Saturday, July 26, 2014

Surgery "adventure"

If you're friends with me on Facebook, you may have seen all the crazy updates the past week. If not, let me tell you that I had a rather terrifying experience during surgery on July 18th. I was going in for routine sinus surgery; no big deal, right? Wrong. No one will ever be able to tell anyone in my family that there is such a thing as routine surgery after this experience. I got to the hospital bright and early (5:30 am, to be exact). Everything went fine during check-in. They gave me the way too big hospital gown, took some blood, asked me a million and two questions, and got me all ready to go into surgery. The sinus surgery itself went beautifully. Dr. Eskew was able to get a lot done and fix a lot of potential issues. However, when I was waking up from the anesthesia, my breathing was out of sync. My abdomen and chest were not moving together, and I had uncontrolled movements. As well, my carbon dioxide level was 92; it's supposed to be between 23-29 (so it was dangerously high). The anesthesiologists quickly intubated me again and put me back to sleep. They decided I was having a reaction to one of the medicines they used, so they found an antidote that would hopefully reverse the symptoms. Thankfully, they chose the correct antidote, and the second time I woke up without a problem. They kept the breathing tube down until I was more awake in case there had been another problem. Obviously, I don't remember most of this occurring because I was pretty out of it with anesthesia, but I do remember waking up with the breathing tube. I remember feeling panicked and wondering if I was awake in the middle of the surgery. I also remember wondering why everyone's voices sounded anxious.I remember wanting to grab the tube and yank it out (that wouldn't have been smart, but when your brain is in a fog, you don't always think correctly); that breathing tube hurt!!I remember feeling like I wanted to move, but not being able to. I couldn't even muster the strength to move my arms. For some reason, I thought I was paralyzed at one point (I'm telling you, when you have anesthesia, you don't think correctly).

When I finally woke up completely and was more aware of everything, I was so exhausted. Between having anesthesia twice plus all the trauma that happened, my body not very happy.  Oh, and I gained 15 pounds from my before surgery weight to my after surgery weight from all the fluid they pumped into me. So, you can bet I was going to the bathroom every hour on the hour for the next 24 hours or so. For pretty valid reasons, the anesthesiologists wanted me to stay in the hospital overnight so they could watch me and make sure I didn't have any more issues. So, they rolled me upstairs on my operating bed, dumped me onto my new bed which made noises every single time you moved, put me on oxygen, and left me to "be observed". It was a longgggg night in the hospital with very little sleep, but I was able to go home the next day without too much of a fight.

Since then, I've been recovering at home. Every day gets a little better; I feel like a new person compared to last week. However, I still have a ways to go until I'm fully recovered. I cannot walk up one flight of stairs without taking a break, I can't lift anything heavier than a book, and I sleep all the time. I know I'll get there, but it's going to take time. I am so incredibly thankful for my amazing family who has never left my side through this entire scary ordeal. I am especially grateful for my mom. She is the best caretaker in the world, and I know that she works above and beyond to keep me healthy and well.

Even in the midst of hardship and difficulties, God is good. His love overwhelms me! I know I could've died on that operating table, but I didn't. I'm not done on this earth yet. And until I take my final breath, I will live my life to serve Him and love Him and bring glory to Jesus.

Friday, July 11, 2014

CF summer life

Today, I start yet another round of IV antibiotics. I counted the number of times I've had IVs the other day, but I kept losing track. If I were to make a rough estimate, I'd say I've had 25 or so courses of IV antibiotics over my life. Needless to say, I'm used to the routine: get poked/taped up so my port stays accessed and sterile, run two different IVs every eight hours, flush the port with saline and heparin appropriately, get blood drawn twice a week, get port reaccessed once a week, run the course of antibiotics for three weeks, go to the doctor at the end to check PFTs (pulmonary function test), don't get the access site wet, shower strategically, take zofran (anti-nausea medicine) as often as possible, take naps frequently. When you've had heavy-duty IVs as often as I have, you know all the tricks. Let's be real, I'm pretty sure I know more than most nurses! But that's beside the point. IVs are a part of my cystic fibrosis journey. It's not a part that I enjoy, obviously, but it's necessary to keeping me healthy and strong. Simply put, my lungs need help to do their job, and IVs keep me going. 

