{"id":577,"date":"2011-10-14T01:25:43","date_gmt":"2011-10-14T01:25:43","guid":{"rendered":"http:\/\/michelledevon.com\/?p=577"},"modified":"2021-01-03T01:41:05","modified_gmt":"2021-01-03T01:41:05","slug":"577","status":"publish","type":"post","link":"https:\/\/michelledevon.com\/index.php\/2011\/10\/14\/577\/","title":{"rendered":"I Almost Died…"},"content":{"rendered":"

DISCLAIMER\/LENGTH WARNING:<\/strong>\u00a0It\u2019s taken me a long time to write this post. I\u2019ve had to deal with a lot of emotion to get to the point of being able to look at this and my life in the new way I now must look at it. I feel blessed and cursed at this point, and waffle between them, and mostly I\u2019ve been numb. The numbness begins to wear of, and this post is what results. Bear with me, please. This is important stuff to me, though it might be totally boring to you. Thanks for allowing me the venue to purge it though.<\/em><\/p>\n

~~<\/p>\n

That right there, I want you all to use as a writing prompt, or whenever you read this\u2026 I mean it. Say anything you want, and then when you\u2019re finished saying it, say, \u201cAnd then I almost died\u2026\u201d and then I want you to write what comes after that. For example:<\/p>\n

I went to the grocery store and bought a gallon of milk. I was ready to come home, but then, on the way there, I almost died\u2026<\/span><\/p>\n

There\u2019s a story there. Write that story. Whatever you write or think or do or say, add \u2018and then I almost died\u2026\u2019 to it and then tell your readers how that changes things. Because, you see, it does change things in real life.<\/p>\n

I really did almost die.<\/strong><\/em><\/p>\n

After years of being sick, my health issues finally all came to a head. I couldn\u2019t breathe, couldn\u2019t eat, could barely move without being winded, was on supplemental oxygen, feet and body so swollen I couldn\u2019t move without pain. And I couldn\u2019t find a doctor who would help me, really help me, because I had no insurance. I did everything I was supposed to do. Took every med they gave me. Went to every appointment they made for me. Listened to every word they said to me. And none of it did any good.<\/p>\n

I still almost died.<\/p>\n

Two weeks before I went into the hospital, I was nearly 60 pounds heavier than I was just a couple of weeks before, all filled with fluid and edema, so much so I couldn\u2019t wear shoes to my doctor\u2019s appoint. I had to wear house slippers, and even those almost didn\u2019t fit. I was wearing a night shirt, because the shirts that fit me didn\u2019t fit anymore. I had stretchy pants, was so full of fluid my eyes were leaking salt water and I could barely keep them open, my feet were seeping fluid from cracks.<\/p>\n

I sat in that doctor\u2019s office, miserable and miserable looking, barely able to hold up my head, in a wheelchair, unable to stand or walk or breathe, with oxygen tubes up my no\"\"<\/a><\/em>se and a tank being pulled along beside me, my feet so swollen they were cracking at the ankles, tears in my eyes, telling the doctor how hard it was for me, how much weight I\u2019d gained, the fluid that had built up, the pulse that was too high, the breathing and the sats dropping, and she says, \u201cIt must be incredibly difficult for you\u2026.\u201d and then she refers me to an endocronologist, a pulmonologist and a weight management clinic\u2013none of which can see me for at least two months. You can\u00a0read more about that visit<\/a>\u00a0here if you\u2019re interested.<\/p>\n

I cried. I cursed her too. I should have been admitted to the hospital right then\u2026 but without insurance, she didn\u2019t want to be responsible for me, so she referred me to someone else, to be someone else\u2019s problem.<\/p>\n

So I went home, made an appointment with the only doctor who would see me without insurance, a pulmonologist, and waited to see him. In his office, I was de-satting, but he was at least willing and trying to help me. He didn\u2019t think it was too bad though \u2013 the x-ray showed I had some \u2018fluid\u2019 on my lungs, but nothing he was concerned about. He said my lungs \u2018sounded\u2019 clear, no wheezing. My sats were dropping when I moved, and my pulse went up, but surely that was just the fluid and stuff, \u2019cause after all, I couldn\u2019t be THAT bad, could I?<\/p>\n

