Chf, a battle to understand
It has been a little over a year since I have been diagnosed with congestive heart failure, the journey has yielded little to no results in me getting any better and each day is a struggle just to be me. It was April of 2015 when I was finally diagnosed, it had taken me contracting pneumonia for the doctors to finally listen to my concerns and to figure out what was really going on with me. Before that I had been to the doctor twice, and hospital once to voice my concern about my heart. I told my doctor I wasnāt feeling right, there was something going on with my heart that worried me. At the time even I didnāt think it was as serious as heart failure, I thought maybe I was just having panic attacks, which I kinda think I was. I told him I couldnāt breath, which was something different for me, the only time I couldnāt breath is when I was congested from a cold, for obvious reasons. But when I was sick, walking to the end of the driveway was a struggle, Iād be winded half way there. So the fact that I had no congestion, not even a cough and yet I still got winded walking short distances worried me. My doctor brushed me off and said I had the flu, gave me medication and sent me home. A week or two later my condition worsened and it was no longer walking that winded me, but simply sitting. I would just be sitting there watching television and it felt as if the wind would be knocked out of me. I would freak out, naturally I assume as anyone would. I had no previous issues with any asthmatic problems so all this was very new and scary for me. Freaking our wouldnāt help though, Iām assuming I had panic attacks, because when the air wouldnāt come so easily to my lungs and I would worry myself, I would try harder to breath and in return my breathing would become rapid and strained, and in some cases wheezing. Finally fed up and beyond worried about what was happening to me I had my boyfriend take me to the hospital. I told them too that I felt as if something was going on with my heart. It felt weird. It was so hard to explain, the only one I could think of is, āI could feel it beating more so now than ever before.ā silly right? But it is such a weird feeling, like a fluttering where my heart is supposed to be. I could feel the liquid being pumped through it, and Iāve never felt that before, so I assumed it was weird. Once again the doctors brushed me off, said I had bronchitis, gave me cough meds and an enhaler. I didnāt have a cough though, and my breathing problems were not in my lungs. I have to tell you, I am the type of person who doesnāt particularly stand up for myself. I donāt fight back with professional people who are supposed to know what they are doing, more so than I would. But I did feel they had made a mistake. Like I said I didnāt have a cough, my lungs were clear and yet they gave me an enhaler and cough medicine, said I had bronchitis and told me to follow up with my doctor, and sent me home. Later on I told a nurse my issue with them telling me I had bronchitis and he said that it doesnāt always come with a cough. I donāt know if he was simply looking out for his fellow medical professionals or if itās actually true, because I did look it up, Web MD of course, among other medical self diagnosing sites and if I remember it correctly they all mentioned a cough. I did do a follow up with my doctor, it was only a couple days after the hospital so I didnāt notice if the medicine they gave me was making any head way. I told my doctor to about not believing I had bronchitis, to which to my surprise he agreed, however he said I only had the flu. He gave me liquid abuturol, which is the breathing medicine that is in most enhalers. I might not have spelled it right, please forgive me, itās 5am and Iāve had little sleep. However, I still didnāt fight back. Of course I voiced my concerns to my family but I took my medicine like a good obedient girl. The liquid abuturol, if to much was taken made me feel really weird. It is what I imagine speed is like, my heart would race, my head felt weird, and I was fidgety, couldnāt sit still. I felt like my skin was trying to crawl off my bones. So needless to say I only took the minimum and to this day the bottle is almost full and currently in my fridge. I stuck with the enhaler, however after a while my breathing got worse. The enhaler only worked maybe because I was having panic attacks and it would sort of calm me down. After a while though, as my condition was getting worse, calming me down was no longer the problem and the enhaler was doing more damage than good. I did eventually develop a cough, it would get so bad at times that it would cause me to vomit, which would lead to me coughing up blood for the next few minutes. However one morning, I did not vomit and I still coughed up blood. I freaked out, almost cried and told my boyfriend I needed to go to the hospital. I almost didnāt tell him, I had been going to the doctors for a couple weeks already with them telling me the same thing, so why would this time be any different. I was scared it would be another bust, that they would send me home with more false diagnosis. But they didnāt. Probably a combination of the enhaler and my bad heart had led to me developing pneumonia. Of course when you get that, they keep you until your well since itās deadly. Luckily I had caught it so early though and my condition wasnāt as dangerous as it could have been. My heart on the other hand. That was another story. They transfered me to another hospital after giving me morphine for the ambulance ride. They thought it would knock me out, which it probably would have but I was so anxious, so sleep was out of the question. They also gave me a sleep aide, obviously didnāt work. It was around 2am when they finally transfered me to a hospital that was around 45 minutes away from the original one I was at, maybe less. But that meant it was around 45 minutes to an hour away from home. Visitors were scarce, and I was scared. My boyfriend tried to visit as much as he could but he had to work. And once they figured out I had heart problems they moved me to the floor that specialized in hearts, so my single room was now a shared one with a lady whose multiple family members never went home. I wouldnāt have minded, but they were so loud, so many, and so rude. To top it off they didnāt speak English and I donāt speak Spanish so I couldnāt even have the joy of listening in on their loud conversations, for the simple need of comfort. Plus Iām a nosy person. At least their loudness wasnāt the worst thing that happened. Before I went to that room, yes I had my own room, it was wonderful, my boyfriend would be able to come at any hour of the night and be welcomed by the nurses instead of being turned away because it wasnāt visiting hours. However right outside my window, so early in the morning they started construction on the building. It smelled of a construction site and there were hard hated men walking around all day, and the noise was unbearable. The only good thing about that was, they