Wednesday, March 22, 2017

CF letter 2017

Dear friends and family, 

Happy 2017! I hope this letter finds you in good health and that you all are doing well. Since my last letter, I’ve had a bit of a crazy year. I have continued making my way through grad school, working in a variety of settings with a variety of clients. I have loved grad school and am so excited to become a speech-language pathologist! I know this is exactly where God has placed me. In May (right before the CF walk), I will graduate Summa Cum Laude from the University of Texas at Dallas with my master’s degree and will officially enter the working world. It’s a little terrifying because I’ve been in school for so long, but I’m excited to see what lies ahead. As well, I have another bit of wonderful news—I’m engaged!! Eric (my fiancé) is amazing and so supportive. He is not scared off by my CF, and he is so willing to learn everything he can about my health. We are getting married in July, and we are so thrilled!

My health has been a bit rocky this year. Every time I got a cold in the fall, it turned into a full blown lung infection. I was on IVs in August and had to go in to the hospital because I needed to change my IV antibiotics. I was on IVs again in December after my PFTs dropped into the 40s. At the beginning of January, just two weeks after finishing my course of IVs in December, I started feeling extremely short of breath. My heart rate was high, and I started requiring oxygen (a new experience for me). After a few days in the hospital, the doctors found a blood clot in my lungs. I started on a blood thinner, but after two weeks, I went back in the hospital, needing to switch blood thinners. I am finally starting to feel better, but the recovery has been a long journey, and I am still not fully recovered. Needless to say, the past year has been difficult on my lungs. I’m hoping and praying for stabilization of my lung function and for a healthier year.

This is a great time for CF research. There are so many amazing studies going on! Some of you may remember I took part in a Vertex study last year. While I was taken off the study drug in August after data showed the drug did not help my specific mutations, I was so glad I had the opportunity to be in the study and contribute to the fight for the cure! Without willing participants, CF research cannot move forward. Similarly, without donations from people like you, companies like Vertex cannot continue to understand CF and the best way to treat it. Every donation, every prayer, every Facebook post, and every mention of cystic fibrosis helps raise awareness and, in turn, funds for CF research. My family and I will be participating in the annual Great Strides Walk in Dallas on May 13th at Vitruvian Park. We would love for you to join us! If you would like to sign up for the walk or would like to donate to the CF Foundation (or both!), go to the link at the bottom of this page. Thank you all so much for your love, support, and prayers! CF can’t be beaten without the help of dear friends and family like you all. I am very grateful to have all of you in my corner!

Love,
Emily Ingram

Friday, February 24, 2017

CF limits

I was always told I could do anything.

That CF couldn't stop me.

That, even though my day to day life looked a little different with treatments and pills and hospitalizations, I could still be "normal".

I'm finding out now that's not necessarily the case.

Growing up, I knew I was different, but I still functioned like a normal kid. The only time I remember CF limiting me was my freshman and sophomore years in high school. My doctor, mom, and I made the decision to sit out of marching band my freshman year and to keep me on the sidelines running the metronome and helping how I could without actually participating my sophomore year. Junior year I was finally able to join marching band, and my senior year I was a drum major, so CF didn't limit me that much by the end of it all. I finished college in four years with a major, a minor, honors, and summa cum laude. I am in grad school now and will graduate on time summa cum laude with my masters in speech pathology. While CF was always evident, I never felt like I couldn't do whatever I wanted to do.

Until recently.

I am going to start looking for a job soon, and after much thought, I came to the harsh realization that I can't work full time like a "normal" 24 year old. Staying healthy is a full time job now, no longer something I can just add on to my daily schedule. I don't have the time or energy to have a full time job and take care of myself the way I need to. As hard as that is for me to realize, I know it is what's best for me in the long run. I am such a hard worker, and I give 110% to everything I do, so I know if I tried to work a full time job I would run myself into the ground and be able to work fewer years than if I worked a part time job. The other big factor I'm forced to think about is what setting I'm going to work in. Different settings expose me to different amounts of germs. For instance, I cannot be a speech pathologist in the hospital because I would be exposing myself to a ridiculous amount of germs. I have to think much more than a "normal" graduating speech pathologist about where I'm going to work. It's not just about my preference; I have to think about my health, as well.

I still try my best to not let CF affect my life. I have goals and dreams and aspirations. However, I know that I can't ignore the reality that is a progressive, chronic disease. Life is a balancing act, and I'm trying my best to learn that balance.

Sunday, January 15, 2017

Thoughts on the healthcare debate

If you're going to read this post, please promise me this: you will read it all the way through AND you will try to read it from my perspective. Deal? Okay, let's proceed.

