Let me start by stating that unprovoked clots in your lungs - meaning there is no cause that can explain their presence - is truly a shitty deal. I am the girl who wants answers to everything. The girl who disassembled my curling iron in high school because I wanted to know how it worked. The girl who needs to know everything about everything so I can project plan the shit out of it then make appropriate entries into my calendar like marching orders to follow precisely. How else can I accomplish everything I ever want to in life? Not knowing where we go from here is truly fucking with my brain.
But I'm getting ahead of myself...
Immediately following my diagnosis I was focused on getting from day to day. The shock of almost dying was surreal and I still don't really know how I feel about how close I could have been. My first goal was getting my anti-coagulation established. Those super expensive injections I had to give myself twice a day hurt like hell and my first personal aspiration was to quit having to take them. Which meant my INR test had to be above a 2.0. Three times a week I stop in at my doctors for a finger prick to test this. The day after diagnosis, I was .9. A week and a half later I was above two after once having to increase my daily dose of Coumadin. Finally no more shots! That same week and a half had me feeling better with a bit more spring in my step every day. Two days post diagnosis I couldn't walk through Scheels without needing a bench to rest. But, two weeks later, I went for my first run. I could only run a couple of minutes at a time with stretches of walking in between but it felt like I was running my first race and accomplishing a personal record. The smile on my face was ear to ear. This was irrefutable evidence that the clots in my lungs are disappearing and I'm almost all better.
Now let's talk about Coumadin and what it means to be anti-coagulated. It sucks hairy-ass monkey balls. I'm a bleeder now who bruises easily. That hangnail I absently picked at during a meeting? Oh, don't mind me with blood dripping off my finger. No, officer, my husband doesn't beat me, I just ran into the bar stool someone left pulled halfway out and I'm anti-coagulated. All those other bruises? Yeah, I have no idea how they got there but I swear no one is beating me. Worse than all that is the dietary restrictions. I can't eat leafy green vegetables? No spinach? No lettuce? No broccoli? No asparagus? Are you fucking kidding me? Do you know how hard it is to take a brain that is wired for nutrition and real food and then suddenly you can't eat it? At least three times in the last week I've gone to bite into a delicious meal only to realize it had something in it I can't eat. Thank god I didn't have to alter anything about my coffee habits. Had that happened on top of everything else I might be murderous rather than just bitchy.
Which brings us to the shitty deal I'm facing now that I'm out of the woods and getting back to my normal activity levels: There is no end in sight for the Coumadin. When I tried to nail down my doctor with a time frame to expect this to continue he said "at least six months but more likely longer." So now I'll be a runner who can't eat her veggies and who might bleed out if she doesn't check her clotting factor twice a week and gets a bruise. Ain't that just grand. And why? Because no one knows exactly what caused my blood clots in the first place. Even though I was taking birth control after the age of 35 which actually states it can increase the risk for exactly this to happen. On the bright side, I can run again. Oh, and I hit my deductible on my high deductible healthcare plan so now I can get that IUD that I couldn't afford to pay for out of pocket and which started this whole fucking mess for free. At least I can still run...
Saturday, November 17, 2012
Saturday, November 3, 2012
I have a what?
I'm not a sappy person so it won't surprise you that not only am I not participating in the 'thankful challenge' that it seems half my Facebook friend list is doing but that I tend to scan over those posts as they come across my news feed. Not that I'm heartless but that it is all the same thing: family, friends, other loved ones, etc. In my world being thankful for those things happen and are expressed all year, not just the month of November in some new gimmick to twist the whole Thanksgiving holiday into something other than commemorating how we gained the trust of the Native American indians and then savagely stole their lands. But I digress and that's a rant for another day.
However, today I'm actually thankful to be alive because I literally almost died. Here's what happened so all the people expressing well wishes on my Facebook feed can have the entire story...
