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 one 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.

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