I haven't kept very quiet on social media about my opinions on the healthcare debate. However, you can only write so much on a short Facebook post or tweet. I am going to flesh out my ideas on healthcare and present to you exactly why I believe what I believe.

1. If you have read any of my blogs in the past, you know I have cystic fibrosis, a genetic, progressive, life-threatening disease. My healthcare costs are undeniably massive. My family maxes out on our out of pocket deductible within the first month or two of the year, depending on what is going on in my life. Obviously, my family has to have the best coverage possible so that I can get the medicines I desperately need. Before the ACA (when I was growing up), people would ask me what I wanted to be when I grew up. Often, I didn't know the answer because I liked so many different things. However, my go to answer was always "something that will provide health insurance". Even at an early age, I knew insurance companies could discriminate against people like me because my healthcare costs were "too expensive". Without insurance through a job (or through a spouse's job), I would be unable to have health insurance, and I would be completely bankrupt trying to keep up with my healthcare expenses.

2. While the ACA is not a perfect first draft, it is a step in the right direction. Before the ACA, our healthcare was incredibly messed up, and people not affected by it just turned to look the other way and not deal with the problem. Before the ACA, healthcare was for the healthy and wealthy. How messed up is that? The people who needed coverage the most couldn't get it. The ACA allows for people like me to have access to healthcare. It also keeps insurance companies from putting a lifetime cap on insurance expenses. You think a $2 million cap on healthcare expenses should be plenty to last a lifetime? Think again. I would go through all that money in a matter of a few years if I stay relatively healthy. The ACA has also helped women get reproductive care, especially women who wouldn't otherwise be able to afford it. People under 26 can also stay on their parents' insurance, a huge benefit to many in their 20s just starting out.

3. People complain about the ACA because it requires everyone to have health insurance. Here's the kicker, people: the only way universal healthcare works is to make sure everyone has it. Insurance companies don't want people like me on their insurance. I am a liability, a loss of money, a pain in their butts. Even with all the money my family gives to have the best health insurance, the company still loses thousands upon thousands of dollars on me alone. Economically, it makes zero sense for an insurance company to give me insurance. That's just a fact of business. They need people like my healthy, young peers to have insurance to balance out the cost. People who go to the doctor once a year, if that vs people who go to the doctor every month or so, get blood drawn constantly, get IV antibiotics frequently, and take a dozen or so different kinds of pills. I don't blame the insurance companies for any kind of "lack of compassion". They're just trying to make ends meet. But I keep hearing this argument over and over again when I express my concerns over the repealing of ACA-"oh, insurance companies won't take away your healthcare. They have more compassion than that". Yes, they will take it away. I do not make sense economically.

4. I promise you, there will be a day you need health insurance. Whether your wife gets diagnosed with cancer, your mom falls and needs surgery, you get pregnant, or your child is diagnosed with cystic fibrosis. Don't be so short-sighted that the only thing you care about is your premiums and deductibles right now. If that's all you care about, good, affordable healthcare won't be there for you when you most need it most. From everything I've researched, if the ACA is repealed, even if the preexisting clause is kept, my premiums could go up to as much as $10,000 a month, or insurance companies could go back to putting lifetime caps on its insurers. Obviously, my fiancé and I cannot afford that, especially not on top of additional medical expenses. Is it really fair that I, part of the sickest group of people in America, literally lose all financial stability because of a health condition I was born with and have very little control over? Would you put your daughters, sons, brothers, sisters, parents, or friends in that kind of situation? Do you really care that much about saving a little bit of money in the grand scheme of things?

Honestly, I'm scared of the future of healthcare. I'm scared what people in government are going to do to my access to affordable healthcare. I'm scared senators and representatives who don't have to consider what it's like to live with a chronic, costly disease won't consider it and will make the best decision for THEM-padding their pockets with extra cash and making sure they (the healthy and wealthy) save the most money possible. Is that selfish drive really what matters? Do we as Americans really lack that much compassion? Bottom line: repealing the ACA without having a clear, precise plan in place that works for ALL Americans (and let's be honest, no one has a plan right now), is completely irresponsible.

America was founded on the idea that all people should have "life, liberty, and pursuit of happiness". If we don't have healthcare for all people, we are denying individuals life. Is that truly American?

Friday, December 30, 2016

Books 2016

As you all know, I love to read. Here are the books I read in 2016! Let me know if you have any favorites I should read in 2017 :).

