Thursday, March 7th was an ordinary day. I had my Foundations of Baking class at Jefferson State that morning till afternoon like usual, then my Nutrition class. Thursdays are normally a long day for me, starting about 8:30am till about 7:30pm with a couple hours break in between. A group of girls that I go to school with all have this schedule so we suck it up together each week and try to make it fun. That Thursday we made a lot of sticky buns in Bake Shop because there was a breakfast conference with the President of the school the next day. We sang Disney tunes as we cleaned up, it was a good day.
That night, feeling a little restless, I ended up having dinner with a friend at Bottega. Thursdays are like my Fridays, as that ended my classes for the week so it was nice to get out and have a nice dinner to end the week. The next day I had looked forward to seeing Captain Marvel, just like everyone else. But over the course of the night, those plans had changed.
I woke up the next morning not being able to breathe. I luckily have a O2 monitor at my place and immediately put it on. The number read 64. I felt dizzy and tried to concentrate to look at it again because I thought I was misreading it, I wasn’t. (Let me also note that a normal O2 is between 95-100). I started to panic as I couldn’t breathe and I knew what my number was. I was alone at my apartment with my dogs and I couldn’t even have breath to speak, so I texted my mother and I honestly don’t even remember what I said, but my parents immediately got to my apartment and called 911 for an ambulance to take me to UAB. My mother later told me I was lethargic and couldn’t concentrate or talk or anything when she got there.
Now, I, for the past 26 years have dealt with having chronic pulmonary issues throughout my life, a lot of you know this but a lot of you do not know the full details, so I’ll give it briefly. When I was nine, I had pneumococcal pneumonia with a staph infection that almost killed me. I was put on ECMO, which was very new and experimental on newborns with underdeveloped lungs, not obviously on 9 year old kids at the time. It was one of the many things that saved my life and if it wasn’t for Children’s Hospital having that back in 1993, I would not have survived. It amazes me today how much it is used and how even portable it is for everyone now. My case was so rare that even the inventor, the pioneer of ECMO, Dr. Robert Bartlett, flew from the University of Michigan to see me once I was on the road to recovery. I have been in medical journals, even played the role of NBC’s Children’s Miracle Network Telethon poster child for several years afterwards. There was even a video with Jerry Tracey and Pam Huff that told my story every year to raise money for the hospital.
I was able to finish school with my classmates and was not held back, even having two lobectomies, removing my lower right lobe in 1996 and my middle right lobe my senior year in 2002. But I was able to graduate and walk across that stage with everyone else. I attended UAB to be close to home and got a degree in Art History, where I worked at an Art Gallery then became an artist on my own. However, during these years, I would have slip ups of infections that would keep me in the hospital from time to time. But it was something that I managed and dealt with, it was never something that defined who I was. I did (and do) a lot of things here in Birmingham, a city that I truly love. I am an artist, a food crafter, a writer, a film nerd, an animal lover, a volunteer and now after years of wanting to be, a culinary student. These were the things that made me who I am. Not my chronic illness. But this particular hospital visit changed my perspective on that.
For years after I got “kicked” out of Children’s Hospital at age 25, I was moved to the Pulmonary unit at Kirklin Clinic. I have had the same pulmonary doctor for the past 9 years who I have loved dearly. However, I only saw him twice a year for check ups and unless I got sick or infection, there again would be that routine of going to the ER, waiting for a room, getting IV antibiotics for at least a week, then I would normally fight them to come home on IV therapy because no one wants to stay at a hospital. This was my routine. It had been for the past 10 years. But this new scare that happened, where they thought I had a blood clot or even the phrase “heart attack” was thrown out there at one point, my perception started to change and questions started to arise.
My pulmonary doctor made the recommendation once he knew I was at admissions to contact the Adult Cystic Fibrosis Team at UAB. Instead of seeing the random Pulmonary doctors that happened to be tagged to my case as per usual, I saw the new CF team at UAB. I got to know them well over the course of the two week period I was there getting the IV antibiotics (that apparently I kept having an allergic reaction to, so IV Benadryl was a friend of mine). But also trying new therapies, such as hypotonic solution (salt water) in my aerosol treatments, to a new percussion therapy that I used twice a day to help keep my lungs clear.
Having two weeks to think is a long time. Especially when you can’t get much sleep at the hospital and especially when you’re stuck in a room most of the day. So I wondered. Why did it just now take this long for my pulmonary doctor of 9 years to make that phone call to the CF team if he thought I needed it? That was a question I could not find an answer to, nor me asking the team themselves had an answer.
