Haley's Surgery To Breathe Again!
Donation protected
I am asking for funds to help me pay for a Dilation surgery for my newly diagnosed Idiopathic Subglottic Stenosis. My insurance is not accepted by the only specialist around and I need help to be able to breathe again. Please help.
Here is my story
It all started around February 2014. I started feeling like I couldn't breathe during seemingly small tasks. I learned I was pregnant with our daughter shortly after the shortness of breath began and asked my doctor about it. I was told that it was pregnancy induced asthma and that it would subside after pregnancy. I was given an inhaler and sent on my way. The inhaler didn't work. My pregnancy progressed, I was given different types of inhalers that didn't work either. Giving birth was difficult on many levels, but not being able to take a breath when the doctor said, "breathe through the pain" made for a tough delivery. At least, I thought, I'll be able to breathe again after giving birth. Unfortunately that thought was wrong. Although I did feel some relief, I never felt normal. Going up a flight of stairs was like running a mile. Loading the baby into the car was like doing 50 jumping jacks. Simple everyday tasks became mountains that I had to climb. I was told that I should just wait until I was a year removed from pregnancy and it will normalize. Well, to our surprise I was pregnant again with our son a short 9 months after Charli Sue was born. My breathing got worse. Doctors kept blaming it on pregnancy and I couldn't seem to explain to them that I could tell that the reason I couldn't breathe wasn't because of my lungs but because of my throat. It felt like I was constantly breathing through a straw. Pregnancy came and went and I was still short of breath. I finally saw an ENT during the fall of 2016 who did full allergy testing, CT scans of my head, neck, chest, and sinuses, and an echo of my heart and everything came back normal. Life went on and got harder. "Good" days were few and far between, but I still felt short of breath on those so-called "good" days. I was just learning to live life despite my short comings. I started feeling more helpless and hopeless as time went on. This could be a picture of the rest of my life. I would never be able to play tag with my kids, I would never be able to teach my kids to play basketball or volleyball. I would never be able to sing (well) again or dance at a wedding. It's been nearly 4 years and I finally have an answer. I came across something on line and it explains all of my symptoms! Idiopathic Subglottic Stenosis. Narrowing of the airway. There's a specialist at UT Southwestern. I walked in and explained my symptoms and before she even tested me she knew that I had it. The scope showed that I had 50% narrowing on my airway just below my vocal cords. I broke down in tears. I finally had an answer! Someone knows what is wrong with me and I finally know what I am fighting.
I can have a procedure done to correct it called a Dilation of the airway, but it will narrow again. It is not a permanent solution. Based on the average airway patient, I can plan on needing a Dilation every 6 months for the rest of my life. I'm feeling a little torn. On one hand, I'll finally get some relief. On the other hand, I will never be cured.
Here is my story
It all started around February 2014. I started feeling like I couldn't breathe during seemingly small tasks. I learned I was pregnant with our daughter shortly after the shortness of breath began and asked my doctor about it. I was told that it was pregnancy induced asthma and that it would subside after pregnancy. I was given an inhaler and sent on my way. The inhaler didn't work. My pregnancy progressed, I was given different types of inhalers that didn't work either. Giving birth was difficult on many levels, but not being able to take a breath when the doctor said, "breathe through the pain" made for a tough delivery. At least, I thought, I'll be able to breathe again after giving birth. Unfortunately that thought was wrong. Although I did feel some relief, I never felt normal. Going up a flight of stairs was like running a mile. Loading the baby into the car was like doing 50 jumping jacks. Simple everyday tasks became mountains that I had to climb. I was told that I should just wait until I was a year removed from pregnancy and it will normalize. Well, to our surprise I was pregnant again with our son a short 9 months after Charli Sue was born. My breathing got worse. Doctors kept blaming it on pregnancy and I couldn't seem to explain to them that I could tell that the reason I couldn't breathe wasn't because of my lungs but because of my throat. It felt like I was constantly breathing through a straw. Pregnancy came and went and I was still short of breath. I finally saw an ENT during the fall of 2016 who did full allergy testing, CT scans of my head, neck, chest, and sinuses, and an echo of my heart and everything came back normal. Life went on and got harder. "Good" days were few and far between, but I still felt short of breath on those so-called "good" days. I was just learning to live life despite my short comings. I started feeling more helpless and hopeless as time went on. This could be a picture of the rest of my life. I would never be able to play tag with my kids, I would never be able to teach my kids to play basketball or volleyball. I would never be able to sing (well) again or dance at a wedding. It's been nearly 4 years and I finally have an answer. I came across something on line and it explains all of my symptoms! Idiopathic Subglottic Stenosis. Narrowing of the airway. There's a specialist at UT Southwestern. I walked in and explained my symptoms and before she even tested me she knew that I had it. The scope showed that I had 50% narrowing on my airway just below my vocal cords. I broke down in tears. I finally had an answer! Someone knows what is wrong with me and I finally know what I am fighting.
I can have a procedure done to correct it called a Dilation of the airway, but it will narrow again. It is not a permanent solution. Based on the average airway patient, I can plan on needing a Dilation every 6 months for the rest of my life. I'm feeling a little torn. On one hand, I'll finally get some relief. On the other hand, I will never be cured.
Organizer
Haley Rude
Organizer
Fort Worth, TX
