And Then I Almost Died…

DISCLAIMER/LENGTH WARNING: It’s taken me a long time to write this post. I’ve 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’ve 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.

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That right there, I want you all to use as a writing prompt, or whenever you read this… I mean it. Say anything you want, and then when you’re finished saying it, say, “And then I almost died…” and then I want you to write what comes after that. For example:

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…

There’s a story there. Write that story. Whatever you write or think or do or say, add ‘and then I almost died…’ to it and then tell your readers how that changes things. Because, you see, it does change things in real life.

I really did almost die.

After years of being sick, my health issues finally all came to a head. I couldn’t breathe, couldn’t eat, could barely move without being winded, was on supplemental oxygen, feet and body so swollen I couldn’t move without pain. And I couldn’t 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.

I still almost died.

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’t wear shoes to my doctor’s appoint. I had to wear house slippers, and even those almost didn’t fit. I was wearing a night shirt, because the shirts that fit me didn’t 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.

I sat in that doctor’s 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 nose 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’d gained, the fluid that had built up, the pulse that was too high, the breathing and the sats dropping, and she says, “It must be incredibly difficult for you….” and then she refers me to an endocronologist, a pulmonologist and a weight management clinic–none of which can see me for at least two months. You can read more about that visit here if you’re interested.

I cried. I cursed her too. I should have been admitted to the hospital right then… but without insurance, she didn’t want to be responsible for me, so she referred me to someone else, to be someone else’s problem.

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’t think it was too bad though – the x-ray showed I had some ‘fluid’ on my lungs, but nothing he was concerned about. He said my lungs ‘sounded’ clear, no wheezing. My sats were dropping when I moved, and my pulse went up, but surely that was just the fluid and stuff, ’cause after all, I couldn’t be THAT bad, could I?

So he sent me to get bloodwork and then sent me home.

AND THEN I ALMOST DIED…

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’s 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’ve gained so much weight even on a very strict diet – in less than three months. Can you imagine – just try for a moment – eating almost nothing but gaining almost 100 pounds… in just three months? Can you even imagine how horrible that would be to feel? I can. Oh, wait. I don’t have to imagine. I’m living it.

The original doc, on Saturday morning, treated me like he was surprised I had come to the ER. “What changed between Wednesday and now?” he asked. I answered him too. Pain, in my chest. Pain, in my leg. Pain, in my pelvis. Shortness of breath, couldn’t move, couldn’t walk, could barely talk, couldn’t 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.

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’t even go through triage when we showed up. They immediately pushed the wheelchair right through the doors, said, “We’ve got chest pain in 108…” 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.

EKG SCARED US ALL

The leads were attached, but the readings were erratic. The lines were vibrating, my heart was T-spiking, whatever that meant, and they couldn’t get a read on me that was clear. They couldn’t 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.

I was finally moved to a room upstairs and was told, “You’re going to be here a while…”

SETTLING IN BUT NOT SETTLING DOWN

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’t. 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’t remember now through the IV port, and took blood pressure, temperature, pulse, pulse ox and more… and then as suddenly as everyone had come, they all left.

And in the quiet of that moment, I lay there, staring at the ceiling and thought, “What the hell did I just get myself into?” (chuckle)

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…

Then they leave as quickly as they came.

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’t even get coffee!

While I’m 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.

She says to me, “The doctor wanted me to give this to you and read this part to you…” and she starts reading about heart failure, assuring me that this doesn’t mean my heart has stopped or stopped working or will stop working soon, but that it wasn’t 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, “But they told me my heart was fine!”

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’t why we went in the hospital. My heart was just fine on August 31 – that wasn’t even two months ago. How could I have heart failure now?

CONGESTIVE HEART FAILURE

But apparently, the BNP of higher than 5000 is indicative of congestive heart failure, and no, the heart doesn’t have to be damaged in order for other things to cause congestive heart failure. So… yes, I have congestive heart failure, and that apparently is where the severe edema has come from. Okay, but what’s 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.

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

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, “Well, I have some bad news.”

I took a deep breath and waited for this: Massive, bilateral pulmonary embolisms, with possible infarctions.

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 “scary…” and he was “very glad you came in when you did or you would probably be dead.”

A funny thing happened on the way to living the rest of my life…

….I almost died.

SCARING ME STOOPID

Then the pulmonologist comes into my room: “You’re V/Q scan was scary. Massive, multiple bilateral pulmonary embolisms, both lungs… just all over them.” The ‘fluid’ 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’d 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.

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… 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’t taken right, they could could kill me. Yes, he used these words. Yes, he was that adamant.

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’s not good. They said it’s 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.