Thinking in Pictures by Temple Grandin
The Journal of Best Practices by David Finch
The Brain that Changes Itself by Dr. Norman Doidge
The Diving Bell and the Butterfly by Jean-Dominique Bauby
Among the hidden by Margaret Peterson Haddix
Among the impostors by Margaret Peterson Haddix
Still Alice by Lisa Genova
Schuyler's Monster by Robert Rummel-Hudson
Why not me by Mindy Kaling
The Jungle Book by Rudyard Kipling
A Midsummer Night's Dream by William Shakespeare
5 love languages by Gary Chapman
Fahrenheit 451 by Rat Bradbury
The BFG by Roald Dahl
Unbroken by Laura Hillenbrand
41-A portrait of my father by George W Bush
The Meaning of Marriage by Tim Keller
The Secret Garden by Francis Hodgson Burnett
Pollyanna by Eleanor H. Porter
Life from a CF Cornerman by Raymond Poole
The Magnolia Story by Chip and Joanna Gaines

Monday, October 24, 2016

Exciting news!!

It's been awhile since I've written a blog post. This semester has been busy--not only because of school stuff, but also because of exciting life things. About a month ago, the most amazing man got down on one knee and asked me to marry him! And of course, I said yes!

Honestly, there were times that I questioned if I would ever marry someone. Living with cystic fibrosis is hard. Choosing to be with someone with cystic fibrosis is almost crazy. Think about it; I am not a normal 23 year old. I have to plan and plan and plan to make sure I fit breathing treatments, exercise, and eating into my schedule. When I travel, I have to take a crazy amount of stuff with me--my Vest, nebulizers, compressor, pills, inhaled medication, puffers, and snacks. I have to make sure I sleep 8-9 hours a night because my body uses more energy than most, and I need sleep to fight infection. I have to have a course of IVs at least twice a year. It's hard to be spontaneous and adventurous because CF really doesn't allow for that. CF is progressive, meaning my health is just going to become a bigger, more frustrating part of my life. Yet my fiancé still loves me and still chooses me. I told you he might be slightly crazy! ;)

One silver lining of CF is it's a great filtering process for relationships. I never had a relationship really before my fiancé. I'm pretty sure my CF scared guys off, which I'm ok with. Better to scare people off who can't handle a health crisis before getting into a relationship than to be in a serious, committed relationship when the guy realizes he can't handle it. Many people with CF are now getting married and having families because of all the great CF research and therapies available. But CF is still a big thing to choose to deal with, and no average (or less than average) person will willingly take that on. My fiancé is incredible, as is every significant other of a person with CF.

Note: I'm not saying that people with CF don't have something great to offer their partners, because we definitely do. We each have our own unique passions and talents, just like everyone else. We also tend to pursue a life worth living because we know how precious life is. We often love fiercely and forgive quickly because we know tomorrow is not guaranteed. We are loyal to the people who choose to stick by our sides through thick and thin. However, I am saying that the people who choose to get close to us (friends, significant others, and family members) are amazing people and tend to be the most caring people you will ever meet. They're not scared off by a diagnosis or by a theoretical life expectancy, and they are some of the best encouragers I know. I am truly blessed to have found a man who loves me and cares for me like my fiancé does. Not only that, but I also have some of the best family members and friends a girl could ask for. I thank God every day for surrounding me with such amazing people!

Friday, August 19, 2016

The end of VX 661 study

As most of you know, for the past 7 months, I have been participating in a Vertex clinical trial testing a drug called VX-661 in combination with Ivacaftor. On Monday, Vertex released a statement saying they are stopping the trial for people with one copy of deltaF508 mutation and one copy of another minimal CFTR function mutation (what they refer to as "het-min" mutation combination). Meaning my part in this study is finished. The results thus far showed that the drug was not providing meaningful benefit and therefore was not worth the time, effort, and money to continue studying. This drug combination is still being studied in other mutation combinations and is thought to be more promising.

When I heard the news on Monday, I was filled with mixed emotions. For starters, I so desperately want there to be a cure for CF, and we're so close I can almost taste it! Yet we're not there yet, and my patience is growing thin waiting. Also, I've seen so many great success stories for people on Orkambi and Kalydeco, both drugs that will not work to treat my mutations, and I feel the clock ticking. I want to be seeing those kinds of improvements. I want my lung function to go up, not down. I want to be able to breathe fully and deeply. I can only do so much for myself when it comes to beating CF, and I want a chance to experience more life like those on Kalydeco and Orkambi. Don't get me wrong, those two drugs are not cures and are not the solution to every CF patient's problems, but they have helped some people tremendously. I had hoped VX 661 would help me, even if it was just for a little bit before a new drug came out that was even better.

