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Guest Post by Destiny Whittington
My journey with cystic fibrosis started when I was eighteen months old. The doctors told my mom to take me home love me until I was gone; I wouldn’t see three years old. But, as I got older, I was relatively healthy, so much so that I had no idea that I had CF ‘til I was twelve years old. My mom never came out and said to my brother and me “kids, you have a terminal illness.” We took our breathing treatments, our enzymes, and we did our clapping but to us it was either a game we played, or I just thought everyone took meds, so everyone has what I got. Little did I know that was far from the truth.
When I was ten, I was diagnosed with rheumatoid arthritis. That was the first moment I truly felt my world falling down around me. I love basketball and was good at it. I ran track, coming in first or second place. My dream was to join the navy and play basketball for them, while getting my training and education in marine biology. I was an active child I didn’t have time for CF or this RA. It wasn’t in my lifetime dream or plans.
The doc had told my mom those grim words behind his concerned smile, “take her home and love her she will be a vegetable by the age of sixteen years old. She will never learn to drive a car or go to prom. Think of a nursing home you want to put her in, to care for her when you can not anymore.”
At the age of twelve, my CF doc had this brilliant idea to help me gain weight, which was to insert a G-button to help ease the pain off my joints, by adding some meat on my bones. Two days later I was in Texas Children’s Hospital, in Houston, Tx having a fundoplasty and a G-button insertion, and just as he had said: I gained weight. My arthritis had its good days and bad days, but then at the age of seventeen it went into complete remission, with very few to no episodes.
I finally, by the grace of God, graduated high school and went to college. I begged for my doc to take out my G-button. He agreed, against his better judgment, but I promised him I would stay at a healthy weight. That ended up being more of a job then I first thought. Eating lots of calories seems like everyone’s dream but damn 2k - 4k per day is a lot of eating!
After college was the first time I ever experienced hemoptysis or pseudomonas. Before then, I had never heard those words before. I was in and out of the hospital - sometimes for months at a time - getting to go home for a week or two, then back in. Out of a twelve month year, I was in for nine-and-half months, total. My doctor thought right now would be a good time to put in a port a cath.
Then, in December of 2004, while moving into my new apartment on the third floor, I began to feel wheezing. I thought to myself when I stop I need to do a quick breathing treatment. It began to get worse… Then, a very familiar and unwanted taste began to make itself present in the back of my throat, and with one cough I saw the parking lot turning a dark, deep red color. I went back up the stairs as fast as my body could carry me, filling up the sink will blood. I thought in my panic state of mind, to grab a cup and collect the blood. When the blood showed no sight of slowing down or stopping, I thought to call my mom (who worked thirty minutes from me and it naturally took her an hour to get to me). I was getting weak, I could barley talk, and by the time my mom had gotten there, I was passed out. My brother and Mom carried me down the stairs. Even in that state, my mindset was: I can still walk down the stairs. Failing miserably to get down the stairs by myself.
After arriving to the ER, I handed the cup to the nurse and doc, who were amazed at the amount of blood: a whole cup. I was being rushed in for an emergency embolization and, due to the amount of blood I had lost; I also had to have a blood transfusion. When I woke up my doc was standing over me and began to tell me what was going on, what they had done which most of it I remember or knew already. She said that the cup I had brought in had masses in it. I thought yea, it is probably my bbq sandwich I had eaten only minutes earlier but she went on to tell me they had done a biopsy of the mass and it was in fact, lung matter, I had literally coughed up pieces of my lung. My regular CF doc had came into my room sat down with me, smiled and said “Destiny, you are coughing up a lung, you have a few options here”. She then began to explain to me that I would probably want to consider taking that part of the lung out, or have it replaced. I didn’t think either was a good option for me. She explained that the bleeding could happen again and that the next time it may not stop and could kill me. “a ticking time bomb” is the words she used. I stuck with my guns, after getting the scare of my life I vowed to start walking, and whatever else I had to do to get better.