Unfortunately, we believe that I’ve thrown another clot recently, this week, while on coumadin. That’s not good. Each new clot that breaks loose and goes through the heart is the noe that could kill me.

Kills me…

…and then I almost died…

 

Kills me… “15% of all sudden deaths are caused by pulmonary embolisms…”

READING, READING, READING… ANXIETY

Many people die from pulmonary arterial hypertension. Sometimes, people might wish they died from it too, that’s 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’t 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’t know for some time if this is the case or not. Just like we won’t 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.

But my BNP is still up. The fluid retention is better, but still bad, bad, bad. I’ve lost a steady one pound per day since leaving the hospital. This is perfect, slow, steady fluid loss. I’m 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.

But I’ve been able to walk again, at least a little  bit. I still pant some, have to catch my breath. My legs aren’t as shaky. I’m 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’ll do better, get my hopes up, then have a plummet. I’m terrified that THIS is how I’m 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.

The doctor said that my getting up and going to the bathroom isn’t 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’s not good.

And yet… I’m better than I was. I hope I keep getting better.

COUMADIN/WARFARIN FOR LIFE

I’m still being regulated on the Coumadin, and I’m having a little bit of problems with that – my levels WERE too high, and they worried about me bleeding internally now, so we’re having to be careful and monitor that very closely while I’m 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 time they lowered my dosage, and now we think I’ve thrown another clot from my right leg, so it looks like my levels might have to be increased again. I’ll find out in a couple of days. I think I go into the PC and the endo on Tuesday.

The paperwork they’ve given me scared me. I read things like this: “In Dr. Weber’s 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.”

I was just discharged when I read that. I hope I’m still around in three months, eh?

Or what about this: “About 15% of all cases of sudden death are attributable to PE…”

That’s scary stuff.

CONGESTIVE HEART FAILURE & PULMONARY ARTERIAL HYPERTENSION

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’s hypothyroidism, and who knows what else… I don’t know. Mostly, I’m so frustrated with the slowness of my recovery. I told the primary care doc I met with last week, “I was surprised by how weak I was when I got home…” She says it’s normal. She says to give it time. But the more time I give it, the worse things seem to be.

The hardest part right now is that we still don’t know much of anything. Don’t 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’s 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’t be here now. But they’ve been so busy dealing with the acute pulmonary embolisms, that we haven’t had much time to worry about the underlying causes of the problems I’m having.

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’s so much more left to do, to learn about my health, to figure out. Anxiety is high right now. I don’t know, do I push myself so I am strengthened or do I not push myself so I don’t 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’t know these things. We’re 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.

I thought this was kinda cool - I was radioactive!

Anyway….

IF YOU’VE BEEN WONDERING

So I do apologize to those who have been wondering and who have sent me emails and asked questions. I’m a bit numb and confused and worried about things, and I don’t know how to take all the stuff I do know or what to do with the stuff I don’t know yet. I’m scared and yet I’m okay too. I don’t know. I’m tired, mostly. I’m tired all the time. I can’t ever quite catch up with that feeling of being rested. My body doesn’t want to do what I tell it to do, and that just kills me. I can’t focus, can’t concentrate, can’t think and can’t write… that sucks. The can’t 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’t even walk to the car to go. So yes, I’m feeling a bit sorry for myself, when I’m not feeling numb and just staring at the wall.

I never expected to feel so weak… so helpless… so not me. I’m tired. I’m so very, very tired.

But I’m not giving up. I never do. I just… I just need time, right?

So if you’ve made it this far, thanks for caring and listening. I’ll likely share more next week when I meet with the docs. It’ll be a whole day at the clinic seeing multiple specialists, so it’ll be a long, hard needle-poking day for me.

Love you all and thank you for staying with me through all these struggles… I’m hanging on!

Love and stuff,
Michy

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Comments

comments

30 comments to And Then I Almost Died…

  • AnnaB  says:

    Praying that these doctors will be able to help you get all the way well, and very soon.
    I hope you have a very good weekend.
    I’m sorry you’ve been so sick, but I am glad that you have found some doctor’s who are listening, that is something that can be so hard to do especially with no insurance.

    • admin  says:

      Thank you again, Anna. (HUGS) I appreciate all the love and good wishes!

  • Angela Young  says:

    Hey, I’m so glad someone was watching out for you and you finally got the help you need. I am praying for you. I have several “and then I almost died” stories, and yes, most have to do with health people not listening. And I had insurance!!!! I am in recovery from a long period of major health issues that I’ve struggled with since 2002 and a bad exerience. I am going to take you up on your suggestion and write about it. I think I am finally at the place where I can without wanting to hurt anyone lol. ANyway, thank you for sharing your story. I hope you will be around for a very long time to share different kinds of stories:)

    • admin  says:

      Angela, writing about it as I’ve been going through it has helped me a lot. Connecting with people like you who have experienced similar things has helped too, in that I know I’m not alone and it’s sad that we have to feel that way. When/if you do write about it and share it, let me know, and I’d be honored to read your stories too.