Like all stories, I have to start at the beginning which I didn't know at the time was the beginning. On October 20th, I ran a 5K with my friends who had both been training hard. He for a third Ragnar this year, she as a new and committed runner with a set workout plan that this race was a milestone in. I had been slacking hard and actually hadn't run since the last race we had run together as a relay team the month before. I figured the last time I'd run it had been six miles so a little three mile 5K shouldn't be too hard since it was only a few weeks between races. I knew she wasn't planning on running the entire time because at that distance she still does a little walking so I could just stick with her and run at her pace and be fine. We took off at the starting line and about thirty seconds later I thought I was going to die. My heart rate was through the roof, I couldn't catch my breath and my friend who I was supposed to be encouraging started pulling away. Because running is a mental sport, I started lamenting about what a loser I was that this 5K was kicking my ass and thinking back about all the times when I had time to squeeze in a run and instead decided I was too tired or prioritized something else in my life ahead of my fitness. Oh, and trying not to hate my friend who was a new runner and yet was running circles around me. It was the single hardest three miles I have EVER run both in terms of physical and mental toughness. I pushed myself to keep up, more or less, with my friend because I didn't want to hold her back and impact her goals after she had worked so hard actually preparing for this race. The whole way trying to ignore or not look at my heart rate monitor that said I was in the anaerobic training zone even though I was running slower than my normal pace and walking probably more than half the time. *Hello, red flag number 1* We finished together and laughed when we both - plus her twenty-something daughter who left us all in the dust at the start line - all placed in our divisions and got medals. I left the race vowing to get a race goal on the horizon so I'd have something specific to train for and didn't slip even further behind in my running performance since clearly you lose your base far quicker than I thought. I wheezed and coughed the rest of the day which isn't abnormal since I'd just pushed myself super hard, right?. *Hello, red flag number 2*
I felt fine after a normal recovery time after a hard race and didn't think anything else about it. Until about a week later when I was working in the garden and ran up the stairs into the kitchen to break up a fight between the kids or some other such emergency. The little exertion had me out of breath. I stood at the counter trying to catch my breath when this weird pain started in the center of my chest. *Hello, red flag number 3 but the first one I paid attention to* I stood there realizing I was experiencing "shortness of breath with chest pain". I panicked and quickly passed that heading straight for denial. You see, my Dad has coronary artery disease as did my grandfather before him. Dad had a quadruple bypass as a direct result of shortness of breath and chest pain that his doctor luckily investigated aggressively because of his family medical history before he had a heart attack. I am a runner obsessed with making better than average food choices as a direct result of my insane fear that that shit is going to happen to me, too. I stood there, taking deep breaths, collecting data and rationalizing that the pain was not on the right side of my chest but in the center and also kind of in the back. Totally not my heart and probably just a fluke. Told you, total denial fueled by panic. Don't judge.
While in the front of my mind I was denying that there could be a problem, the analytical side of me was hard at work in the background keeping track of little things that started not to add up. Like it was harder to walk from my car to the building and vice versa at work, that I couldn't take the stairs at work without sounding like I was a four hundred pound fat girl ready to puke after my first Biggest Loser workout, that I was lethargic at night and had started to just sit on the couch instead of accomplishing anything every night. Part of me was still being really hard on myself for having put on a couple of pounds recently and feeling like a total fat girl even though I'm still in my same size clothes. The inner workings of the female psyche at its worst right there. When I had a second episode of chest pain a couple of days later *Hello, red flag number 4* I mentioned it to Hubby. Although the part of me that was still in denial mentioned it offhand with a little joke about "hey, I should probably tell you just in case something happens . . ha ha ha . . . I'm probably making a big deal out of nothing because of Dad . . . blah blah blah". But I did tell him I was going to make an appointment with the doctor at some point.
The night before Halloween I was going through Baby Sister's night time routine which involves snuggling on the couch while she drinks her chocolate milk before carrying her to bed to tuck her in. I stood up from the couch, carrying my petite twenty five pound almost three year old, and walked twenty three steps to her room on the same floor of the house. And when I got there, I was so out of breath it took me almost ten minutes to catch it again. (Yes, I just recreated the event so I could count exactly how many steps it was, why do you ask?) *Hello, red flag number 5 which finally made me take action*
On Halloween, I called and made an appointment with Hubby's doctor since this wasn't something I could see my gynecologist about and that's the only doctor I ever go to. They could get me in the next day at 11:00 which in hind sight was probably because I told them I was having the "shortness of breath with chest pain" kiss of death symptoms. At lunch, I was telling my same friends I ran the 5K with that I was going to the doctor because I'd been having problems and he said he'd noticed that he'd had more cardiovascular difficulty in his training since we'd all had . . . dun dun duuun . . . THE FLU SHOT. Holy shit! I did the math and that was the same time frame I'd been having issues, too! I breathed a little tiny sigh of relief that there MIGHT be something else at play here than my impending need for a coronary bypass surgery which is what my mind was in full denial about. I mentioned it to one of my besties while we were strolling the neighborhood trick or treating and was out of breath after having to save the eleven-year olds from a stuffed scarecrow on a porch. We both laughed that wouldn't that be the shits that I'd been forced to get a flu shot and then I have these symptoms even though that might get me out of it for next year.
