Chloe's Heart Surgery
Donation protected
Hey Everyone,
Our dear Chloe is facing heart surgery and needs our support. On May 31st she will have invasive cardiac surgery to remove an occluder device. She is in wonderful hands, but she will be inundated with both medical bills AND the loss of income during her recovery. This girl is one heck of a human being. Let's unburden her a little, especially as she focuses on recovery. Please, please, please consider giving (even a few dollars), and also share her story with others whom I am not reaching with this post.
You can read her story here:
About 8 years ago, I had an occluder device placed in my heart to close an atrial septal defect (a congenital heart defect/hole in my heart). They placed it via catheterization, so I was home the next day. It was a simple procedure. They closed it mainly because it greatly increased my stroke risk and so my neurosurgeon required it to be closed prior to removing my brain tumor.
I haven't felt well... like ever, but there's been a sense of acceptance that maybe this is just how I am. I struggle with near constant fatigue, daily headaches, muscle pain/weakness, joint pain, shortness of breath, and so on. I’ve done full pulmonary work-ups, tested for every autoimmune disease in existence, and results are always negative. When I started working in cardiothoracic surgery a few years ago, I found out that the surgeon who originally placed my occluder device inappropriately placed these devices in thousands of people. Now tons of people are having the devices removed because they have severe nickel allergies and have widespread systemic inflammatory symptoms. The device is partially made of nickel, but there was no nickel testing prior to implant. When I started this job, it was the first I had heard of any problems with these devices. I then spent 2+ years skipping through fields of flowers and saying, "Wow, I got so lucky that I've had zero problems with my device!" because denial. In early April, I started working on a project with these patients who have had the devices removed, so I was eyeball-deep in their medical records, reading about their symptoms. Fatigue, headaches, chronic pain, shortness of breath. I called and made an appointment with dermatology to get tested for a nickel allergy. I did both patch and scratch testing and my reaction was scored a 3+, which means "extreme positive" (first time I've been called "extremely positive" anything...). I ended up with huge, blistering hives where the nickel patches had been on my skin.
So, this device needs to come out of my heart. If it did that to my skin, it makes me nauseated to think what it's been doing inside my body for nearly 8 years. It's possible that we'll get this out and nothing will change in terms of my symptoms. It's also possible that it'll make a huge difference in how I feel. Based on this study I've been working on (hashtag conflict of interest, but it's cool), we had more than 90% of our patients say that their symptoms improved after having the device taken out, and 42% of those people had complete resolution of symptoms. So, crossing fingers that that will be the case for me too. (I would be thrilled with even partial relief.)
Luckily, the chief of cardiothoracic surgery is my boss. Ha. He's a great guy, totally brilliant, ridiculously talented at what he does. He's agreed to be my surgeon. This procedure is nothing in comparison to the complicated stuff he does on a regular basis. They'll be able to do the surgery via thoracotomy versus sternotomy, meaning they'll be able to go in through my ribs instead of needing to crack my chest. This speeds up recovery quite a bit, though it’s actually supposed to be more painful than a sternotomy which isn’t awesome. I will have to be on bypass during surgery, which freaks me the hell out, but I did just learn that it'll be pulsatile bypass, which means my heart will be beating the whole time... they don't have to stop it. So yay for that. It's a big surgery, but not as big as it could be. Counting tiny wins right now.
This party is scheduled for Friday 5/31. They're estimating that I'll be in the hospital 5-7 days, with 1-2 of those days in ICU. Im looking at 3-4 weeks off work (#pleasesendcash) and probably 2 months before I’m back to normal functioning. I’m told that I’ll actually be in reasonably good shape when I go home, in terms of not needing to be cared for or having many restrictions... just pain and fatigue. The main restriction is that I can’t swim for 12 effing weeks. I’ve been swimming 4-5 times a week for the last couple months, so this is frankly a bit devastating... but damn that first leap in will feel amazing when it’s allowed.
You may remember that when it was originally implanted, we named my septal occluder Beyoncé. (You know, so Beyoncé would be in my heart forever.) Please note that because of shitty behavior, said device has been demoted and shall henceforth be known as Rick.
Send all the good thoughts, friends. I sound sassy and confident because it’s me, but I’m really pretty flipped out about this.