So he sent me to get bloodwork and then sent me home.<\/p>\n

AND THEN I ALMOST DIED\u2026<\/strong><\/p>\n

Once I finally went to the ER on the fateful Friday, THEY took my BNP levels, which is indicative of heart failure and PEs. My BNP was greater than 5000. See, they stop counting at 5000. Mine was over that. BNP is an indicator of heart failure. It\u2019s supposed to be below 100 in a healthy person, and below 600 in someone with heart failure, severe. I was over 5000. The doctor told me I probably have 60-100 pounds of fluid retention. Well, that might explain why I\u2019ve gained so much weight even on a very strict diet \u2013 in less than three months. Can you imagine \u2013 just try for a moment \u2013 eating almost nothing but gaining almost 100 pounds\u2026 in just three months? Can you even imagine how horrible that would be to feel? I can. Oh, wait. I don\u2019t have to imagine. I\u2019m living it.<\/p>\n

The original doc, on Saturday morning, treated me like he was surprised I had come to the ER. \u201cWhat changed between Wednesday and now?\u201d he asked. I answered him too. Pain, in my chest. Pain, in my leg. Pain, in my pelvis. Shortness of breath, couldn\u2019t move, couldn\u2019t walk, could barely talk, couldn\u2019t even hold my head up. Pulse was 130-140 at rest, and spiking super high when trying to move at all. I was on 5 liters per minute of oxygen and was still in the upper 80s on my sats. But why did I come to the ER? No reason, doc. None at all.<\/p>\n

The ER people took me seriously though. They acted like I should have come in sooner. Why did the doctors ignore everything they saw? They saw me the same way the ER folks saw me, and the ER folks freaked. I didn\u2019t even go through triage when we showed up. They immediately pushed the wheelchair right through the doors, said, \u201cWe\u2019ve got chest pain in 108\u2026\u201d and next thing I knew, we had two doctors, three nurses and some students all hovering over me like I was going to drop dead any minute. They immediately hooked me up to an EKG, without even letting me change or anything. Literally, unbuttoning my dress without even asking, people with their hands all over me, looking for veins, sticking telemetry sensors on my chest, asking me multiple questions. They were fast, efficient, professional and very concerned.<\/p>\n

EKG SCARED US ALL<\/strong><\/p>\n

\"\"<\/a>The leads were attached, but the readings were erratic. The lines were vibrating, my heart was T-spiking, whatever that meant, and they couldn\u2019t get a read on me that was clear. They couldn\u2019t start an IV. They tried three times on one arm and hand, twice on the other, before a pediatric nurse finally came in and managed to get an IV into my thumb. OMG, that hurt. But it was an IV. They started me on a heparin drip. They gave me a hydrocortisone drip, which helped with my breathing a lot. They poked me, they prodded me, they took blood from me, and they measured my pulse, stats, ox and more. Multiple doctors came in and asked multiple questions. I repeated myself a lot, they repeated themselves a lot, and before I knew it, I was being wheeled away to X-ray. From there, I was wheeled back to the room, and more questions, more doctors, more repeating, more pokes.<\/p>\n

I was finally moved to a room upstairs and was told, \u201cYou\u2019re going to be here a while\u2026\u201d<\/p>\n

SETTLING IN BUT NOT SETTLING DOWN<\/strong><\/p>\n

The nurses met me on the floor, seventh floor, of the John Sealy UTMB hospital. They were kind, compassionate. I was exhausted. We had been up all night, with me in pain and being tense and poked and prodded. I wanted to sleep but I couldn\u2019t. They were sticking more telemetry reading stuff on my chest and stomach and abdomen, put on a Holter-type monitor on me, hooked me up to a new IV pole, pushed a bunch of meds they told me what they were but I can\u2019t remember now through the IV port, and took blood pressure, temperature, pulse, pulse ox and more\u2026 and then as suddenly as everyone had come, they all left.<\/p>\n

And in the quiet of that moment, I lay there, staring at the ceiling and thought, \u201cWhat the hell did I just get myself into?\u201d (chuckle)<\/p>\n

Soon, a team of young, very young, like younger than my daughter young, doctors came in and filled into the room. There must have been 10 of them, and one of them took the lead talking to me, but not saying much. They assured me my heart was good, my lungs sounded good, the x-rays looked clear with just some fluid on the lungs, and that they were going to do more tests and contact my pulmonologist and my primary care and get my medical records and blah blah blah\u2026<\/p>\n

