Saving Selena Scavone
Donation protected
My name is Selena Scavone. I’m a wife, daughter, pediatric special needs nurse, and I love Jesus. I suffer from a rare form of angioedema, alongside endometriosis, asthma, diabetes, Hashimoto's disease, Graves' disease, colitis, and epilepsy. As you can see I’m no stranger to illness. I’ve probably spent more time in hospital beds than your grandmother! Yet, I am only 40 years young.
Now for those of you who are unfamiliar, angioedema is typically just painless swelling under the skin, triggered by an allergy to animal dander, pollen, drugs, venom, food, or medication. I know what you’re thinking get this girl some Benadryl!
If only it were that simple. The origin of the angioedema I am suffering from is currently unknown. Without a known culprit I go through life on pins and needles wondering what the day will bring. Will I have a mild episode in the comfort of my home or will I be rushed by ambulance to the emergency room, or worse will I be admitted to the hospital?
You see sadly for me the swelling can get so severe it causes my airway to completely shut. That’s when things get real scary because at that point I am literally fighting for my life, gasping for air, not knowing if I’ll make it through the episode alive. The most recent time this happened my husband had to bring me to the emergency room because I lost feeling in the right side of my face and of course feared a major episode coming on. Lucky for me my husband by now has developed a sixth sense for these things because after being admitted and hospitalized, the next day my throat and face began to swell to where I could not breathe. Thankfully, I was already in the hospital because at that point CPR had to be administered. Then came the really fun part! I had to be heavily sedated and a breathing tube had to be inserted down my throat, while being hooked up to a ventilator. All so I could simply breathe. Funny the little things we often take for granted…
It’s in those moments I am helpless and at God’s, modern medicine’s, and the United States health care system’s mercy. I’m not scared to go to Heaven but this isn’t exactly how I pictured life at 40. I mean After 15 years as a nurse I never thought I’d spend so much time in and out of hospital beds, I sure never saw frequent, long term hospital stays in my future. I hoped by now after 3 plus years of marriage to my wonderful husband, we’d be well on our way to buying our first home and God willing, possibly welcoming our first child. But as fate would have it I’m unemployed, chronically ill, constantly fighting for my life, with no end in sight and my poor husband is always teetering on the verge of being kicked out of med school as a result of missing so many days of class tending to me. Nope. Definitely not ideal.
December 1, 2020 was the third time in my life that I woke up in the Intensive Care Unit on life support. I’ll tell ya It’s the strangest feeling to open your eyes while still connected to a ventilator. It’s frightening knowing how near to death I came and the worst part is only 6.5 weeks prior I was waking up to the same nightmare. I’ve now been dealing with this strange illness for over a year and it seems to be getting worse and worse with no end in sight.
My husband and I have made over 30 trips to the emergency room in 2020, alone. All the while I’ve been carrying around an arsenal of epi-pens, steroids, and rescue inhalers just hoping if something unexpected happens I’ll have something with me that will give me a fighting chance at survival.
Now, all of this might sound really hectic and very trying, which it can be but to be honest the most difficult part about all of this is the doctors don’t even know what the root cause of these episodes is. Many physicians have simply told me that I should seek psychiatric care, because in their opinion they think it’s “all in my head.”
So after years in the tangled health system at the recommendation of an ER doctor I saw a very kind social worker and a psychiatrist, who prior to that day I had never met, and they both seemed to think the biggest reason I can’t get the help I need is because of my race. They revealed to me that often times black woman like me in America aren’t taken seriously when it comes to pain and illness and it was probably playing a big role in the level of care I have been receiving.
In fact 3 months ago I found out while hospitalized for an episode and unknowingly miscarrying, of all things, that my chart has been flagged as a, “high alert three patient seeking narcotics.” Which makes me think most doctors I encounter think I am simply a drug pursuing junkie. This saddens me because I know my symptoms are very real, and the pain I feel almost everyday is very real. I feel if my skin was a different shade maybe my ailments would be treated with more seriousness and importance. I simply will never know because at the end of the day I can’t change my skin tone or the minds and hearts of bigots or racists.
Now there are the doctors who I have met when my face and mouth is swelling and I look like a blowfish that say my lips looked normal to them, and have insinuated that it could just be fat deposits. Some have had the audacity to comment, “I would give anything to have your lips.” Others have flat out admitted that they just plain don’t know what’s going on and they are clueless as what to do! In fact after being discharged from ICU this past Saturday the general hospitalist who’s been over seeing my case for some time said, “I have known you since this has all started and it has been a struggle but I have no clue why your face and throat swell, we have no diagnosis. We have exhausted all medical resources. All we can do is support you.” Imagine being so sick without a remedy or cure in sight. Now that’s tough.
