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Not for the Faint of Heart

Hey all! Today I'm going to tell you the story of how I got to the point of a cardiac catheterization, as well as the results of the test. For most of my fairly short medical history of eight years, I hadn't had any heart problems (that I knew of). The main problem I dealt with was my autoimmune kidney disease, well, as long as we're not including the lifetime of heartburn. After the kidney problems is when all the other problems came. The heart problem became noticeable when I went to the hospital in July 2018. The reason I went was because I was experiencing an unusual shortness of breath. At that time, I was doing hemodialysis in-center because they took out my peritoneal catheter when they had to take my appendix out. When they removed the PD catheter I got another permacath placed to do HD until I could do PD again. They took my appendix out because there was a polyp inside of it that was excreting fluid and this fluid was being blocked from exiting the appendix by an appendix stone. This caused the appendix to become enlarged and therefore needed to be removed. My body is truly a crazy place.

Anyway, while on hemodialysis I felt that I wasn't taking off enough fluid but the HD nurses didn't seem to believe me when I told them this because I didn't look like I had any edema. I don't hold anything against them because they were just doing their jobs and I know they were trying their best. I started to feel pretty unwell around that time, especially because I had constant diarrhea and was experiencing shortness of breath. My blood pressure was running somewhere around 170/120 everyday. I was taking a decent amount of blood pressure medication but it wasn't doing anything to bring the numbers down. During dialysis in-center I would get extremely hot and sweaty at random times and it made me feel quite sick. One time they gave me oxygen because I started to feel very nauseous and faint. Also it's usually freezing cold in there so I'm sure it was just me and that the temperature in the room wasn't actually increasing. Luckily I had an appointment with my peritoneal dialysis nurses to check my recently placed second peritoneal catheter and they knew something was super off when I couldn't catch my breath. They had spent so much time with me in the past that they almost immediately advised me to go to the emergency room. And so I made the trip to the emergency room. I wasn't very happy about it since I felt almost fine and hate how long everything takes. I went there and they ended up keeping me for around four days. They gave me oxygen, which helped with the shortness of breath. They also ran a lot of tests, both cardiac and thyroid, and discovered a few things. They saw that I had hyperthyroidism. They also saw that my ejection fraction had gotten a bit low. I consulted with a cardiologist who specializes in cardiomyopathy and also with an endocrinologist for my thyroid. From that hospital stay I learned that I had an excess of fluid that was maybe around 20lbs. I took off all the fluid and was the skinniest I had ever been in my adult life (around 106lbs). I started treating the thyroid condition with methimazole and gradually I ended up being hypo and had to switch to levothyroxine, aka synthroid, which I am currently taking. Sorry, there are so many details that one story ends up being super long. In the hospital the test that showed the low ejection fraction was an echocardiogram, or for those who don't know, a heart sonogram. While I was in the hospital they were considering doing a cardiac catheterization but we ended up deciding to wait and see if medication (carvedilol, lisinopril and spironolactone) helped the cardiomyopathy. We thought that the damage may have been caused by my uncontrolled thyroid, which had caused my elevated heart rate and hypertension. As a reminder, I'm 25. What 25 year old has a blood pressure of 170/120? Ok, I'm sure there are a few, but still, that's insane. Since my hospital visit I've had a cardiac stress test, a MUGA scan, a pulmonary stress test, and now this cardiac cath. The MUGA scan showed that my ejection fraction was 35. Over the past few months my cardiologists (I have two!) started getting a little negative and throwing around scary words like defibrillator and heart transplant and I was feeling a crazy sense of hopelessness and fear. I don't think that they were aware of the impact of their words. Or they were but they approached the subject in a nonchalant way that both confused me and made me feel a little less than human. They're not bad doctors, but at the end of the day they're doctors and perhaps maybe it's hard for them to view people beyond their "patientness".

Recently I'd been trying to move things along with my cardiologist because I desperately want to get back on the transplant list so I can stop doing dialysis. We decided to finally do the cath and things moved quickly after that. I had it yesterday and oy vey it was wild. Before I end this post I'm going to give you a few fun details and then the results. I had to be at the hospital at 6am, as I may have mentioned in my previous post. I left my apartment around 4:05am which was insane. We picked my mom up on the way and everyone was cranky and hungry and it was horrible, but eventually we calmed down. I got to the hospital and it was the most quiet I had ever seen it. I got prepped for the test and they brought me in to the operating room around what may have been 7am. I felt like I was in a music video (a musicless music video) because it was so bright and all these people were touching me. Anywho, I had two IVs, one in my left arm and one in my right arm. They prepped the lower regions but actually ended up deciding on my right arm. I was awake for the procedure but they gave me numbing drugs and calming drugs. I still felt a lot more than I wanted to. It feels weird to feel something sliding through your upper arm. I also didn't feel as calm as I wanted to but was mostly able to handle it. They put one wire in my vein and one in my artery and poked at my heart or something like that. I guess they sort of went inside of it but I'm not really sure. It was crazy though. They added some extra heartbeats and it made me tear up because it gave me anxiety. Other than that everything was peachy! Recovery wasn't horrible either. At first I slept a bit but when I was awake my arm hurt pretty badly. I felt a different type of sore that I hadn't experienced before. After a few hours my arm felt better, everything was out of me and I was free to go. Now I have a really cool bruise that I might post a picture of later. As for the results, everything turned out to be normal! My family and I are very happy and I can finally announce that I will hopefully be on the transplant list again soon! YaY! Thanks for reading!

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