I want to introduce to you to a lovely lady who I met through my oxygen Instagram account. It was amazing to get to know her and I am so excited to share her story with all of you. She is a true fighter and even has her own line of jewelry to raise support for her disease. This amazing girl is Kayla, who is 24 years old and has been living on oxygen 24/7 for 3 and half years and this is her story.
Q: What is your story? How were you diagnosed and what was the diagnosis?
A: I got diagnosed with Pulmonary Hypertension about 3 ½ years ago at the age of 20. Pulmonary Hypertension is a rare lung disease and it has no cure, but can be stable with medication and sometimes supplemental oxygen. Pulmonary Hypertension is high blood pressure in the arteries of the lungs and that affects the heart because it doesn’t get enough oxygen. The doctors don’t know exactly what caused my Pulmonary Hypertension. I have had many health problems since birth, but they subsided over the years. This diagnosis came out of nowhere and I had to create my “new normal”. I was in community college when I found out I have PH. It was my second year and I was just starting a new semester. One day, I was walking in the mall with my mom and all of a sudden I was gasping for air. I thought I was overheated because it was a hot summer day. So, I sat down and got something to drink and eat, after that I felt a little better. That night while I was sleeping, I woke up gasping for air. That has never happened to me before. I yelled for my mom and she came running in. We knew something was wrong, so she took me to the doctor right away. When I was at the doctor that morning, I felt weak and still out of breath. The doctor tested my oxygen level and I was in the 60s. The doctor called for the ambulance that minute and I was rushed to the ER. I was in the hospital for a week and they did a lot of tests; the one test that confirmed I have PH was the right heart cath. In the hospital they started me on a PH oral medication call Sildenafil (another name for it is Viagra). From the hospital, I was sent home with oxygen and I had to wear it 24/7. They set me up with the big in home o2 concentrator and with the 50 foot green cord. Then a couple of tanks to use when I went somewhere. I stayed home for one week from school after I got out of the hospital to rest and get use to my new diagnosis. I knew I wanted to go back to school right away because if I didn’t go back it would be like I was giving up. I wanted to stay on track with school and still be in a normal routine. I was signed up for three classes, but had to drop two of them. My dad in the meantime during my week off from school, researched about portable o2 concentrators and found the perfect one. He found the Inogen G3, that concentrator became by lifeline. I was ready to go back to school with my new best friend (aka my portable o2) and it was all bedazzled. It took a couple of months to get use to my “new normal”. For a while I kept asking my parents questions like, “why is this happening to me?” ; “How long do I need this oxygen?”. But then overtime it sunk in that this diagnosis is a part of me, but it won’t define me.
Q: How is your life different now?
A: My life now since being diagnosed with PH, is great! I am thankful that I am stable in my health right now. I am now on two PH oral medications. I am still on Sildenafil and the other one is Letairis. I’m still in school and will have my Child Development AA Degree in a year in a half. I’m really excited that I will be graduating soon, that was a big goal of mine! One thing that changed for me since being diagnosed with PH is I used to be more care free and not have to worry so much about my health. I wouldn’t have to worry about o2 running out, or taking medicine on time every day.
Q: How do you stay positive?
A: I have always been a positive person and pushed through anything that came my way. My family, friends, dogs, and God have been a great support system for me. When I was diagnosed with PH, I had never heard of this disease before. So, I knew I had to spread the awareness about it and fundraise to help find a cure. I started my own jewelry line called PHantastic Jewelry. I created a website (phantasticjewelry.com) and business cards. I make bracelets, necklaces, and earrings to spread the awareness of PH. The net proceeds go to the Pulmonary Hypertension Association. I attend craft fairs and vendor events to sell my jewelry and spread awareness of PH. I enjoy doing this because I give back and help people become more aware of this rare lung disease. I turned something that could become a negative in my life into a positive.
Q: What is something you have learned about yourself while being on oxygen?
A: Since I been on oxygen, I learned that plans you make in life don’t always go the way you expect them to. I have always been a planner, but since being diagnosed with PH and on O2. I realized I don’t have to plan for everything, it’s ok to go with the flow. I also learned that people may look at you strange because you are on o2, but if you are feeling self-conscious just remember that the O2 you are wearing is saving your life. It doesn’t matter what people think. I have to remind myself of this from time to time.
Q: What is a dream of yours to do one day?
A: One of my dreams in life is to be able to have a career that I enjoy and help children or people in some way. Another dream of mine is to have my jewelry line become well known and raise a lot of money to find a cure for PH. Another dream is to get married someday and have a husband that understands and supports me.
Q: Is there something on your bucket list that you hope to do one day?
A: I have never really made a bucket list before. But if I did, one thing I would like to do is travel to Hawaii and see sea turtles in their natural environment. Also visit the capitol of fashion, Paris!
Q: What is a fear or an insecurity that you have about being on oxygen?
A: One of the fears that I had when I first got diagnosed with PH and put on o2 was would I ever get rid of the o2. But over the years I realized that I may not get rid of the o2, but that’s ok. I remind myself that the oxygen and medication is saving my life and letting me live it. Since being on oxygen, another fear of mine is will I find love? Dating is tough in general, but when you throw in a disability that someone can see right away it becomes ten times harder. I know I will overcome this fear, it will just take time and I have to gain more confidence.
As I read her story, I was amazed at well she handled the news. She didn’t let it stop her from enjoying her life. She has risen above all the negative aspects of her disease. She has taken something that could be devastating and turned it into something positive. I love how she had a fight in her to do something about her PH. She wanted to raise awareness and help find a cure for PH. Kayla started a jewelry line called Phantastic Jewelry and the net proceeds go to the Pulmonary Hypertension Association. The jewelry is handmade and beautifully done. If you are interested in purchasing a piece of jewelry please visit www.phantasticjewelry.com . You can also follow her on her jewelry Instagram at phantastic_jewelry to see more of her inventory. Sometimes in life you get news that makes your whole world stop but it takes you taking one step forward at a time to make the world spin again. Kayla, did just that. She put one foot forward, never gave up, and is now making an impact. I hope you take on the world, Kayla.