Then they leave as quickly as they came.<\/p>\n

A few minutes later, breakfast comes in the door. I am put on a low-fat, low-salt cardiac diet. So my first breakfast was limp toast, two powdered eggs scrambled (with no flavor), and a cup of juice. I didn\u2019t even get coffee!<\/p>\n

While I\u2019m attempting to choke down the breakfast, the nurse comes in with this big packet of papers and in big bold black print on the top the first page says: HEART FAILURE.<\/p>\n

She says to me, \u201cThe doctor wanted me to give this to you and read this part to you\u2026\u201d and she starts reading about heart failure, assuring me that this doesn\u2019t mean my heart has stopped or stopped working or will stop working soon, but that it wasn\u2019t able to pump enough blood or oxygen to my body and this and that and blah blah blah and I looked at her, possibly in denial and said, \u201cBut they told me my heart was fine!\u201d<\/p>\n

She just kept reading and I listened and just kept shaking my head. I was in denial, refusing to accept that there was anything wrong with my heart. That wasn\u2019t why we went in the hospital. My heart was just fine on August 31 \u2013 that wasn\u2019t even two months ago. How could I have heart failure now?<\/p>\n

CONGESTIVE HEART FAILURE<\/strong><\/p>\n

But apparently, the BNP of higher than 5000 is indicative of congestive heart failure, and no, the heart doesn\u2019t have to be damaged in order for other things to cause congestive heart failure. So\u2026 yes, I have congestive heart failure, and that apparently is where the severe edema has come from. Okay, but what\u2019s causing the congestive heart failure? I had an echocardiogram in August 31, 2011 that was mostly normal, only showing mild pulmonary arterial hypertension. We assumed the hypoxia had been causing it and we were looking for a reason for the hypoxia.<\/p>\n

The hospital started me on heparin, just in case I had blood clots, because it was the weekend and they couldn\u2019t get the scans they wanted done for me right away. They said that heparin wouldn\u2019t hurt me any, but not having it could hurt me, so better safe than sorry. I agreed with that.<\/p>\n

Turns out, it was a good thing they did this, because on Monday morning, after three days of heparin therapy via IV, I was taken to the nuclear lab and they performed something called a ventilation perfusion test. They call it a V\/Q test, and when the results came in, the doctor came to my room and said, \u201cWell, I have some bad news.\u201d<\/p>\n

I took a deep breath and waited for this:\u00a0Massive, bilateral pulmonary embolisms, with possible infarctions.\"\"<\/a><\/strong><\/p>\n

I had blood clots, probably from my legs and pelvis, in both of my lungs, all over in them. The doctor, the pulmonologist who was treating me, said they were \u201cscary\u2026\u201d and he was \u201cvery glad you came in when you did or you would probably be dead.\u201d<\/p>\n

A funny thing happened on the way to living the rest of my life\u2026<\/p>\n

\u2026.I almost died.<\/p>\n

SCARING ME STOOPID<\/strong><\/p>\n

Then the pulmonologist comes into my room: \u201cYou\u2019re V\/Q scan was scary. Massive, multiple bilateral pulmonary embolisms, both lungs\u2026 just all over them.\u201d The \u2018fluid\u2019 the x-rays showed in my lungs was blood, from blood clots that they think came from my legs or pelvis. Fortunately, the treatment for that was to start me on heparin IV and start dosing coumadin\/warfarin, which they had already done when I was in the ER part and I\u2019d been on heparin the entire time I was in the hospital. They changed the dosages, changed some of my medications, and increased my Lasix to try to get some more fluid off of me. They started measuring how much liquids I drank versus how much I put out, monitoring kidney function, testing my PT\/INR levels and watching for my potassium to drop.<\/p>\n

The doctor started talking fast and furious about all the tests they were going to do, things they needed to check, bloodwork I needed done, things I needed to consider and worry about. Then the next doctor, another specialist, came in and started asking all sorts of questions. Then another doctor came in and said they were afraid I was having ischemia. Then another doctor, yet another specialist, came in and told me I would be on Coumadin for the rest of my life\u2026 he said he wanted to impress upon me that this condition I had now was life-threatening, fatal, and very dangerous and that the drugs they were putting me on could be dangerous too and if they weren\u2019t taken right, they could could kill me. Yes, he used these words. Yes, he was that adamant.<\/p>\n

