{"id":514,"date":"2015-06-23T04:09:19","date_gmt":"2015-06-23T04:09:19","guid":{"rendered":"http:\/\/michelledevon.com\/?p=514"},"modified":"2021-01-02T04:14:24","modified_gmt":"2021-01-02T04:14:24","slug":"pop-the-balloon-2","status":"publish","type":"post","link":"https:\/\/michelledevon.com\/index.php\/2015\/06\/23\/pop-the-balloon-2\/","title":{"rendered":"Pop the Balloon"},"content":{"rendered":"<p>One of the worst parts of CTEPH and CHF together is the swelling and fluid retention. The one single thing I can do that makes me feel better is to keep the fluid down. I do this by taking high-doses of diuretics and restricting my fluid t 1 1\/2 to 2 liters of total fluid per day. I\u2019m not 100% nitpicky about the amount of fluid\u2013many days I go over, because I don\u2019t always count broths and fluids in foods and such\u2013but I try to keep it really close to that. Mostly, I try to make sure that more comes out than goes in\u2013if ya know what I mean.<\/p>\n<p>Being sick, you\u2019ll learn quickly that talking about bodily fluids isn\u2019t something to be ashamed of\u2013it\u2019s just a fact of life. We poop and we pee and we sweat and we bleed, and our doctors are quite interested in all those fluids. For me, keeping the output higher than the input is a must. It helps keep the fluid out of my abdomen (which is called ascites) and out of my feet and legs, which can increase my risk of DVT, which can lead to embolism, which is what caused the problems I have in the first place. My hematologist said that one more big blood clot could be it for me\u2013the lungs just can\u2019t handle any more. I\u2019ve got plenty in there all calcified over, so I don\u2019t need to add to them.<\/p>\n<p>CHF, no matter what causes it, itself causes fluid production, which leads to fluid retention in the body. My feet and hands swell, my face swells around my chin and cheeks, my belly swells and the fluid backs up in my abdomen and that makes it hard to breathe. I also get fluid retention in and around the lungs. It\u2019s kind of like having pneumonia, but instead of having the fluid in my lungs pushing out, it\u2019s on the outside of my lungs pushing in\u2013and breathing and oxygenation is tough when that happens.<span id=\"more-3376\"><\/span><\/p>\n<p>The last few days, I\u2019ve been dropping down into the upper 70s on y oxygen saturation when I walk just to the bathroom and back. Anything below 92 is bad for the brain, anything below 90 is worrisome, below 87 is where the government things things are bad (where they will approve oxygen), and that\u2019s where my heart rate starts to go through the roof. Then when we get down to about 82, my neck veins start to protrude and throb and my head will pound. My chest hurts horribly anywhere below 82\u2026. when I\u2019m like that, around 76 or 78, my heart rate is usually around 160, and that\u2019s while I\u2019m sitting down trying to catch my breath. It takes anywhere from 2-5 minutes for me to recover\u2013which probably sounds pretty short for you, but try to held your breath for 2 minutes and see how it feels. You can\u2019t do it\u2013I seriously doubt even if you did that you wouldn\u2019t see your heart rate raise so substantially.<\/p>\n<p>But I do. I feel it. And it hurts. And it\u2019s scary. And those 2 minutes or five minutes are a lot longer than you think when you\u2019re going through it.<\/p>\n<p>I carry a pulse oximeter with me everywhere I go. When the breathing gets rough, like when I walk or have to get up and move around at all, I put the oximeter on my finger and I will take slow, deep breaths and \u2018blow trumpets\u2019 until I catch my breath. For some reason, when you act like you\u2019re trying to blow a trumpet, you can get you oxygen back up faster. I watch the numbers on the oximeter, and I can see the oxygen saturation going up and watch the heart rate go down, and that\u2019s a visual reminder that I\u2019m going to be okay soon. It helps keep the natural anxiety at bay.