May 14, 2019 - Update
My husband started this campaign for me 22 months ago to help raise money for 2 lung procedures I need that insurance won’t cover, even though it’s the insurance company’s fault I got sick in the first place. The two lung procedures I need are called Bronchothermoplastys (BT). It’s a three part procedure (I had the first one done 4 years ago) and I still need the last two parts.The problem is that I have to pay out of pocket for them b/c the insurance company will not pay for them. Please read my whole story from my original post so you can understand more in depth what was done to me and how hard we’ve been fighting the insurance companies.
I’m writing again b/c my health has declined significantly since my last post and it’s gotten really bad in the last few months. It is imperative that I have these procedures done, and time is of the essence. I am still on 20 mg of prednisone (a medication steroid for my lungs that helps me breath) which is now effecting my heart. My cardiac output dropped from 57% down to 51% in just 6 or 7 months. I had no idea that prednisone could effect your heart in this way if taken long term. The doctors have been trying to wean me off the steroids for 4 years now but I cannot get below 20mg. I am an ICU nurse who was forced to quit working b/c I couldn’t breath.This was crushing to me b/c I loved taking care of others. I’ve been on the steroids for 4 years now. Prednisone (the steroid for my lungs) is a medication that is supposed to be used for a short amount of time, not years! But it is the only thing that has kept me breathing. These procedures will let the doctors wean me off the prednisone.
So along with the steroids affecting my heart, it has affected my bones. I now have osteoporosis in my hip and spine pretty bad, and I’m only 37! I also have the classic symptoms associated with long term prednisone use like a weak immune system, and many many more side effects. I recently found out that I have 3 large tumors and a bunch of smaller tumors all over my thyroid. I had an abnormal biopsy come back from the one tumor they tested. I went to see a thyroid specialist and he said that if my lungs were better, he would send me to get the whole thyroid taken out right away. But the specialist says I need to have the BT’s on my lungs done first b/c he fears I won’t do good in the thyroid surgery if he tried to take it out first.
If I could afford the BT’s I would have had them 4 years ago! They are around $20,000 each out of pocket, and the hospital won’t let me make payments since it is an elective surgery. We sold our house and moved to get some money to put towards the surgeries. I recently came to the decision that I needed to take out what little retirement I saved in my 401K to put towards the second BT, b/c it occurred to me that what good is a retirement fund if I’m not going to live long enough to use it. My lung doctor and I have been fighting with the insurance companies for 4 years trying to get these procedures at least partly covered with no luck even though the first part of the BT helped me wean from a very high dose steroids down to 20mg. We have the proof that the first treatment worked for me. We have exhausted all other options as have our friends and family including with the media, writing to our congressmen, newspapers, talk shows, legally, and fund raisers. I personally have been selling jewelry and cards that I make, but after 4 years, it’s still not enough! So here I am again asking for help from friends, family, and strangers, and I still hate having to ask for it. I can never thank everyone enough for the prayers, donations, sharing my story on their facebook pages and all the other things that have been done for me. I am a fighter and I will never give up fighting even though my body is trying to do just that. All this pain and suffering I’ve gone through the last four years will have been for nothing if I can’t get better and help others fight for their lives too.
June 25, 2017
The last thing I want to do is ask people for money, but I no longer have a choice. This is my story. It is a personal and painful story. It is not a story that I ever planned on telling anyone but my close friends and family. My story begins in Jan. 2014 when my insurance company refused to pay for the asthma medication, Advair, that I had been on for 15 years. They wanted me to switch to Symbicort, a medicine that was proven to be ineffective in controlling my asthma in the past. The doctor even called the insurance company to tell them that I needed my Advair, but they still refused to cover it. I did not have the money to pay for my Advair, so I reluctantly took the Symbicort. I ended up with bronchitis and then pneumonia which did damage to my lungs. After 4 months, my Grandma then was able to get the money together, which was over $1,500, to pay for my Advair.
Before I got sick, I worked in a level one trauma center/ICU as an RN. As you can imagine, it was a physically demanding job, but I was able to do it. I was in my early 30’s and had asthma since I was a child. My asthma was well controlled with the medication Advair, and I only had to use my rescue inhaler approximately twice a month. With the Symbicort however, I needed to use my rescue inhaler several times a day. My pulmonologist had to start me on high doses of prednisone to try to control my asthma. At one point I was on 80mg of prednisone, which is an extremely high dose. I was no longer able to do my job as an ICU nurse because I couldn’t even walk down the hall without going into respiratory distress. In August 2014 I had to resign from a job that I not only loved, but I felt called to do. I worked really hard to earn my degree and I was devastated that my body could no longer do what my mind wanted it to. It got so bad that I could barely walk to the end of my bed to use a portable toilet without doing a breathing treatment as I walked.
My pulmonologist then told me about a new procedure, that was approved by the FDA in April 2010, called Bronchial Thermoplasty, that could possibly help me breath better. He said it was a three part surgery that would decrease the thickened muscles around my bronchial tubes so they could no longer squeeze and restrict my breathing, thereby reducing my body’s need for the harmful steroids. He scheduled it right away and within a few days I had the 1st procedure done. That was November 10th 2014.