The next day began like any other Thursday. I'd been on call all night which meant I got to work from home. I let my team know I was planning on taking a little longer of a lunch break because I had a doctor's appointment but would be back in time for my afternoon support shift. I got right in, met the doctor and started answering his barrage of questions. Told him about my family medical history while I cringed inside because I hate that weakness looming in my gene pool like an unexploded, forgotten artillery round in a rice field of Vietnam waiting to go off at any time with no warning. I had written out a timeline of all my running milestones and things I'd done that involved significant physical exertion leading up to the 5K which had happened four days after I'd gotten the flu shot and what I'd experienced since the flu shot because surely it wasn't a coincidence that it all started then, right?
After the question and answer period was over, the doctor said they were going to do an EKG and a chest x-ray and handed me a gown. Are you kidding me right now? With those words, the shit got real and all the denial was replaced with visions of exactly where the path was leading which ended with me lying in an ICU bed with tubes coming out of my chest looking like death already - just like my Dad did after his surgery. Not going to lie, I was weepy and it took several minutes to pull my shit together before the first nurse came in to take me down the hall to the x-ray room. The EKG was a trip because it literally takes more time to set up for the test and get all the leads attached than it does to do the test. The doctor returned and said my xray was clear and the EKG showed that I had not had nor was I in the middle of having a heart attack. Both very good news and I perked up. Next steps: some blood work and a referral to a cardiologist for a stress test. Sorry, but the flu shot wasn't a factor at this point. Just what I knew they were going to say. Damn my gene pool anyway! The nurse came back in and drew seven - SEVEN - vials of blood and said they were sending them to the lab via courier so they would have results back today and would call me. Everything seemed super routine now and I figured my next step would be hearing my blood work was fine - like it always is - and getting a call from the cardiologist to schedule my stress test. I went home, ate some lunch and started my pager shift at 2:00.
Hubby was off that day so he was chatting with me and catching up on television when my phone rang at 2:30. I answered it and heard the nurse tell me that I needed to go immediately to the hospital, that they were waiting for me to have a CT scan at 3:00 because one of my blood tests that indicated through chemicals in my blood that I'd had a heart attack came back abnormally high. And that once I'd finished the test I was to stay there because there was a chance I was going to be admitted. I didn't say anything, just listened, and started crying uncontrollably, now certain that my vision of bypass surgery was inevitable regardless of what steps I had taken to eliminate the risk. Hubby rushed over and was now panicked because clearly there was something wrong and he didn't know what it was. I had the sense of mind to repeat what I needed to do so I was sure I'd gotten it right before I hung up with twenty minutes before they were expecting me at the nearest hospital.
Halfway there, as I'm already mentally saying goodbye to my husband and lamenting that I might not be around to see my girls grow up because of my fucking gene pool that even though I tried my damnedest I couldn't escape, the phone rang again. The same nurse was on the line apologizing that she'd given me inaccurate information. The blood test that was abnormal was NOT in fact the one indicating I'd had a heart attack but one that indicated I had a blood clot. All of a sudden I wasn't rushing to the hospital for an angioplasty and shunts in my heart and hopefully not but probably emergency surgery but *JUST* to figure out where I had a blood clot. WHEW! It was like magic how my mind cleared of KNOWING exactly what was happening based on my deepest darkest fears and I was back to feeling hopeful that this wasn't as bad, whatever it turned out to be.