Our dear Chloe is facing heart surgery and needs our support. On May 31st she will have invasive cardiac surgery to remove an occluder device. She is in wonderful hands, but she will be inundated with both medical bills AND the loss of income during her recovery. This girl is one heck of a human being. Let's unburden her a little, especially as she focuses on recovery. Please, please, please consider giving (even a few dollars), and also share her story with others whom I am not reaching with this post.
You can read her story here:
About 8 years ago, I had an occluder device placed in my heart to close an atrial septal defect (a congenital heart defect/hole in my heart). They placed it via catheterization, so I was home the next day. It was a simple procedure. They closed it mainly because it greatly increased my stroke risk and so my neurosurgeon required it to be closed prior to removing my brain tumor.
I haven't felt well... like ever, but there's been a sense of acceptance that maybe this is just how I am. I struggle with near constant fatigue, daily headaches, muscle pain/weakness, joint pain, shortness of breath, and so on. I’ve done full pulmonary work-ups, tested for every autoimmune disease in existence, and results are always negative. When I started working in cardiothoracic surgery a few years ago, I found out that the surgeon who originally placed my occluder device inappropriately placed these devices in thousands of people. Now tons of people are having the devices removed because they have severe nickel allergies and have widespread systemic inflammatory symptoms. The device is partially made of nickel, but there was no nickel testing prior to implant. When I started this job, it was the first I had heard of any problems with these devices. I then spent 2+ years skipping through fields of flowers and saying, "Wow, I got so lucky that I've had zero problems with my device!" because denial. In early April, I started working on a project with these patients who have had the devices removed, so I was eyeball-deep in their medical records, reading about their symptoms. Fatigue, headaches, chronic pain, shortness of breath. I called and made an appointment with dermatology to get tested for a nickel allergy. I did both patch and scratch testing and my reaction was scored a 3+, which means "extreme positive" (first time I've been called "extremely positive" anything...). I ended up with huge, blistering hives where the nickel patches had been on my skin.
So, this device needs to come out of my heart. If it did that to my skin, it makes me nauseated to think what it's been doing inside my body for nearly 8 years. It's possible that we'll get this out and nothing will change in terms of my symptoms. It's also possible that it'll make a huge difference in how I feel. Based on this study I've been working on (hashtag conflict of interest, but it's cool), we had more than 90% of our patients say that their symptoms improved after having the device taken out, and 42% of those people had complete resolution of symptoms. So, crossing fingers that that will be the case for me too. (I would be thrilled with even partial relief.)
Luckily, the chief of cardiothoracic surgery is my boss. Ha. He's a great guy, totally brilliant, ridiculously talented at what he does. He's agreed to be my surgeon. This procedure is nothing in comparison to the complicated stuff he does on a regular basis. They'll be able to do the surgery via thoracotomy versus sternotomy, meaning they'll be able to go in through my ribs instead of needing to crack my chest. This speeds up recovery quite a bit, though it’s actually supposed to be more painful than a sternotomy which isn’t awesome. I will have to be on bypass during surgery, which freaks me the hell out, but I did just learn that it'll be pulsatile bypass, which means my heart will be beating the whole time... they don't have to stop it. So yay for that. It's a big surgery, but not as big as it could be. Counting tiny wins right now.
This party is scheduled for Friday 5/31. They're estimating that I'll be in the hospital 5-7 days, with 1-2 of those days in ICU. Im looking at 3-4 weeks off work (#pleasesendcash) and probably 2 months before I’m back to normal functioning. I’m told that I’ll actually be in reasonably good shape when I go home, in terms of not needing to be cared for or having many restrictions... just pain and fatigue. The main restriction is that I can’t swim for 12 effing weeks. I’ve been swimming 4-5 times a week for the last couple months, so this is frankly a bit devastating... but damn that first leap in will feel amazing when it’s allowed.
You may remember that when it was originally implanted, we named my septal occluder Beyoncé. (You know, so Beyoncé would be in my heart forever.) Please note that because of shitty behavior, said device has been demoted and shall henceforth be known as Rick.
Send all the good thoughts, friends. I sound sassy and confident because it’s me, but I’m really pretty flipped out about this.
Organizer and beneficiary
Aggie Shwayder
Organizer
Salt Lake City, UT
Chloe Skidmore
Beneficiary