Now, I know by this point you are all hoping for a happy ending, like I am and the good news is there is hope for me. In October I was referred to the National Jewish Health facility in Denver, Colorado by my immunologist. This research hospital specializes in respiratory and severe vocal cord dysfunction. At the moment, our health insurance company does not want to cover the life saving treatment because the hospital is of course, out of network. So for me to have a chance at being admitted there and getting the treatment I so desperately need, at the expense of my insurance company the treatment has to be deemed medically necessary.
I mean with my throat involuntarily swelling like it does and me being in and out of ICU unable to breathe you would think any doctor would gladly sign off on this and I would be a shoe in! However the health care system in the US is a bunch of red tape and obviously not designed for the well being of all patients. So without the help of generous people like yourself, I may never even live to see the front door of the National Jewish Health facility. This is why I have decide to start this GoFundMe in an effort to get myself from where I am at to where I need to be to have a fighting chance at staying alive.
You see while battling all these life debilitating illnesses I have reluctantly filed for disability three times over the years and have been denied each time. Although, most recently I haven’t been able to work in over a year without literally being rushed to the hospital! I have applied for unemployment for the past two months and was unsuccessful as well. My dear husband is currently a grad student trying to get through a medical doctorate program, he is in his last year. At this point he is pretty much losing his mind trying to juggle school and the stress caused by my unforeseen future, alongside our financial woes as he too has tapped out all his money sources.
Needless to say our financial situation is dire right now. Even our basic financial needs , rent electricty, food, etc. are currently unmanageable at this point and the idea of being able to afford the treatment, travel, and room and board to get the care that I need seems impossible at this point without the help of the community. Money aside I also know that time is running out and I fear this angioedema is going to kill me if I don’t get help and soon. You see the healthcare system places no urgency for care for people like me, in fact sadly I imagine it’s cheaper for the insurance company if I just died.
I’m terrified, I’m exausted, I’m devastated but I’m determined and fearless because I have Jesus, a loving husabnd, a caring family, wonderful friends and a vast community who would do anything for Selena, in my corner. And that gives me more hope than i’ll ever know for the future God has planned for me.
So friends, I am begging and pleading for your help!!! Help me fight back this broken health system and help me reclaim my life!
You can do this by simply sharing this with anyone you know, that alone helps so much. And If you feel it in your heart to help contribute to my fund that’s even better! Just know that it will be going to help save my life. Anything for Selena, right???
Also, If you want to help spread awareness and contribute in one small swoop you can follow this link to get a snazzy shirt for your donation.
https://www.customink.com/fundraising/anythingforselenascavone
Many Thanks friends,
With love and hope in my heart and God on my side,
Selena Scavone
Now for those of you who are unfamiliar, angioedema is typically just painless swelling under the skin, triggered by an allergy to animal dander, pollen, drugs, venom, food, or medication. I know what you’re thinking get this girl some Benadryl!
If only it were that simple. The origin of the angioedema I am suffering from is currently unknown. Without a known culprit I go through life on pins and needles wondering what the day will bring. Will I have a mild episode in the comfort of my home or will I be rushed by ambulance to the emergency room, or worse will I be admitted to the hospital?
You see sadly for me the swelling can get so severe it causes my airway to completely shut. That’s when things get real scary because at that point I am literally fighting for my life, gasping for air, not knowing if I’ll make it through the episode alive. The most recent time this happened my husband had to bring me to the emergency room because I lost feeling in the right side of my face and of course feared a major episode coming on. Lucky for me my husband by now has developed a sixth sense for these things because after being admitted and hospitalized, the next day my throat and face began to swell to where I could not breathe. Thankfully, I was already in the hospital because at that point CPR had to be administered. Then came the really fun part! I had to be heavily sedated and a breathing tube had to be inserted down my throat, while being hooked up to a ventilator. All so I could simply breathe. Funny the little things we often take for granted…
It’s in those moments I am helpless and at God’s, modern medicine’s, and the United States health care system’s mercy. I’m not scared to go to Heaven but this isn’t exactly how I pictured life at 40. I mean After 15 years as a nurse I never thought I’d spend so much time in and out of hospital beds, I sure never saw frequent, long term hospital stays in my future. I hoped by now after 3 plus years of marriage to my wonderful husband, we’d be well on our way to buying our first home and God willing, possibly welcoming our first child. But as fate would have it I’m unemployed, chronically ill, constantly fighting for my life, with no end in sight and my poor husband is always teetering on the verge of being kicked out of med school as a result of missing so many days of class tending to me. Nope. Definitely not ideal.
December 1, 2020 was the third time in my life that I woke up in the Intensive Care Unit on life support. I’ll tell ya It’s the strangest feeling to open your eyes while still connected to a ventilator. It’s frightening knowing how near to death I came and the worst part is only 6.5 weeks prior I was waking up to the same nightmare. I’ve now been dealing with this strange illness for over a year and it seems to be getting worse and worse with no end in sight.