It was kind of fun being a clinical patient in the hospital and seeing the applications that I support every day and the users that use them for their jobs. I got registered and filled out paperwork attesting that I wasn't pregnant . . . blah blah blah . . . and went back for my test. The radiology technician handed me a gown and said "so, you're the one with the impressive d-dimer test, huh?" It caught me off guard and it must have shown because he said "oh, wait, they didn't tell you?" Uh, no so now you better tell me I think! He wouldn't go any further than saying my levels were impressive and played it off that it had to be for me to be spending time with him. Half an hour later I'd lived through my first CT scan with contrast and hadn't peed my pants even though that's exactly what it felt like was happening when that crap got inserted into my blood stream. Now the waiting and more blood draws to see what happens now.
Before I could get dressed and walk across the lobby to the lab, my doctor was on the phone to discuss the test I'd just finished. Good news: you're not going to need to do that stress test because your heart is fine. Bad news: you have a pulmonary embolism aka blood clots in your lungs. Then there was a whole lot of talk about how usually you would be admitted and treated in the hospital but because your other test results came back normal and your blood pressure and blood oxygen levels are normal you're a low risk of dying so you can have the choice to be treated at home. Most of this went right over my head because I was still in shock about what I'd been diagnosed with. Next steps: more blood draw to test the clotting factor in my blood, pick up prescriptions for anti-coagulation meds to start immediately then back at the hospital at SEVEN AM for ultrasound of the veins in my legs and immediately back to the doctor to discuss treatment.
No longer was I stressing about how my life was going to be limited to ten to fifteen years of struggling with coronary artery disease and early death before my children were grown, now my death had barely been missed and I was still in potentially immediate danger of dying right now. Very staggering to say the least. I tried to convey the information to Hubby while I got my labs drawn and my IV which I wasn't going to need further after all removed so we could go to the pharmacy. If I wasn't already in enough shock at this point, the co-pay for one med I'd been prescribed which was the equivalent of a heparin IV drip and which makes my outpatient treatment an option came to TWELVE HUNDRED DOLLARS. Thank god it's October and I've had a full ten months to build up my Health Savings Account so I could just swipe the card and smile like I wasn't freaking out. What else could I do, right?
We headed home, I gave myself my first injection of anti-coagulation medication and tried to relax. Which I couldn't do so I took my mind off of things by doing a little writing. I mean, it IS November which means I had a daily word count goal I needed to hit for NaNoWriMo. I went to bed at eleven even though I had to be up at an ungodly hour to get back to the hospital the next morning for more tests.
The ultrasound on my legs showed no clots in any of my veins which on one hand is very good news because there are no more clots waiting to break free and head for my lungs to choke my life potentially from me. However, it means we still don't have any real indication of how or why I got the ones I already have.
Here's where I sing the praises of my new, and officially declared as mine, primary care physician. Dr Zimmerman sat in the exam room with me for an hour and a half explaining what all this meant, what all my lab results showed, what being on anti-coagulation medication meant, what possible factors could have contributed to this "unprovoked" clot, and answered every single question I had. While all the people he had double booked me on top of waited I'm sure. If anyone needs a good doctor, I've got one I can recommend! That 'impressive' d-dimer test the radiology technician mentioned? A high is anything over 500, mine came back at 13,000. Yep, pretty impressive. During this chat, I heard lots of stories about people who ignored their warning signs and are dead because of it. People who were hospitalized for treatment and died anyway. Very staggering stories considering I ignored at least one of my super early warning signs. I'm choosing to focus on how lucky I am to have coronary artery disease in my immediate family which I live in fear of developing and how glad I am for being very in tune with my body enough to recognize that there were subtle things not quite right that got me to the doctor.
Now I'm living with twice a day injections and twice a week blood testing until my anti-coagulation dosing gets stablized so my body doesn't make more clots while the clots I have dissolve. And watching for any signs that I need to go to an ER. As my amazing doctor said, I'm still a patient in the hospital in his mind even if I'm not physically in the hospital environment. I hate every minute of having to take things slower because I can't physically do everyday normal things. Today I carried a laundry basket from the bedroom to the laundry room and needed to rest. Stood at the kitchen sink to load the dishwasher of dirty dishes and had to take a three hour nap when I was done. But, I'm still alive so I won't bitch too much about any of it. The clots, which are in both lungs, are basically cutting off half of my air supply so everything I'm going through is expected.