My pfts were in the high 90s and I was feeling pretty good and then about two years ago I began to get lazy, unmotivated and on 09-11-09 my PFTs were at 80% fev1: 2.6 the lowest I have had. I was getting my prescreening to do a research drug for Texas Children’s Hospital and my PFTs had to be 80 or lower just so happened they were at 80% a part of me was happy b/c I wanted to do this study but another part was sadden. I had seen that my laziness had let me drop so low. I had been reading Ronnie’s blogs and watching him exercise and missing that part of my life, so I told my boyfriend Jack that we needed to start exercising, instead of taking my dog in and out to do potty business, I now walk her around the block or a mile at the park coming in coughing bringing up all kinds of stuff. On 11-10-09 my PFTs were 95% fev1: 2.86. There are still days when I don’t want to go walk a lot due to my RA, or if the weather isn’t permitting. I will resort to my top of the line medicine, or as I say, “the cure all”. I will get on the net and look up funny videos and starting laughing and snorting till I am coughing up tons of mucus and I feel tons better.J
My mom was told more than once by doctors that I would not live past 2 and if I did there would be no way it would a “normal” life, My mom didn’t listen to them she let my brother and I play baseball, basketball, track, girl scouts and whatever else we wanted to do we got dirty making mud cakes, and we got plenty in trouble at school and home. She never treated us different and didn’t let anyone else either. I am now looking at the age of 29 in only 5 months and I am doing incredibly well. My fighting and positive attitude is what helps me the most. We are all in this together. I am not going to quit, I’m not stopping, I may bend but I will not break. I am determined to find a cure in my lifetime. This is for the future CFers.
Let us together have CF stand for “Cure Found”. God bless ya’ll and thank you for taking time to read this.
I would like to take a moment to Thank Ronnie for this opportunity to be able to speak out about my story. I began reading Ronnie’s blog a few months ago, I just fell in the love with his passion for reaching out to fellow CFers and his drive to make a better tomorrow for himself and others around him. I knew I wanted to a part of it somehow. So each day I became inspired, motivated and ready to take on the world.
When first asked to do this, I really didn’t know what to talk about. As all of you know, CF isn’t one-sided. We all have the battle scars to prove that.
Note from Ronnie: I just wanted to give a big thank you to Destiny for writing an outstanding guest post for RSR. She is a great example of a CFer who decided that "enough was enough" and to take CF head-on. We may face some pretty daunting obstacles but through a little bit of hard work and perseverance, we CAN have some control over this disease. Please leave Destiny your encouraging comments as well as any questions you may have! You can find her on Facebook, Twitter @InhalingLife and www.InhalingLife.com.
If you are interested in writing a guest post for RSR simply send me an email with a little bit about yourself and what you'd like to write about.
Question 1. In your blog you often mention your body, or parts of your body. You talk about running to keep your body healthy, you talk about feeling pain, fatigue, feeling out of breath and you talk about pushing through those feelings to go running or walking to stay healthy. Your most recent posts have been about getting your body healthy, about how the different drugs are making your body feel, concerns about how they might affect your body and so on.
I am interested in finding out how people with CF experience their bodies. Not symptoms of CF but the thoughts, feelings, and ideas about your body that having CF and also dealing with CF in everyday life brings up for you.
For example, I have some problems in my neck and shoulders and it has really changed the way I see my body, and not only that, but my outlook on life. I thought it was strong and would last forever and all i had to do was feed it and sleep. Now I know that you can't rely on anything to stay the same or be what you expected. I know your body is something you have to care for. Sometimes I feel angry, sad or frightened when I am in pain and can't sleep or do my work. I feel frustrated and disappointed when it interfere with my plans. Sometimes I feel excited because I think my body is teaching me important lessons about life - how you can't put too much store in plans for the future for example. So these are some of the thoughts, feelings and ideas that my body brings up for me.
Bio: I am an Australian health researcher and have been doing research with people with CF since 2006. I do social research, not the treatments or laboratory research, which aims to understand about people's lives, their experiences and perspectives. My current project is my PhD in which I am trying to understand the experience of being an adult with CF. The idea is to gather, in a 'scientific' kind of way the sort of information that can give doctors, nurses, policy-makers and so on an insight into the more personal aspects of managing and living with CF in adulthood as opposed to the medical bits. I hope this sort of research will eventually lead to more appropriate treatments, better relations with medical professionals, better health policy and community support. I have contacted Ronnie to help me thrash out some of the ideas that are coming up in my researchSo, what do you guys think? Do you have any answers to "how you experience your body" as a result of CF?
A U.S. Food and Drug Administration advisory panel on Thursday said it found Gilead Sciences Inc's (GILD.O) aztreonam was an effective new treatment for life-threatening lung infections in cystic fibrosis patients.