One of the team members who I had gotten to know quite well, told me by looking at my lung function numbers that I was 2% above being on a transplant list. Yes, a transplant list. Something I thought I would never hear anyone say because it was never thought of as something to worry about. If that doesn’t hit reality on making changes, then I don’t know what does and sometimes that means firing a doctor of 9 years and doing what is best for you as I did right there on that day and welcomed my new team.
When I started culinary school last semester, I’m not going to lie, it kicked my ass. It took everything I had to get through each week’s lab and I knew then, that I had to up my self care big time if I was going to get through school. So I had been working on that and was more aware of taking better care of myself, so again, being in the hospital, finally meeting the team who could finally get me my own program of therapies to not just make me feel like I’m managing this illness, to making me feel like I finally have some CONTROL on how I feel with this chronic illness is something I have never had the chance to do. I finally feel optimistic for the first time ever. Because throughout my life, I was always told or it was assumed that this is just the cards I was dealt with and I had to do what was best on how to deal with it. Well, screw that. Not anymore.
In speaking to the team, I told them how it made me feel, feeling I had wasted these years when I could have been on these therapies this entire time. Who knows where my life would be or how I would feel if that had happened? Again, answers that I will probably never know. They did however, tell me that I entered this at an especially good time because there is new research happening with possible new treatments and even new drug trials, which I gladly raised my hand and said, “Sign me up”. If there is anything I can do to prolong or have better quality of life then I’m going to do it and I’m so very thankful to have a new kickass team at UAB who I will know each time I go in and they will know me and if I ever do need IV treatment, it can even be in the comfort of my own home and I will NEVER set foot inside the ER again as I did this time spending more than 12 hours there before getting a room. If I need to stay at the hospital, I have the option to not even go to UAB until they physically have a room available. When I was told I now have these options, I was stunned, it almost brought me to tears. But I am also very thankful. I am thankful to having doctors who now understand my situation and will accommodate to my needs. It only took 9 years.
This also affects what is recently in the news, that millions of people will be cut off their healthcare and also be cut off for having pre-existing conditions. This is simply just evil. Soon you or someone you know will not have access to their healthcare. Our government is using the court system to terminate the ACA and allow millions to be denied coverage for their basic daily medications, treatments and pre-care. It is in our basic human rights to have healthcare in our country. We are the only country who has this issue. I hope in the 2020 election season, that healthcare will be one of the top issues. I know it will be a major one to me.
In talking about healthcare, let’s not also forget our healthcare workers. I am so grateful for all the UAB staff, doctors, nurses, my new CF team, even down to the janitorial staff who cleaned my hospital room everyday. We need to thank those people because they do not get enough credit for what they do. They work long hours, away from their families to take care of people like me. I met a young woman named Valerie who cleaned my room and mopped my floors everyday. We got to talking about things and she mentioned she was one week away from getting her one year chip for being sober. I congratulated her and she mentioned that since she’s a UAB employee, she gets to go to school for free and wants to eventually be a drug counselor to help other people like her. When you spend time in the hospital, you meet a lot of people, some patients tend to mostly ignore getting to know them or even telling them “thank you” when they leave. Even if it’s getting the trash out of your room. I made an effort to know my nurses and respiratory therapists who took care of me each day, some I had multiple times which was nice and comforting. But I always, always, no matter who they were or what they did, wither it was the student still in school taking vital signs every few hours, to my nurses who gave my treatments, or to Valerie who cleaned my room, I always said “thank you.” Because sometimes it’s the most simple phrase that can mean so much. I hope this is a reminder to continue to do that.
I also did some research on social media with people with cystic fibrosis or pulmonary chronic illnesses or bronchiectasis and seeing them post their day to day life, wither it be being in the hospital or getting tests done or just being at home. I even started to share some myself as I was in the hospital just to give everyone out there an update. It made me see that I’m not the only person living with this. There are thousands who live with this everyday and if telling my story helps anyone, especially letting them know that there are options out there and you are not stuck like I was, then I would feel like I’ve done my job in helping someone who could have helped me.
Hello, my name is Christy Turnipseed, I am a 35 year old survivor of chronic pulmonary bronchiectasis being treated as a Cystic Fibrosis patient living day to day to my fullest and sharing what I can to help others know that they’re not alone and you can still live your dreams, as I am going to someday complete mine and finish Culinary School.
UPDATE: Since writing this, I have had my CF sweat test done and I am “Borderline” CF, so they are doing genetic testing to see what more they can find. So I guess you can say, I’m a 35 year old survivor of chronic pulmonary bronchiectasis now Borderline CF patient.
I’m a girl that likes the pork, eggs, homemade soups..vintage books and children’s books, artists who love what they do, writers/bloggers who inspire me, and good food and music with fabulous people to share it with.