  • Chris Carmichael  says:

    Sending big heaps of positive healing energy your way, filled with a lot of love, Michy!

    • admin  says:

      (waving) Hi, Chris! I haven’t talked to you in forever! I miss you, honey! How the hell are you?

  • Rissa Watkins  says:

    Oh Michy! I am so happy you went to the ER when you did! And I am happy you are finally getting better and getting answers.

    I hate that you have to go through this though. I wish I could take some of it from you. You always have my prayers and love.

    Thank you for keeping us updated, it must have been so hard to write this.

    Love you and stay alive dammit. I won’t lose you too.

    • admin  says:

      Yeah, Rissa, I’m guessing I’m glad I went when I did too. Looking back on it, Lynn’s right, I should have gone sooner. In the future, I will not go in on a Friday though. Seriously, they couldn’t do a lot of the stuff they wanted ’cause no one was in the labs/units. But they were able to monitor me and get me on telemetry and heparin, which likely saved my life… so that’s good. But in the future, if I have to go in again, I’ll try to do it on a weekday! LOL

      I hate going through it. You know, the other day, I said, “I’ll get better, because, you know, things like this don’t happen to me…”

      Then I started laughing until I started crying, when I realized, “Uh, it’s been happening to me for the past four or five years!”

      (shaking head) It’s funny how when you’re going through it, it doesn’t quite seem real. You know, I thought about you some when I was in the hospital and they were digging around looking for veins to put the PICC line in. I thought, “If Rissa can get bone marrow taps and spinals and fluid sucked out of her lungs and all that other stuff… I can handle them digging around a little in a mostly numb arm for a PICC line!” Still didn’t help – they never were able to get the PICC line in. (pout)

      I don’t want to lose me, Rissa. If I have any say in it, I plan to live forever!

  • Linda  says:

    All I can do is send prayers, and it seems so inadequate. I’m sorry you have to deal with all of this. I know you are a strong and determined lady. I’m hopeful that you will see improvements and get your life under control again.

    My father had a blockage in his leg and threw a clot. They went in and put some kind of screen in his vein to prevent any further clots from getting to his lungs. He never had any issues with clots after that. If he threw any, they’d stick on the screen and the blood thinners dissolved them. You might ask if this procedure can be performed on you. If they know where the blot clots are coming from (legs, pelvis) they should be able to put the screen in the appropriate vein to prevent them from reaching your heart/lungs. I don’t know what the procedure was actually called.

    Thank you so much for keeping us updated. I check on your facebook page frequently and of course check in at the forum as well.

    • admin  says:

      Linda, prayers and love are worth more than you can possibly imagine. I’m so humbled to have so many people praying for me. I just learned tonight that the man who is training my dog for being a medical assist dog has his church praying for me too. You guys, his church, my FB friends, my family, strangers… all praying for me. I mean, I believe in the power of prayer and positive energy and thoughts… it helps me, it calms me, and it puts good energy into the world as a whole too. Don’t think that’s inadequate at all.

      I’ve actually read about the filters that they use. If they are coming from the pelvic area, they put it in the main abdominal artery, and if they are just the legs, they can do it in the legs. Right now, I’m not a good candidate for it because of the excess fluid, the addison’s (I’m on steroids and surgery on steroids isn’t the safest thing), and because of my current weight. Surgery would be risky for me, but then, so are clots. It is, however, something we’ve read about and will be talking to the doc about too.

      Right now, it hasn’t even been two weeks since I’ve been released from the hospital and we’ve still not even talked about what the echo actually means – I’ll be learning that on Tuesday. WE’ve been too busy putting out fires instead. But once I know more, we’ll know what direction they want to take this.

      I’ll do better at updating in the future… I just needed some time to pull back to myself for a bit. I’m glad I posted today though. I forgot how much the comments and love and support from you guys means to me. I mean, I knew it, I know it, but it’s nice to be reminded just how much. Thank you!

  • Beth  says:

    I’ve been frightened for you for such a long time now. I know you know this because I kept dogging you, and I apologize for that.

    I know you’re tired and I know you’re scared, but please, do whatever you can to keep looking forward. You have a future. You do. And it is brighter than what you’re going through now–you just have to keep going.

    If you need to cry or yell or pray or damn the world around you, do it. All of it, if that’s what you feel. Just keep looking forward.