I was given papers to read about specific conditions and things that were going on with me. They took me to get an echocardiogram and came back telling me that my atrial valve was moderately to severely dilated. That\u2019s not good. They said it\u2019s fortunate that the echo in August looked good, but that the clots obviously had damaged the valve. They are, however, hopeful that the valve will eventually go back to normal if there are no more clots that go through the heart to the lungs.<\/p>\n

Unfortunately, we believe that I\u2019ve thrown another clot recently, this week, while on coumadin. That\u2019s not good. Each new clot that breaks loose and goes through the heart is the one that could kill me.<\/p>\n

Kills me\u2026\"\"<\/a><\/em><\/p>\n

\u2026and then I almost died\u2026<\/p>\n

 <\/p>\n

Kills me\u2026\u00a0\u201c15% of all sudden deaths are caused by pulmonary embolisms\u2026\u201d<\/em><\/p>\n

READING, READING, READING\u2026 ANXIETY<\/strong><\/p>\n

Many people die from pulmonary arterial hypertension. Sometimes, people might wish they died from it too, that\u2019s how bad severe cases can be. We know in August I was diagnosed with PAH. We know that the last echo that they did in the hospital says I have it too. But we also don\u2019t know if the pulmonary embolisms caused this and maybe once the clots are all gone, the PAH will go away too. We can hope. We can pray. We won\u2019t know for some time if this is the case or not. Just like we won\u2019t know if the heart will heal itself and go back to normal or not either. All we can do is wait and see how well I recover from this, if I recover from this.<\/p>\n

But my BNP is still up. The fluid retention is better, but still bad, bad, bad. I\u2019ve lost a steady one pound per day since leaving the hospital. This is perfect, slow, steady fluid loss. I\u2019m on restricted salt and fluids and on moderate doses of Lasix to wash out the fluid. I spend a lot of time going back and forth from the bathroom. The first week home from the hospital, I had to use the wheelchair. Just rolling over in bed was hard. Getting into the chair was torture and going to the bathroom left me in tears many times.<\/p>\n

But I\u2019ve been able to walk again, at least a little\u00a0 bit. I still pant some, have to catch my breath. My legs aren\u2019t as shaky. I\u2019m not needing to use the wheelchair for every trip. I even was able to take the oxygen off several times the last few days without dropping sats during the day. There have been ups and downs. I\u2019ll do better, get my hopes up, then have a plummet. I\u2019m terrified that THIS is how I\u2019m going to have to live the rest of my life, because this is not living at all. I sometimes end up in tears by the time I make it to the bathroom, and they give me Lasix that makes me need to pee all the time. I get angry sometimes. Mostly, I just am so, so tired.<\/p>\n

The doctor said that my getting up and going to the bathroom isn\u2019t much different than someone else running a marathon. My heart rate goes up, my pulse goes up, my body has to use so much energy just to stand. I get shakey, cold sweaty, jittery and short of breath. There is pain, pain in my chest, pain in my back. It\u2019s not good.<\/p>\n

And yet\u2026 I\u2019m better than I was. I hope I keep getting better.<\/p>\n

COUMADIN\/WARFARIN FOR LIFE<\/strong><\/p>\n

I\u2019m still being regulated on the Coumadin, and I\u2019m having a little bit of problems with that \u2013 my levels WERE too high, and they worried about me bleeding internally now, so we\u2019re having to be careful and monitor that very closely while I\u2019m titrating on it. Twice per week I have to go in and have bloodwork done to check my levels until we get it steady. The last\"\"<\/a>\u00a0time they lowered my dosage, and now we think I\u2019ve thrown another clot from my right leg, so it looks like my levels might have to be increased again. I\u2019ll find out in a couple of days. I think I go into the PC and the endo on Tuesday.<\/p>\n

The paperwork they\u2019ve given me scared me. I read things like this:\u00a0\u201cIn Dr. Weber\u2019s study, a BNP of 5,000 pg\/mL or higher was associated with 60% increased risk for dying within three months of discharge, while a BNP of 1,500 pg\/mL carried a 37% increased three-month mortality risk.\u201d<\/em><\/p>\n