<\/p>\n<p><a href=\"https:\/\/web.archive.org\/web\/20160807092133\/http:\/\/www.amazon.com\/gp\/product\/B00EVIKKUW\/ref=as_li_tl?ie=UTF8&amp;camp=1789&amp;creative=390957&amp;creativeASIN=B00EVIKKUW&amp;linkCode=as2&amp;tag=accentuateser-20&amp;linkId=GCGFJC7VZJH44GKE\"><img decoding=\"async\" src=\"https:\/\/web.archive.org\/web\/20160807092133im_\/http:\/\/ws-na.amazon-adsystem.com\/widgets\/q?_encoding=UTF8&amp;ASIN=B00EVIKKUW&amp;Format=_SL110_&amp;ID=AsinImage&amp;MarketPlace=US&amp;ServiceVersion=20070822&amp;WS=1&amp;tag=accentuateser-20\" alt=\"\" border=\"0\" \/><\/a><img loading=\"lazy\" decoding=\"async\" src=\"https:\/\/web.archive.org\/web\/20160807092133im_\/http:\/\/ir-na.amazon-adsystem.com\/e\/ir?t=accentuateser-20&amp;l=as2&amp;o=1&amp;a=B00EVIKKUW\" alt=\"\" width=\"1\" height=\"1\" border=\"0\" \/><\/p>\n<p>Think of it like this: you\u2019re under water. You can\u2019t breathe. You don\u2019t know where the surface is or which way is up or how far away that might be. You are holding your breath because you have no choice but to hold your breath, but everything in your brain is saying breathe, breathe, breathe\u2026 but you can\u2019t. You can\u2019t get a breath in. All you an do is swim and hope you\u2019re going to break the surface soon. But what if you don\u2019t? You\u2019d panic. You\u2019d feel your heart beating in your chest and your pulse pounding through your body, pulsing into your fingers and toes. It\u2019s hard not to panic. And the anxiety that comes from not being able to breathe makes it harder to breathe. It\u2019s a vicious circle of anxiety, trouble breathing, rapid heart rate, more anxiety, more trouble breathing\u2026<\/p>\n<p>I\u2019ve learned not to panic. As long as I have the pulse ox, I can watch those numbers and count.<\/p>\n<p>But the pain, ugh. I can\u2019t stand the pain. And that lingers for a little while.<\/p>\n<p>Right now, I\u2019m a little fluid overloaded, and I know it. I\u2019ve increased my diuretic medication (I take both Lasix and Bumex, at relatively high doses) and I\u2019ve been decreasing my fluid. It takes a couple of days, but the fluid will go down again.<\/p>\n<p>What causes it to happen? Being too active. Being up too much. Sitting in the normal chair sitting position with my feet down for long periods of time. Standing for too long. Not sleeping well or not sleeping at all (and that sucks with diagnosed chronic insomnia\u2013sleep does so much for your body that is good\u2013I wish I could sleep!) causes major fluid retention. Sleeping helps bring the swelling down considerably. Eating too much high-sodium foods or sodium in general. Missing a medication I need. Getting too hot for long periods of time. Travel. Heck, sometimes just being awake and alive causes fluid retention.<\/p>\n<p>But when the fluid load is up, that means blood volume is up too, which means the heart is having to pump more through it and move more volume to move the same amount of oxygen and that puts stress on the body and heart. It also can increase blood pressure\u2013but fortunately, I haven\u2019t had much problem with that. Mine is usually too low, or worse, the numbers are too close together.<\/p>\n<p>Anyway, right now, I look like I\u2019m pregnant, with a big belly all swollen from fluid. It scares me sometimes, because my friend Cat, the one who had CTEPH and a sickle cell problem and died, also had a swollen belly right before she went into the hospital for the last time. I know it\u2019s silly to think that way, but it\u2019s sort of the<a href=\"http:\/\/michelledevon.com\/index.php\/2019\/11\/24\/ptsd-and-me\/\" target=\"_blank\" rel=\"noopener\">\u00a0anxiety\/PTSD stuff rearing its ugly head and waiting for the bomb to explode.