I'm also scheduled for sinus surgery next Friday. I'm definitely not looking forward to the surgery. I'm used to anesthesia, but that is still probably by least favorite part of surgery. I don't like the feeling of losing control when the anesthesia gets into my body. To be honest, I tend to fight the sleepy feeling as long as possible until I just give up, close my eyes, and "go to sleep". I don't like waking up from anesthesia, either. I wake up disoriented, unsure of what happened during surgery or what the next step is in my recovery. And I despise not thinking clearly, which happens when I'm waking up from surgery. I could continue about all the reasons I don't like surgery, but instead, I'll say I'm extremely thankful for doctors who know what they're doing and who want to do what's best for me. I'm thankful for technology that allows for surgery to be performed relatively safely. I'm thankful that the surgery even exists so that I can keep fighting back against the damage CF does to my body. 

It's time to fight infection with all my strength and help from medical technology. CF ain't got nothin' on me! If you think about it, please be praying for my recovery process over the next few weeks. I am SO appreciative of all of your prayers, love, and words of encouragement. 

God is good! 

Thursday, July 10, 2014

Thankful Thursday

In the craziness of this life, we often forget to stop and be thankful. We get swept away with running errands, going to school, doing chores, working a job, or spending time with friends and family. None of those things are bad, but it's good to slow down and remember how blessed we are. I haven't written a thankful Thursday blog in awhile, and I decided that today would be the perfect day to write one. 

1. I'm thankful for the time I had in Waco this summer. Not only did I get to work Camp Success (see last blog post), but I also got to know some really amazing people who I am thankful to now call my friends. I was able to break out of my introverted shell and enjoy getting out of my comfort zone. Can you believe it--I actually enjoyed getting out of my comfortable little bubble! I know that God gave me the opportunity to stay in Waco for half the summer, and I am so grateful!! 

2. I'm thankful for my education and for scholarships that help me pay for it. I am an avid learner; I truly believe people should never stop learning! While I know I have learned and will learn many important lessons outside of formal education, I am still so thankful for my college education. I love the opportunity to study under amazing professors and listen to stimulating lectures. I'm beyond excited for my final year of undergraduate education this year before embarking on grad school adventures. I know I will take advantage of every opportunity I have here at Baylor. 

3. I'm thankful for social media. Through Facebook, Twitter, and Instagram, I am able to keep up with friends and family who are far away. I can see what's going on in their lives and know how they are doing. Although I know I need to be careful not to live in a virtual world, I enjoy checking social media for updates. My favorite thing to do on social media is to look at pictures. It's so fun to look at pictures from a long time ago and see how much people have changed! Life is a journey. Facebook, Twitter, and Instagram keep track of some of that journey, and it's cool to look back on the adventure every once in awhile. 

Tuesday, July 8, 2014

On Camp Success

"A career in speech-language pathology challenges you to use your intellect (the talents of your mind) in combination with your humanity (the gifts of your heart) to do meaningful work that feeds your soul."-Megan Hodge

For the past few days, I've been trying to figure out how to sum up my experience as a reading specialist for Baylor's reading and speech camp (Camp Success). I've finally figured it out. Camp Success ignited my heart with a love for the kids who attended camp as well as for my future career. Every time one of my kids improved in fluency, I rejoiced with them. When sounds-symbol relationships began to click in their brains, I couldn't contain my excitement. When they read short stories and answered comprehension questions perfectly that they were unable to answer before, I wanted to jump up and down. When I saw their confidence increase by tenfold, I couldn't wipe the smile off my face. These kids learned so much in just four short weeks, not only about reading and language but also about their ability to communicate and about their own self confidence. Parents came up to us with tears in their eyes about how much we made a difference in their child's life. The kids left with bug, beautiful smiles and with a new outlook on reading and language. The fourteen kids I worked with will always be on my heart. I won't forget their amazing hard work or quirky personalities anytime soon!! 

Through camp, God confirmed in my heart once again my future career as a speech-language pathologist. As the quote above says, I love combining my intellect with my heart and my desire to help people communicate more effectively. Being an SLP makes a visible, lasting difference in our clients' lives. Communication is so important to life. If you can't communicate well, life can be pretty lonely and isolating. I know that God gave me talents and gifts to become an excellent SLP so that I can serve people in the future by teaching them how to communicate and giving them secrets to language. I am so exited to see how God uses my future career as an SLP!! I wouldn't trade being a speech pathology major for anything. 

Tuesday, July 1, 2014

Exciting update!!

The following is written by a Cf patient who participated in a recent study designed to treat the underlying cause of cystic fibrosis. 
Enjoy the update!!

The result of a trial by Vertex Pharmaceuticals for a drug that treats the underlying cause of Cystic Fibrosis was released. I read the data in The New York Times over and over until it sunk it.