I was just discharged when I read that. I hope I\u2019m still around in three months, eh?<\/p>\n

Or what about this:\u00a0\u201cAbout 15% of all cases of sudden death are attributable to PE\u2026\u201d<\/em><\/p>\n

That\u2019s scary stuff.<\/p>\n

CONGESTIVE HEART FAILURE & PULMONARY ARTERIAL HYPERTENSION
\n<\/strong><\/p>\n

At least for now, I have CHF and PAH, and those two things are critical, so they are putting all their focus on them. There are other problems, pain, my back, my sinuses, the perforated septum from the oxygen, the adrenal insufficiency, the hashimoto\u2019s hypothyroidism, and who knows what else\u2026 I don\u2019t know. Mostly, I\u2019m so frustrated with the slowness of my recovery. I told the primary care doc I met with last week, \u201cI was surprised by how weak I was when I got home\u2026\u201d She says it\u2019s normal. She says to give it time. But the more time I give it, the worse things seem to be.<\/p>\n

The hardest part right now is that we still don\u2019t know much of anything. Don\u2019t get me wrong, the new docs are amazing. They are doing everything they can to help me. They are listening. They are looking at my history. They are talking to each other. They are developing plans to help me. It\u2019s more than I ever could have hoped for. I wish I had found them four years ago when all this started getting so much worse and maybe I wouldn\u2019t be here now. But they\u2019ve been so busy dealing with the acute pulmonary embolisms, that we haven\u2019t had much time to worry about the underlying causes of the problems I\u2019m having.<\/p>\n

I still need to talk to them about the echocardiogram, and I still have all the pulmonary function tests to do. I still have to see the endo next week. So there\u2019s so much more left to do, to learn about my health, to figure out. Anxiety is high right now. I don\u2019t know, do I push myself so I am strengthened or do I not push myself so I don\u2019t throw a clot? Do I exercise to make my heart stronger or will that only make it bigger and push it too hard? I don\u2019t know these things. We\u2019re still waiting to hear what the plan is. So I sit around wondering is the next pain I feel in my chest going to be the one that takes me down? I hate anxiety. Hate it.<\/p>\n

\n

\"\"<\/a><\/p>\n

\n<\/div>\n

Anyway\u2026.<\/p>\n

IF YOU\u2019VE BEEN WONDERING<\/strong><\/p>\n

So I do apologize to those who have been wondering and who have sent me emails and asked questions. I\u2019m a bit numb and confused and worried about things, and I don\u2019t know how to take all the stuff I do know or what to do with the stuff I don\u2019t know yet. I\u2019m scared and yet I\u2019m okay too. I don\u2019t know. I\u2019m tired, mostly. I\u2019m tired all the time. I can\u2019t ever quite catch up with that feeling of being rested. My body doesn\u2019t want to do what I tell it to do, and that just kills me. I can\u2019t focus, can\u2019t concentrate, can\u2019t think and can\u2019t write\u2026 that sucks. The can\u2019t write part is the worst, after the not being able walk to the bathroom. I have cabin fever too. I want to leave the house, but I can\u2019t even walk to the car to go. So yes, I\u2019m feeling a bit sorry for myself, when I\u2019m not feeling numb and just staring at the wall.<\/p>\n

I never expected to feel so weak\u2026 so helpless\u2026 so not me. I\u2019m tired. I\u2019m so very, very tired.<\/p>\n

But I\u2019m not giving up. I never do. I just\u2026 I just need time, right?<\/p>\n

So if you\u2019ve made it this far, thanks for caring and listening. I\u2019ll likely share more next week when I meet with the docs. It\u2019ll be a whole day at the clinic seeing multiple specialists, so it\u2019ll be a long, hard needle-poking day for me.<\/p>\n

Love you all and thank you for staying with me through all these struggles\u2026 I\u2019m hanging on!<\/p>\n

Love and stuff,<\/em>
\nMichy<\/strong><\/p>\n","protected":false},"excerpt":{"rendered":"

DISCLAIMER\/LENGTH WARNING:\u00a0It\u2019s taken me a long time to write this post. I\u2019ve had to deal with a lot of emotion to get to the point of being able to look at this and my life in the new way I now must look at it. 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