stopped, they went home around 6pm and were done until the next day. The family in my shared room, never left. Sleep was not something that happend in that hospital. Here I was learning about this new disease I was diagnosed with and I was going off little to no sleep. Not to mention I couldnāt even lie down. I forgot to mention that before I went to the hospital that was another thing that happened. I hadnāt slept in so long, just little cat naps here or there, but my breathing had gotten so bad, I couldnāt even lay down to sleep, I felt as if I were suffocating if I tried. And now I remember why they gave me the sleep aide at the other hospital, because I hadnāt properly slept in about a week. But I still couldnāt, even with the sleep aide and morphine coursing through my veins, the thought of me drowning from my own fluids in my sleep haunted me and kept me awake. Even at that time, before I knew what was wrong with me, I felt that was a possibility. To this day, if I bend over to simply pick something up off the floor I feel the liquid pouring into my lungs and sometimes I even develop a little cough. Itās only if it gets worse that I start to worry. Back at the hospital, with the lack of sleep, and still not being able to breath properly, not to mention my lungs were on fire from the pneumonia, they ran a million tests, xrays and blood work, some tests were worse than others. Like the one where they had to draw blood from my artery. It was the second time I had it done, and it does not get easier, in fact I think it gets worse because you know what to expect and it is one of the most painful things that Iāve ever had. And Iām a mother soā¦. Kidding I was so drugged up during my delivery, however I still felt it, but thatās another story for another day. That blood work was to check the oxygen levels in my blood, they did it the first time I went to the other hospital when they sent me home with the enhaler. That time it was quick and they were in and out, not as quick as you would hope but way faster than this new hospital. In the process of me getting my blood drawn daily for a few days, my veins decided they didnāt want to be messed with anymore so they became harder and harder for the nurses to find them. They would trick them, make them believe they were there, and then when they would stick me, they would run away and hide. It was like they had a mind of their own. And it wasnāt funny, I was and am still, so afraid of needles now because of that experience, I get silent panic attacks everytime they say they need to do blood work on me. The second procedure they did on me didnāt hurt so much, but it was one of the more scarier ones. I donāt remember what it is called. But they took me in a surgery room, basically gave me a epidural, they didnāt but might as well have, then the nurses prepped my leg, but not my leg. It was up towards my hip, in the middle sort of speak. Anyway they (female) nurses prepped the area, put paper sheets over me with a lil peep hole of the area they were to work on. The doctor came in after scrubbing up and explained what he was doing. I was still very sleep deprived so I donāt exactly remember what he said. But, I stayed awake, he cut a small slit in my groin area and threaded in a small tube with a type of camera or something at the end of it. It was in my artery if I remember correctly and he threaded it all the way up to my heart, took a few pictures talked with his colleagues about what he was seeing, which was all medical jargon so I didnāt understand. Then they cleaned me up and wheeled me back to my room. They told me I wasnāt allowed to even move my leg for 6 hours. I had to stay in one position for 6 hours. I donāt even sleep through the night in one position. It was horrible. I think the worst part about that procedure was the before. They told me they were going to do it days before they did and then they even rescheduled it for the following day after they were supposed to. I didnt know what to expect, except that they were going to do this surgery. So here I was alone in a hospital, sleep deprived, crying to myself because I didnāt know what was going on with me. My breathing got better though. A nurse came in to do my vitals, he listened to my lungs and was like you need Lasix. And I was like what the heck is that. He told me it would make me pee out all the fluids I was retaining. I was confused, I had thought the reason I couldnt breath was because of the pneumonia but, duh I hadnāt been able to breath for a long time now. So next thing I know they give me this Lasix, I pee out almost all of that liquid, and I could finally breath again. It was a miracle. However that Lasix makes you pee every five seconds. Itās crazy. They started giving it to me every day while I was there. Even on the day I got my procedure done. They wheeled me back into my room, told me not to move for 6 hours and then almost when the 6 hours is up, they give me the Lasix. Cruel. Bed pans arenāt very comfortable, especially when your not supposed to move so trying to get it underneath you without moving your leg is like, impossible. But I made it through. The doctors said I would get better. It was more than likely a virus that made me sick. But they still donāt know. Itās a year later, I still need to take Lasix and for the last couple of days it hasnāt been doing its job, so breathing is once again getting harder. Plus Iāve finally gotten in with an actual heart doctor and he gave me a new medication. Itās taking a toll on me though. Iām dizzy all the time. As it is with my heart condition, it only works at 20% where as the normal heart is supposed to be at 70% so my heart isnāt doing its job. I am not getting any energy, so Iām tired all of the time. Like fall down and sleep right here on this sidewalk tired. My new meds make it worse. The first few days of taking them, they were actually knocking me out. Itās gotten somewhat better but Iām still exhausted. Iām in the process of writing my first book. Motivation doesnāt come easily when you can not even find the motivation to stay awake. My daughter and my boyfriend do that for me though. They keep me here. Without them. I donāt even want to think about it. Itās still so hard every day, especially when I feel like everyone looks at me like Iām just lazy, but they just donāt even realize the reality, the extent of my situation, my condition. This disease. The doctors still say that I will eventually get better but they still donāt even know what caused it in the first place. And the fact that Iām taking all these meds and still donāt feel any better. And I donāt help myself when I look up my disease and see a book written on it, and the first page says that it will kill you. Not it may possibly, but it WILL. Here I am, a year later and I still get shorted of breath. Some days itās so hard to even peel myself of the couch. Some days I donāt even have the energy to get out of bed. But I do. Because I have to. Because I need to. Because if I donāt, why am I here still?
Itās almost 2023 and I am still here.