My husband and I have made over 30 trips to the emergency room in 2020, alone. All the while I’ve been carrying around an arsenal of epi-pens, steroids, and rescue inhalers just hoping if something unexpected happens I’ll have something with me that will give me a fighting chance at survival.
Now, all of this might sound really hectic and very trying, which it can be but to be honest the most difficult part about all of this is the doctors don’t even know what the root cause of these episodes is. Many physicians have simply told me that I should seek psychiatric care, because in their opinion they think it’s “all in my head.”
So after years in the tangled health system at the recommendation of an ER doctor I saw a very kind social worker and a psychiatrist, who prior to that day I had never met, and they both seemed to think the biggest reason I can’t get the help I need is because of my race. They revealed to me that often times black woman like me in America aren’t taken seriously when it comes to pain and illness and it was probably playing a big role in the level of care I have been receiving.
In fact 3 months ago I found out while hospitalized for an episode and unknowingly miscarrying, of all things, that my chart has been flagged as a, “high alert three patient seeking narcotics.” Which makes me think most doctors I encounter think I am simply a drug pursuing junkie. This saddens me because I know my symptoms are very real, and the pain I feel almost everyday is very real. I feel if my skin was a different shade maybe my ailments would be treated with more seriousness and importance. I simply will never know because at the end of the day I can’t change my skin tone or the minds and hearts of bigots or racists.
Now there are the doctors who I have met when my face and mouth is swelling and I look like a blowfish that say my lips looked normal to them, and have insinuated that it could just be fat deposits. Some have had the audacity to comment, “I would give anything to have your lips.” Others have flat out admitted that they just plain don’t know what’s going on and they are clueless as what to do! In fact after being discharged from ICU this past Saturday the general hospitalist who’s been over seeing my case for some time said, “I have known you since this has all started and it has been a struggle but I have no clue why your face and throat swell, we have no diagnosis. We have exhausted all medical resources. All we can do is support you.” Imagine being so sick without a remedy or cure in sight. Now that’s tough.
Now, I know by this point you are all hoping for a happy ending, like I am and the good news is there is hope for me. In October I was referred to the National Jewish Health facility in Denver, Colorado by my immunologist. This research hospital specializes in respiratory and severe vocal cord dysfunction. At the moment, our health insurance company does not want to cover the life saving treatment because the hospital is of course, out of network. So for me to have a chance at being admitted there and getting the treatment I so desperately need, at the expense of my insurance company the treatment has to be deemed medically necessary.
I mean with my throat involuntarily swelling like it does and me being in and out of ICU unable to breathe you would think any doctor would gladly sign off on this and I would be a shoe in! However the health care system in the US is a bunch of red tape and obviously not designed for the well being of all patients. So without the help of generous people like yourself, I may never even live to see the front door of the National Jewish Health facility. This is why I have decide to start this GoFundMe in an effort to get myself from where I am at to where I need to be to have a fighting chance at staying alive.
You see while battling all these life debilitating illnesses I have reluctantly filed for disability three times over the years and have been denied each time. Although, most recently I haven’t been able to work in over a year without literally being rushed to the hospital! I have applied for unemployment for the past two months and was unsuccessful as well. My dear husband is currently a grad student trying to get through a medical doctorate program, he is in his last year. At this point he is pretty much losing his mind trying to juggle school and the stress caused by my unforeseen future, alongside our financial woes as he too has tapped out all his money sources.
Needless to say our financial situation is dire right now. Even our basic financial needs , rent electricty, food, etc. are currently unmanageable at this point and the idea of being able to afford the treatment, travel, and room and board to get the care that I need seems impossible at this point without the help of the community. Money aside I also know that time is running out and I fear this angioedema is going to kill me if I don’t get help and soon. You see the healthcare system places no urgency for care for people like me, in fact sadly I imagine it’s cheaper for the insurance company if I just died.
I’m terrified, I’m exausted, I’m devastated but I’m determined and fearless because I have Jesus, a loving husabnd, a caring family, wonderful friends and a vast community who would do anything for Selena, in my corner. And that gives me more hope than i’ll ever know for the future God has planned for me.
So friends, I am begging and pleading for your help!!! Help me fight back this broken health system and help me reclaim my life!
You can do this by simply sharing this with anyone you know, that alone helps so much. And If you feel it in your heart to help contribute to my fund that’s even better! Just know that it will be going to help save my life. Anything for Selena, right???
Also, If you want to help spread awareness and contribute in one small swoop you can follow this link to get a snazzy shirt for your donation.
https://www.customink.com/fundraising/anythingforselenascavone
Many Thanks friends,
With love and hope in my heart and God on my side,
Selena Scavone
Co-organizers (2)
Selena Scavone
Organizer
Austin, TX
Emily Legault
Co-organizer