    I’m not sure that you could possibly understand just what you mean to some of us. To me. You matter, and this horrible, painful, terrifying, bullshit, hideously unfair time that you are experiencing right now just sucks, but it is temporary.

    Be weak when you need to, but underneath that, stay strong. You can do this. ♥

    • admin  says:

      Thanks, Beth. I too believe I have a future. The one thing that keeps me from really just breaking down and giving in to the anxiety is that I’ve had a vision of my future. In that vision, I was still in the wheelchair, but I could also stand too (I moved from the chair to a stool in the vision), and in that vision I was thinner than the swelling/edema makes me now… I was happy, and mostly healthy too. I’ve seen it. It’s not like a dream, but it really was like a vision… and somehow, something in my heart and soul knows that that vision is going to happen – and it’s in my future. I hold on to that, because it does give me hope. I especially try to recall that when the breathing is really difficult and the anxiety really gets high.

      And you haven’t been dogging me. You and Lynn and a few others have been the voice of reason. It’s hard when you’re hurting, in pain, exhausted, and you know that going in means poking and prodding and pain and strangers all over you and you won’t sleep… and and and… it makes you make bad choices, and it’s those with more level heads who have to help push you to make better ones. So thank you for that – don’t ever apologize to me for caring so much!

      Thank you. I CAN do this. It’s not easy, but you’re right, I can do it. I WILL do it.

      • Beth  says:

  • Raiscara  says:

    Oh hellfire and damnation honey! I’m going to be sending you every bit of good juju and healing energy I can muster. You’re like another mother as well as a friend to me, and I just don’t feel that this is the end for you…not yet. I really wish that it hadn’t taken something THIS scary to get the doctors to finally start listening to you. I’m here if you ever need to talk, no matter what…online, or hell I’ll even give you my number! :p (Hugs)

    • admin  says:

      Hey, I agree with you – it’s not my time. Too many best-selling books to write, right? Plus, I can’t die before everyone on the forum has their own book out in print and has achieved whatever level of success they desire! So as long as new members keep coming to the board, I’ll get to live forever!

      Thanks for the juju juice! I love good juju! You’re very sweet and it’s so good to have you back around the forum again (HUGS)!

  • Jo Heroux  says:

    I know you don’t know me, but I have seen so many comments and quick chats with you and other members, I just had to jump in here and say how obviously special you are to so many people and HEY I want a chance to get to know you, too.
    This was such an honest and out there piece and I feel every bit of your torture but I also feel every bit of your determination and desire. You were rescued by angels and I don’t think they were just bored that Friday. You aren’t done here yet, not by a long shot. Can’t wait to get to know you better. <3

    • admin  says:

      Jo, I see you are a writer too? Honored to meet you! Honored to get to know you too! I think you’re right. No, I KNOW you’re right. I’m NOT done here yet. I’ve also started writing a nonfiction book I had never anticipated writing, about the journey of navigating the medical community, both with and without insurance, but also when the illnesses are ‘invisible’ as so many of them are these days, at least in the beginning. It’s been a journey that I think others have or will travel, and maybe it will help someone.

      I’m off to your blog to read and get to know you better! So very nice to meet you!

  • Heather  says:

    Oh, Michy. What a horrible journey. I’ve been praying for you and your family, that you’ll have some relief from your discomfort, much needed rest and healing. <3

    • admin  says:

      Heather, thank you. (HUGS) prayers and positive energy and good thoughts have been what’s carried me through this. They mean so much to me, so very much… thank you for adding your own to my healing! I KNOW it’s making a difference!

  • gigahound  says:

    Yikes, that last picture of your foot looks a lot like mine did before I started my sleep apnea treatment. One of the side affects of the long-term apnea produced diabetic symptoms (but a diabetes test turned up negative) and some hardening on my heart, which contributed to the fluid issues and the swelling feet. Someday I need to go in for a follow-up to see how much improvement I’ve had, especially the heart thing. But I feel great with the treatment I already have. Just wanted to share that at a small level, I know some of what you’ve endured. I think it’s interesting how many things can happen with an untreated heart condition.

    It sounds like you’ve FINALLY got some idea of what’s been wrong with you all this time. And really, all sorts of things could have contributed to the original heart problem, for me it was just from not sleeping well…sounds crazy.

    Peace!

    • admin  says:

      Doesn’t sound crazy at all to me. I know, just from my own experience, that I feel much better and do much better when I can sleep better. I don’t have apnea, but I do have some nighttime hypoxia still, and that affects the quality of sleep. Nights I ‘dream less’ I feel better when I wake. I hate sleeping. It makes me achy and tired and groggy, but when I do get enough quality sleep, I feel so much better and the fluid comes down so much faster too.