I’m not going to lie, it was really painful to breath at first. A week after surgery I started to notice that my breathing seemed a little easier. After a few weeks the doctor was able to wean my prednisone from 80mg daily to 40mg daily. The procedure had worked. I was able to get around better, and could walk to the bathroom without needing a constant breathing treatment. Once I recovered from the first procedure it was time to get the second part of the Bronchial Thermoplasty. The doctor scheduled it but the insurance company denied coverage for the surgery. It turns out that my doctor knew that there was a good chance that my insurance company would refuse to pay for the procedure and did the first part for free. He literally saved my life.
The insurance company refused to pay for a surgery that I only needed because they refused to pay for my asthma medicine in the first place. This just seemed criminal to me. They did this to me and now they won’t pay to fix it. How could this be possible? The first denial letter the insurance company sent me said that they denied it due to the procedure being experimental. However, the procedure was no longer experimental, and they had proof that the first part helped me significantly. To make this long story as short as possible, I ended up going through three different insurance companies and got 12 denial letters. The last letter I received literally said that even though my quality of life was now poor, they would not cover the surgery even if it were to save my life. So they would be fine letting me die as long as they didn’t have to cover the procedure. They did this to me. They robbed me from a life that I thought I was going to have. I couldn’t even think about doing the normal things that most of the people my age are able to do.
I was robbed of my job, the limited time span a woman has to conceive a child, and my health. You see, I’m still on the steroids 3 years later. Every time the doctor tries to wean me off of the prednisone, I get bronchitis. The long term steroid use has reeked havoc on my body. Along with weight gain, a weakened immune system, acne, hot flashes, and anxiety, I now have steroid induced osteoporosis. They said that I have the bone density of a 70 year old woman.
The money that I am attempting to raise is to cover the cost of the two remaining portions of the Bronchial Thermoplasty surgery. The hospital has estimated the cost for these to be more than $20,000 a piece. With this campaign, I am hoping to raise a large portion of what is needed to cover the costs for both portions of the surgery.
Like I said, I didn’t want to have to ask other people to help me pay for my surgeries. There are thousands of people on here who need the same surgery as I do, for the same reasons I need it. If you can’t help out financially, I completely understand. Will you please just pass my story on to the people you know? I am no longer going to stand by and let the insurance companies continue to do this to people, but I recognized that I need to take care of myself first before I can help others, which is extremely hard for me to do. After I get my surgeries done, I am going to fight for all the other people who need the same procedures. I most likely will never be able to be an ICU nurse again, but I am never going to stop helping others in any way I can.
Thank you for listening to my story.
My husband started this campaign for me 22 months ago to help raise money for 2 lung procedures I need that insurance won’t cover, even though it’s the insurance company’s fault I got sick in the first place. The two lung procedures I need are called Bronchothermoplastys (BT). It’s a three part procedure (I had the first one done 4 years ago) and I still need the last two parts.The problem is that I have to pay out of pocket for them b/c the insurance company will not pay for them. Please read my whole story from my original post so you can understand more in depth what was done to me and how hard we’ve been fighting the insurance companies.
I’m writing again b/c my health has declined significantly since my last post and it’s gotten really bad in the last few months. It is imperative that I have these procedures done, and time is of the essence. I am still on 20 mg of prednisone (a medication steroid for my lungs that helps me breath) which is now effecting my heart. My cardiac output dropped from 57% down to 51% in just 6 or 7 months. I had no idea that prednisone could effect your heart in this way if taken long term. The doctors have been trying to wean me off the steroids for 4 years now but I cannot get below 20mg. I am an ICU nurse who was forced to quit working b/c I couldn’t breath.This was crushing to me b/c I loved taking care of others. I’ve been on the steroids for 4 years now. Prednisone (the steroid for my lungs) is a medication that is supposed to be used for a short amount of time, not years! But it is the only thing that has kept me breathing. These procedures will let the doctors wean me off the prednisone.
So along with the steroids affecting my heart, it has affected my bones. I now have osteoporosis in my hip and spine pretty bad, and I’m only 37! I also have the classic symptoms associated with long term prednisone use like a weak immune system, and many many more side effects. I recently found out that I have 3 large tumors and a bunch of smaller tumors all over my thyroid. I had an abnormal biopsy come back from the one tumor they tested. I went to see a thyroid specialist and he said that if my lungs were better, he would send me to get the whole thyroid taken out right away. But the specialist says I need to have the BT’s on my lungs done first b/c he fears I won’t do good in the thyroid surgery if he tried to take it out first.
If I could afford the BT’s I would have had them 4 years ago! They are around $20,000 each out of pocket, and the hospital won’t let me make payments since it is an elective surgery. We sold our house and moved to get some money to put towards the surgeries. I recently came to the decision that I needed to take out what little retirement I saved in my 401K to put towards the second BT, b/c it occurred to me that what good is a retirement fund if I’m not going to live long enough to use it. My lung doctor and I have been fighting with the insurance companies for 4 years trying to get these procedures at least partly covered with no luck even though the first part of the BT helped me wean from a very high dose steroids down to 20mg. We have the proof that the first treatment worked for me. We have exhausted all other options as have our friends and family including with the media, writing to our congressmen, newspapers, talk shows, legally, and fund raisers. I personally have been selling jewelry and cards that I make, but after 4 years, it’s still not enough! So here I am again asking for help from friends, family, and strangers, and I still hate having to ask for it. I can never thank everyone enough for the prayers, donations, sharing my story on their facebook pages and all the other things that have been done for me. I am a fighter and I will never give up fighting even though my body is trying to do just that. All this pain and suffering I’ve gone through the last four years will have been for nothing if I can’t get better and help others fight for their lives too.
