered my doses, which made my schedule a bit better. I also drank nearly 2000 ml (aka 65 oz.) of water Thursday to try and help the process.

All told, I had one or more side effects going on all the time for the entire past week:

• abdominal pain
• gastritis
• back pain
• lethargy/tiredness
• stomach cramps
• depression
• chest pain
• swollen lymph nodes, neck pain
• weakness

...and that's just partial list. It's been a pretty difficult week. I have never been so aware that I was essentially having to poison myself in order to get better. 

Lesson learned: If I'm ever on this medicine again, stay in the hospital for the full duration. 

Yesterday I woke up with chest pain—centralized around my heart area—and that was the final straw, I had my mind made up that I was DONE; no more of this. At this point, a few more days is not going to do me any good. What I need is to EAT normally again and EXERCISE normally, which have both been compromised since I've been feeling like crap. 

Today I'm already feeling a bit better. My chest pain is subsiding. I am also feeling much better mood-wise, and you can even hear it in my voice. My mom says I have more color in my face already, too.

Here's hoping for an even brighter day tomorrow!

Back at Home

Hi folks! I figured I was due for an update here.

I went in the hospital last Monday and came home two days ago. Things are going fine, though this time I'm dealing with a super resistant strain of germs. There were two bugs in my system this time, like usual, and one of them was resistant to practically everything except for two medicines, and even then it wasn't 100% sensitive. My doctor is currently on a trip to the holy lands, so the pulmonologist we also work with was filling in. I like this doctor too; he is aggressive in treatment and in getting things taken care of. He's also fairly easy-going, flexible, and kinda funny too.

So this doctor had been working closely with a pharmacist there to figure out what drug (of two choices) would be best case for us. Oh, and did I mention I'm allergic to both of the options? So in addition to that, I had to go through yet another desensitization process for the med we chose, which is a penicillin. As a crash course, if you're unfamiliar with that term, "desensitization" is a methodical, timed out process where they slowly introduce an IV drug into the system. It starts with like 0.01 grams, and you work up to a full dose, and it lasts about 5 hours. I met the pharmacist a couple times too, and he did a whole lot of math and analyzed things in my system that I don't even know about and chose the best possible way to deliver the drug, which would be every four hours. Typically it's every 6 or 8 but, again, for reasons beyond my scope of medical knowledge, he figured out that every four hours would be best. But... only for 30 minutes every time. So whew, not that bad.

All of that went fine and I have not had any sort of reaction at all to this day.

I came home this most recent Monday, two days ago, and have been doing home IVs. It's been going fine, but my schedule is demanding. I'm hooked up to meds for ten hours a day. The meds come in these little balls which slowly deflate, pushing the medicine in thanks to gravity or something like that. So granted, it's not like I can't do anything while these are going in, but I'm basically under house arrest. Not to mention, like I said, my one med runs every FOUR hours, and instead of a half hour like in the hospital, it takes one hour here at home. So the most time I ever have between doses is three hours, and yes this includes overnight with sleeping too. So yeah... demanding.

I'm feeling better, though still would like to get even "more better". I'm not super concerned about the resistant strain of bugs I'm growing right now. Maybe it's because I worked through all of those emotions last time when we thought it was going to be uber resistant, and it wasn't, but when I look through my entire history of cultures, each one is different. I am hopeful and have faith that next time, we'll see a different bug as well and will treat it accordingly. 

But I'm glad to be home and sleeping in my own bed. Jarrod had an idea to figure out a way to set up my meds and such in our bedroom, and I bought one of those plastic storage drawer thingies on wheels, rolled it in next to my nightstand, and tried it out last night. I must say, I think this is going to be one of the best things for handling this (I have to do these thru next Monday or Wednesday.) I feel much less tired than I did yesterday. There's just something about only having to wake up and walk a couple steps to hook up to the meds, versus walking across the house to the kitchen where I used to always do everything with my IVs. I don't have to wake up as much, in a way, so falling back asleep doesn't take as long. So props to Jarrod for coming up with that!

I'm also glad to be eating my own food, or whatever I damn well please (AND I got popsicles just in time for the hot weather! Popsicles should be enjoyed at any age, don't judge lol.) The food at the hospital has sadly gone WAY downhill since I first started going there. They've removed many choices from the menu, and the quality of the food has also gone down. For most people, this wouldn't be a big deal because their hospital stays are short. But for us CFers, who are there for 1-2 weeks, it's terrible. You can tell they're really cheaping out on the food, which is sad. No, people don't expect the food in a hospital to be amazing, but these days there are few excuses for it to be borderline inedible. In addition to that, the people working in the kitchen suck. I don't know if they just don't care, if they have no one doing quality control, or if there's a communication issue, but at least once a day my order was wrong or missing something, and I heard from the nurses that this is common for everyone; having that many mistakes every day is ridiculous. It's frustrating. So even though I'm not quite feeling up to cooking a bunch here at home, since I'm trying to get sleep when I can (three hours at a time), I'm still SO happy to get away from the hospital food.

That's about all I've got. I'm happy to have my dog here with me. I think she is tired because she wakes up with me when I get up for my meds during the night. So she's been a pretty lazy, sleepy dog, but that's okay. She was excited to see me when we got home, which warmed my heart so much.