      My BFF, as you know, also has sleep apnea. She was having trouble with metabolism, regulating medications, swelling and weight gain and more too – just like you. Her CPAP literally has saved her life. It’s just amazing how much sleep affects.

      The heart stuff is new to me… I”m hoping it will go away! Go get yours checked, see if it’s improved. It’s important to stay on top of these things and not let them go too far, because it may take a while for the docs to DO anything!

  • Melanie  says:

    Michy, you’re not allowed to die, like… ever. We need you too much. The world needs more people like you in it.

    Thank god for doctors who care, or at least find you interesting ;). Six gazillion well wishes and prayers flying your way from everyone who knows you has got to help.

    • admin  says:

      Melanie, I love that… because that’s what I told Lynn the other day: I’m so glad the doctors at UTMB find me interesting! LOL Thank you, honey (HUGS) I love ya!

  • Lea Ann  says:

    Oh sweetie, this was heartbreaking to read. I am a strong believer in visualization and your vision is a good and strong one. Prior to my 360 degree back fusion, one of my doctors asked me what i wanted my world to look like after the surgery and to keep that vision alive throughout my recuperation. I visualized myself dancing, and at the time I couldn’t even stand, so it was a loft goal. Post surgery I did every exercise the suggested, ate healthy and kept the vision. It worked. I CAN dance and you will too.

    I love you from the bottom of my heart, you gave me a safe place to learn and grow and I’ll always be grateful for that.

  • Lindsay Maddox  says:

    Michy.

    I realized at the end of this post that I had been clasping my hand over my mouth the entire time, my body tense, my insides twisted in complete sadness and disbelief. I have been thinking about you so much recently. Something in me *knew* things were not good at all. Out of nowhere, about a week ago, I told Clint, “I’m worried that Michy is going to die.”

    You won’t, though. I won’t believe it. Not in three months. Not in three years. You are a fighter. You are here to remind us how fragile life is and to show us how worth it is to keep fighting, even when things seem the most bleak. You are an incredible person. Please, keep fighting.

    ~L

    • Michy  says:

      Lindsay, I couldn’t respond to your post immediately after you made it, because I was not in a good place to do so. I have heard so many stories of people who have died with less problems than I have in this area. It’s scary. But you’re right… I won’t believe it either. I’m already better than I was… I hope to keep getting better.

      I will NEVER ever stop fighting, though… promise.

  • Jo Brielyn  says:

    Well, I read this on the day you first posted it but have held off commenting because, darn it, I just haven’t been able to find the words… That doesn’t happen to me very often!

    Michy, I have been following your journey since I first met you on AC and your forum back in the beginning of 2008. I’ve known a lot of tough people in my life (military background and all), but you constantly amaze me with your strength and courage. Being brave doesn’t mean you never feel scared or hopeless (’cause some of the crap life throws at us is terrifying and wear us down). True bravery and strenght come when you’re scared out of your wits and face it anyway.

    In spite of all you deal with everyday, you still focus on others: mentor them, encourage them, and worry about them. That says volumes about you. You’re a survivor and a fighter. You have too much to live for, to still accomplish with your life and amazing talents. Plus, I can’t bear losing anyone else that’s special to me, so you HAVE to stick around for a very long time.

    I love you and appreciate you more than you’ll ever know,
    Jo

    • Michy  says:

      Jo, it’s the people you say I’m mentoring and encouraging that keep me going. It’s easier sometimes to ‘worry’ about others than to ‘worry’ about yourself. For me, this comes easily.

      I don’t consider myself brave though. I guess I just do what I have to do… we all do that!

      I love you and appreciate you too, and I feel so blessed to have you in my life in this way! You’re awesome!

  • Molly B  says:

    Michy,
    I just had a chance to read this and am so happy that some questions are finally being answered. I just went to a funeral a week ago of a 37 year old friend who died of a PE. He’d had leg pain and chest pain for months, went to the doctors, had the stress tests, etc. and was diagnosed with walking pneumonia. He leaves behind a wife and two young kids still asking Why. Big healing hugs to you.

  • Michy  says:

    Molly, that’s almost what was happening with me. The just didn’t suspect it, so they didn’t check. They did x-rays, said my lungs sounded clear even… and there I was with massive multiple embolisms in both longs and an active DVT in both legs… it was crazy. Hearing stories like the one of your friend… it both terrifies me and makes me feel grateful too. I’m very lucky and very glad to be alive.

    Prayers and good thoughts and positive energy for your friend and his family. I’m so sorry for his loss.

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