However, I'm not surprised that the VX 661 study was discontinued. I really didn't see any noticeable improvement while in the study. My PFTs did get a nice boost in May, but I think that was more due to the fact that I was training for a 5k than the medicine. Overall, nothing about my health  changed, and I never felt any different. In a way, it's nice to be released from a study that's not working so I can possibly participate in more promising studies in the future.

Am I disappointed in the results of the VX 661 study? Absolutely. Do I regret my decision to participate in this study? Not at all. I can take pride in the fact that I helped researchers discover what doesn't work so they can try harder to find what does. Failure often comes many times before success, and I am happy to help science take one step further to finding that success. With my specific mutation combination, the researchers believe it will take a triple drug combination to correct the CFTR dysfunction, and Vertex is working fervently to get this combination to the public, with studies hopefully starting by the end of this year. I hope to be part of more promising studies in the future--there are a lot of exciting opportunities on the horizon!

Thursday, August 18, 2016

Crazy week, crazy life

I like to make life difficult. I try my best not to, but it just always happens. Sorry friends and family who have to deal with me ;). I think it's part of the cystic fibrosis code that nothing health-related can ever be easy!

I started on IV antibiotics on August 2. By this point, I had been on oral Bactrim for 3 weeks and a course of prednisone to help my struggling lungs. My lung function was down to 49%, down from 60% in May. The plan was to start IV Ceftazadine and IV Levaquin for 3 weeks, which would finish just in time for my fall semester to start back up. At the beginning of the IVs, I felt like I was coughing up a lot of gross stuff and getting the excess mucus out of my lungs. However, I did PFTs again a week after starting the IVs, and the results were disappointing. Even though I had been doing 4 breathing treatments a day and exercising twice a day, my PFTs had gone down to 45%. My doctor checked my most recent sputum, and the sensitivities to the antibiotics had changed. We decided to change IVs to IV Bactrim and IV Meropenum. After several days on that regimen, however, things still weren't really improving. I was running a fever off and on throughout the day and night, and I was very short of breath. I wasn't coughing up much, but I lacked energy and just didn't feel like I could breathe. On Sunday after having a fever of 102 during the night, my doctor wanted me to be admitted to the hospital to figure out what was going on.

If you know me, you know I do not go in the hospital unless I have to. My parents have always encouraged home IVs and know that I will get the most rest and recovery benefit from being at home. However, we had to figure out what was going on. We drove all the way to the hospital and attempted to get admitted (note that I say "attempted"). We had to go through the ER to be admitted since it was a weekend, but the ER truly had no idea what to do with me. Thankfully, I have a very assertive mother, and she told them exactly what to do and how to best protect me from all the disgusting ER germs. We eventually got a room and settled in for a very restless night. I ran fever that first night in the hospital, but there were no orders for Tylenol in my chart. My nurse called the on call resident, and he said they wanted to "max out my fever". Whatever the heck that means. Yet did anyone ever come back to check my temperature? The answer is no, of course not. Instead, I woke up with a huge headache and still no answers.

On Monday, we got all the test results back. My blood was fine, and I had no sign of bad infection. My chest X-Ray from before my IVs showed a pretty clear spot of pneumonia in my right lung, but my X-ray from my ER admission showed that had cleared up. So no more pneumonia-woo!! My CT scan, which is a 3D scan of the lungs, showed what they call "ground glass". That could be a sign of inflammation or can be the after-effects of something like walking pneumonia. Regardless, the treatment is heavy duty steroids. It was good to see my doctor in the hospital and talk through why it was taking me so long to recover this time.

However.....

I HATE being in the hospital. The level of incompetence is indescribable. I won't begin to bore you with the details (and I'll get mad if I start thinking about it again), but the number of mistakes they made in my brief hospital stay was ridiculous. I'm pretty assertive when it comes to my health, and my mom and I both demand the best, so we're not going to put up with any mistakes. I also hate how germy the hospital is. There were 11 other CF patients in the hospital when I was there. Not including all the other sick people. I have gotten new bacterial infections in my lungs after being in the hospital before, and I do not intend for that to happen ever again.

Long story short, I got out of the hospital Tuesday morning as fast as I could. I am on a high dose of steroids (prednisone) and will finish IV antibiotics on Tuesday. I will do PFTs on Tuesday and reevaluate how things are going. I am already feeling better. I haven't had fever since that night in the hospital. I went to the gym yesterday and felt like I could breathe a lot better. My fall semester starts on Monday, so I'm cutting it pretty close. Gotta keep things interesting in my life!