The drug won marketing approval in September in Europe and Canada under the brand name Cayston.
The anti-infective drugs panel's finding on a vote of 15-2 that the drug is safe and effective serves as a recommendation that the FDA approve the drug. While the agency is not required to follow an advisory panel's recommendation, the panel's opinion carries great weight.
The panel said the safety and efficacy involved a 75 milligram dose administered three times a day to aid in improvement of respiratory symptoms and lung function.
Cystic fibrosis is an inherited chronic disease that affects the lungs and digestive systems of about 70,000 people worldwide, according to the Cystic Fibrosis Foundation. A defective gene and the protein it produces cause the body to produce thick, sticky mucus that clogs the lungs, leads to life-threatening lung infections and obstructs the pancreas.
Azteronam is designed to treat lung infections in these patients caused by common pseudomonas aeruginosa bacteria, for which there are few inhaled antibiotics available.
Aztreonam sales could reach at least $200 million globally by 2015, according to Summer Street Research analyst Carol Werther. The medicine could strengthen Gilead's pulmonary franchise but pales in importance when compared with its stable of HIV drugs, Werther said.
Dr. Bruce Marshall of the Cystic Fibrosis Foundation urged FDA to approve the drug swiftly and told the panel: "There is a desperate need for additional inhaled antibiotics."
Drug resistance is a complication in treatment for these patients.
I had a first this last week. It was the first week I ever dated myself while on my period. "WHAT ARE YOU TALKING ABOUT??" you ask? Let me explain...
My brother, Josh, dad and I all ran (not together though because they run WAY faster). So we all got up at 5:30, got dressed, ate a few pieces of toast with honey on it, and got pumped with the music blaring in my parents apartment (I'm sure their neighbors loved us). We headed out at 6:30 for the start line. When we pulled off, there was a fury of activity. Teams of people jogging, jumping, anxiously waiting. Josh, Dad and I did a quick jog down a side street (I popped a squat because I knew I would never be able to hold it and there were no port-a-potties in sight). We jogged back, and jumped the gate where everyone was lined up. We all stood stretching and chatting with my Uncle Scott and mom until we heard the Chinese national anthem being played. We got quiet as all the runners sang along with their national anthem and then in words I didn't understand, they announced the race was starting. Off we went, walking. It was too packed in their to actually run at first, but as we crossed the actual starting line we were able to break into a run.
Josh and Dad were out of eye shot within the first few minutes and then it was just me, my ipod and my self-talk. I kept my mind busy by singing along with songs, making a note of the funny things I saw, and yelling at myself in my own head. I was passing a good number of people, which felt awesome and made me feel like I was off to a good start, but my cockiness would soon be shattered when I would see the least athletic looking Chinese woman speed walking by me or a 4 ft 5 in. barefoot man pass me. I had no clue how fast I was running, but I felt like I was moving at an ok pace. At about 12km my mom and uncle were there and ran beside me for a few minutes. My uncle said, "you're moving at a good pace, you're just about 5 minutes behind Josh and your dad." To which I responded, "really? They must be hurting" (because something had to be wrong if I was that close to them). He said they looked great. That gave me a little hope that I was maybe moving at a good pace. My first indication of my pace was when I saw a sign that said 15km and had a time on it of 1:28:05. I thought to myself, "awesome, that means my pace is....shoot, how many km are in a mile??" Then it began, the mental math that lasted the last 30 minutes of the race. Wondering how far I had left to go. Each km marker I would calculate using the logic, "well if a 5K is 3.2 then a 10K is a 6.4 and that means...." Some of you know, that's WRONG. When I got to km marker 20 I thought ok good, just 4 minutes left. WRONG. I had gotten my numbers wrong, so as what felt like 4 minutes came and went and my legs were hurting more than I could bare I was ticked. "How much farther is it??? Am I totally off in my calculations? I can't be too far off!!" I decided ok, I'll just walk for one second or at least run SLOWLY. As I slowed down to a jog, I felt a man push on my back and say something in Chinese. I looked over and he said something again, still with his hand pushing me. I said thank you a few times in Chinese and he smiled. I realized I was actually not that far from the end. So I pushed it. I finally saw the finish and pushed it even harder. I saw 2:06:something on the clock and was happy. I just wanted to finish under 2:10 and I did. Not to mention I didn't start at the time the race clock started, so I knew I had done even better than that.