June 25, 2017
The last thing I want to do is ask people for money, but I no longer have a choice. This is my story. It is a personal and painful story. It is not a story that I ever planned on telling anyone but my close friends and family. My story begins in Jan. 2014 when my insurance company refused to pay for the asthma medication, Advair, that I had been on for 15 years. They wanted me to switch to Symbicort, a medicine that was proven to be ineffective in controlling my asthma in the past. The doctor even called the insurance company to tell them that I needed my Advair, but they still refused to cover it. I did not have the money to pay for my Advair, so I reluctantly took the Symbicort. I ended up with bronchitis and then pneumonia which did damage to my lungs. After 4 months, my Grandma then was able to get the money together, which was over $1,500, to pay for my Advair.
Before I got sick, I worked in a level one trauma center/ICU as an RN. As you can imagine, it was a physically demanding job, but I was able to do it. I was in my early 30’s and had asthma since I was a child. My asthma was well controlled with the medication Advair, and I only had to use my rescue inhaler approximately twice a month. With the Symbicort however, I needed to use my rescue inhaler several times a day. My pulmonologist had to start me on high doses of prednisone to try to control my asthma. At one point I was on 80mg of prednisone, which is an extremely high dose. I was no longer able to do my job as an ICU nurse because I couldn’t even walk down the hall without going into respiratory distress. In August 2014 I had to resign from a job that I not only loved, but I felt called to do. I worked really hard to earn my degree and I was devastated that my body could no longer do what my mind wanted it to. It got so bad that I could barely walk to the end of my bed to use a portable toilet without doing a breathing treatment as I walked.
My pulmonologist then told me about a new procedure, that was approved by the FDA in April 2010, called Bronchial Thermoplasty, that could possibly help me breath better. He said it was a three part surgery that would decrease the thickened muscles around my bronchial tubes so they could no longer squeeze and restrict my breathing, thereby reducing my body’s need for the harmful steroids. He scheduled it right away and within a few days I had the 1st procedure done. That was November 10th 2014.
I’m not going to lie, it was really painful to breath at first. A week after surgery I started to notice that my breathing seemed a little easier. After a few weeks the doctor was able to wean my prednisone from 80mg daily to 40mg daily. The procedure had worked. I was able to get around better, and could walk to the bathroom without needing a constant breathing treatment. Once I recovered from the first procedure it was time to get the second part of the Bronchial Thermoplasty. The doctor scheduled it but the insurance company denied coverage for the surgery. It turns out that my doctor knew that there was a good chance that my insurance company would refuse to pay for the procedure and did the first part for free. He literally saved my life.
The insurance company refused to pay for a surgery that I only needed because they refused to pay for my asthma medicine in the first place. This just seemed criminal to me. They did this to me and now they won’t pay to fix it. How could this be possible? The first denial letter the insurance company sent me said that they denied it due to the procedure being experimental. However, the procedure was no longer experimental, and they had proof that the first part helped me significantly. To make this long story as short as possible, I ended up going through three different insurance companies and got 12 denial letters. The last letter I received literally said that even though my quality of life was now poor, they would not cover the surgery even if it were to save my life. So they would be fine letting me die as long as they didn’t have to cover the procedure. They did this to me. They robbed me from a life that I thought I was going to have. I couldn’t even think about doing the normal things that most of the people my age are able to do.
I was robbed of my job, the limited time span a woman has to conceive a child, and my health. You see, I’m still on the steroids 3 years later. Every time the doctor tries to wean me off of the prednisone, I get bronchitis. The long term steroid use has reeked havoc on my body. Along with weight gain, a weakened immune system, acne, hot flashes, and anxiety, I now have steroid induced osteoporosis. They said that I have the bone density of a 70 year old woman.
The money that I am attempting to raise is to cover the cost of the two remaining portions of the Bronchial Thermoplasty surgery. The hospital has estimated the cost for these to be more than $20,000 a piece. With this campaign, I am hoping to raise a large portion of what is needed to cover the costs for both portions of the surgery.
Like I said, I didn’t want to have to ask other people to help me pay for my surgeries. There are thousands of people on here who need the same surgery as I do, for the same reasons I need it. If you can’t help out financially, I completely understand. Will you please just pass my story on to the people you know? I am no longer going to stand by and let the insurance companies continue to do this to people, but I recognized that I need to take care of myself first before I can help others, which is extremely hard for me to do. After I get my surgeries done, I am going to fight for all the other people who need the same procedures. I most likely will never be able to be an ICU nurse again, but I am never going to stop helping others in any way I can.
Thank you for listening to my story.