<\/a><\/p>\n<p>I realized today that I\u2019ve been diagnosed with this condition now for 3 1\/2 years or so, going on four years. When I first read the statistics on this condition, 6 years was considered a long time to survive with this condition. That means I\u2019m entering the outlier zone for statistics. Really, I\u2019m already there, since my docs keep telling me I shouldn\u2019t be alive. But yeah. Being outside the statistical measures for your condition isn\u2019t an exciting place to be\u2013it\u2019s a scary one. No one can tell me what\u2019s coming next.<\/p>\n<p>I\u2019m weird like that. I like to know what\u2019s coming next.<\/p>\n<p>Or maybe it\u2019s because I fear I DO know what\u2019s coming next. As I\u2019ve said many times in my life: I\u2019m not afraid of being dead; it\u2019s all the dying you have to do to get there that scares me.<\/p>\n<p>But I\u2019m not planning on dying any time soon.<\/p>\n<p>Mostly, tonight, I\u2019m just rambling, because I needed to write and I needed to type and I needed to DO something.<\/p>\n<p>Love and stuff,<\/p>\n<p>Michy<\/p>\n<p><a href=\"https:\/\/web.archive.org\/web\/20160807092133\/http:\/\/dyingtolive.michelleldevon.com\/brave-bullshit-or-brave-bullshit\/cooltext939920976\/\" rel=\"attachment wp-att-2893\"><img loading=\"lazy\" decoding=\"async\" class=\"alignleft wp-image-2893\" src=\"https:\/\/web.archive.org\/web\/20160807092133im_\/http:\/\/dyingtolive.michelleldevon.com\/wp-content\/uploads\/2013\/03\/cooltext939920976.png\" sizes=\"auto, (max-width: 149px) 100vw, 149px\" srcset=\"https:\/\/web.archive.org\/web\/20160807092133im_\/http:\/\/dyingtolive.michelleldevon.com\/wp-content\/uploads\/2013\/03\/cooltext939920976.png 438w, https:\/\/web.archive.org\/web\/20160807092133im_\/http:\/\/dyingtolive.michelleldevon.com\/wp-content\/uploads\/2013\/03\/cooltext939920976-150x43.png 150w, https:\/\/web.archive.org\/web\/20160807092133im_\/http:\/\/dyingtolive.michelleldevon.com\/wp-content\/uploads\/2013\/03\/cooltext939920976-300x86.png 300w\" alt=\"cooltext939920976\" width=\"149\" height=\"43\" \/><\/a><\/p>\n<p>&nbsp;<\/p>\n<p>PS: Read the link in the post above if you haven\u2019t yet. It\u2019s important to me. It was a good post, I think, but didn\u2019t get many comments, so I don\u2019t know if anyone actually read it. Love ya\u2019ll!<\/p>\n","protected":false},"excerpt":{"rendered":"<p>One of the worst parts of CTEPH and CHF together is the swelling and fluid retention. The one single thing I can do that makes me feel better is to keep the fluid down. I do this by taking high-doses of diuretics and restricting my fluid t 1 1\/2 to 2 liters of total fluid [&hellip;]<\/p>\n","protected":false},"author":1,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_jetpack_memberships_contains_paid_content":false,"footnotes":""},"categories":[8],"tags":[],"class_list":["post-514","post","type-post","status-publish","format-standard","hentry","category-health"],"yoast_head":"<!-- This site is optimized with the Yoast SEO Premium plugin v27.6.1 (Yoast SEO v27.2) - https:\/\/yoast.com\/product\/yoast-seo-premium-wordpress\/ -->\n<title>Pop the Balloon - Author Michelle Devon<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/michelledevon.com\/index.php\/2015\/06\/23\/pop-the-balloon-2\/\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Pop the Balloon - Author Michelle Devon\" \/>\n<meta property=\"og:description\" content=\"One of the worst parts of CTEPH and CHF together is the swelling and fluid retention. 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