The study showed the drug combination of Ivacaftor – also known as Kalydeco – and the new drug Lumacaftor has a groundbreaking effect on people with Cystic Fibrosis who were carriers of the gene combination double delta F508. It’s the most common genetic mutation in just under 80pc of the world’s population with CF.

The results narrated perfectly how and why I had been feeling certain ways for the past 12 months.

I was one of the lucky 1,100 people deemed suitable and selected for the trial, which began late last summer.

It enlisted people with Cystic Fibrosis with double DeltaF508 from across EuropeNorth America and Australia. All participants signed confidentiality forms.

Any major deviation from this would jeopardise not just one’s own place but the place of all other participants in this never before witnessed treatment effort, which has been 22 years in the making. 

I sat on my hospital bed shaking in the knowledge that this was a historic day for people with CF, their families, their friends and their medical workers worldwide.

This is the first time in the history of the illness, since the gene was discovered in 1989, that there is a treatment that treats the origins of the illness for the larger population and not just the symptoms.

Much of the finances to keep these trials going were borne by the CF Foundation in the USA who worked hard to keep research going.

There were two divisions of the trial, which were each then divided in three. Patients participating took one drug - ivacaftor and either a low or high dose of another drug -lumacaftor.

Patients in the third group received a placebo. After 24 weeks lung function had improved in all four groups taking the combination drugs. Lung function fell a little in the placebo group.

The study found the drugs reduced infections from 30-40pc meaning less time in hospital and a better quality of life. 

It means more time for living, for love, for work, for school, for chasing dreams, for all those things that any person wants. 

I started the trial in August and immediately felt a difference. I cleared more mucus from my lungs and buzzed around with unflappable positivity. I believe now this is probably what they call ‘the placebo effect’. 

I wanted so badly to be on the drug I believed that I was. While tidying my room a month later I found myself unable to stand up after leaning to pick something off the ground. 

A trip to the hospital registered a lung collapse and back on intravenous treatment I went. The support of solid friends at this time really kept me steady.

One of two things was happening. Either this drug would just not work enough for me to see a real difference – because this was a possibility. Or, maybe, I was on the placebo. I still don’t know for sure. But what I do know is this.

In January I got a severe flu which was complicated by CF and I was hospitalised. While recovering the next stage of the trial started. Every participant now started some dosage of the drug combination.

By my birthday in March I was still out of hospital. I was still well. When May came around I had defeated two postnasal drips that usually would cause at least two weeks in hospital on intravenous antibiotics. 

My sputum was thinner.  It came up easier. My energy was higher. I could follow through on so many things socially and professionally. This was an invigorating concept.

In recent prolonged periods in over 20 degree heat instead of finding breathing difficult I felt normal.

Instead of trying to deal with breathlessness after a day or two in extreme heat I was comfortable. I barely noticed the difference. This made me cry a little at the sheer magic of what was happening. My body had really changed.

It’s June now and I’m in hospital for the first time since January. The last time I had that length of freedom between admissions I was maybe five or six years old. This treatment is not a cure for CF, but to see the real change in my own body is a miracle.

Of course I must still do treatments as normal and my CF has not gone away but it has changed.

It’s not so much a drastic change, it’s a gradual one that I give thanks for every day.

I am thankful every time I realise I am still out of hospital. Or when I can plan a week or two in advance to go to a gig or a birthday party, or meet a friend and not have to rest on the idea that I might not actually make it despite my best intentions. 

The transformative feeling the past few months have brought is overwhelming at times - like it’s almost too good to be true.

My weight has increased too, which is a big deal in CF as it often drops when unwell and leaves less ammunition to fight infection.

But there is a more substantial thing too, something completely unexplainable or immeasurable by science. It’s best described as substance, or a sturdiness, in the body that was not there before.

It is something full of energy and vitality that allows me to look towards the future with the thought that I might actually make it. I feel stronger. The cycle of infection that was once so predictable has seriously reduced and in many ways my body feels like my own again. I have a new quality of life.

The next step for the drug combination is application to and approval by the Food and Drugs Administration and the European Medicines Agency so that negotiations can start.

Typically this should take eight months. However this must be watched carefully and will be by campaigners and people with CF worldwide. It has been estimated by analysts the drug will cost between 160k and 200k a year per person which is significantly less that Ivacaftor alone which was approved in 2012 and  treats a much smaller population.

The struggle to get Ivacaftor (Kalydeco) to people who need it must not be a repeated one.

When the combination eventually arrives it will change some much of the worlds population with CF forever which will in turn be more economically beneficial to health services everywhere.

Futures that were not possible, families that were never considered and adventures that may not have otherwise happened will become possibilities. In many ways, life will begin again and we all deserve a chance to live it.