The best news at the end of the day is that once my lungs are clear of clots in the next couple of weeks I can start running again and doc doesn't think my planned half marathon in the spring is too aggressive a goal to shoot for. I told him this was a pretty expensive episode of "check with your doctor before beginning any new exercise program" but that I was really glad I'd done it. There are still no answers as to what caused these clots to form in the first place which irritates that part of me that wants clear and definitive answers to file away so I can avoid whatever it is so it doesn't happen again and eventually quit taking anti-coagulation meds that come with even more risks long term. Personally, I still suspect that damn flu shot as being a contributor plus the birth control pills I've been on for ten months that "increase the risk of blood clots in women over 35". But, for now, I'm focusing on taking it easy so my body can heal and life can return to normal.
However, today I'm actually thankful to be alive because I literally almost died. Here's what happened so all the people expressing well wishes on my Facebook feed can have the entire story...
Like all stories, I have to start at the beginning which I didn't know at the time was the beginning. On October 20th, I ran a 5K with my friends who had both been training hard. He for a third Ragnar this year, she as a new and committed runner with a set workout plan that this race was a milestone in. I had been slacking hard and actually hadn't run since the last race we had run together as a relay team the month before. I figured the last time I'd run it had been six miles so a little three mile 5K shouldn't be too hard since it was only a few weeks between races. I knew she wasn't planning on running the entire time because at that distance she still does a little walking so I could just stick with her and run at her pace and be fine. We took off at the starting line and about thirty seconds later I thought I was going to die. My heart rate was through the roof, I couldn't catch my breath and my friend who I was supposed to be encouraging started pulling away. Because running is a mental sport, I started lamenting about what a loser I was that this 5K was kicking my ass and thinking back about all the times when I had time to squeeze in a run and instead decided I was too tired or prioritized something else in my life ahead of my fitness. Oh, and trying not to hate my friend who was a new runner and yet was running circles around me. It was the single hardest three miles I have EVER run both in terms of physical and mental toughness. I pushed myself to keep up, more or less, with my friend because I didn't want to hold her back and impact her goals after she had worked so hard actually preparing for this race. The whole way trying to ignore or not look at my heart rate monitor that said I was in the anaerobic training zone even though I was running slower than my normal pace and walking probably more than half the time. *Hello, red flag number 1* We finished together and laughed when we both - plus her twenty-something daughter who left us all in the dust at the start line - all placed in our divisions and got medals. I left the race vowing to get a race goal on the horizon so I'd have something specific to train for and didn't slip even further behind in my running performance since clearly you lose your base far quicker than I thought. I wheezed and coughed the rest of the day which isn't abnormal since I'd just pushed myself super hard, right?. *Hello, red flag number 2*
I felt fine after a normal recovery time after a hard race and didn't think anything else about it. Until about a week later when I was working in the garden and ran up the stairs into the kitchen to break up a fight between the kids or some other such emergency. The little exertion had me out of breath. I stood at the counter trying to catch my breath when this weird pain started in the center of my chest. *Hello, red flag number 3 but the first one I paid attention to* I stood there realizing I was experiencing "shortness of breath with chest pain". I panicked and quickly passed that heading straight for denial. You see, my Dad has coronary artery disease as did my grandfather before him. Dad had a quadruple bypass as a direct result of shortness of breath and chest pain that his doctor luckily investigated aggressively because of his family medical history before he had a heart attack. I am a runner obsessed with making better than average food choices as a direct result of my insane fear that that shit is going to happen to me, too. I stood there, taking deep breaths, collecting data and rationalizing that the pain was not on the right side of my chest but in the center and also kind of in the back. Totally not my heart and probably just a fluke. Told you, total denial fueled by panic. Don't judge.
While in the front of my mind I was denying that there could be a problem, the analytical side of me was hard at work in the background keeping track of little things that started not to add up. Like it was harder to walk from my car to the building and vice versa at work, that I couldn't take the stairs at work without sounding like I was a four hundred pound fat girl ready to puke after my first Biggest Loser workout, that I was lethargic at night and had started to just sit on the couch instead of accomplishing anything every night. Part of me was still being really hard on myself for having put on a couple of pounds recently and feeling like a total fat girl even though I'm still in my same size clothes. The inner workings of the female psyche at its worst right there. When I had a second episode of chest pain a couple of days later *Hello, red flag number 4* I mentioned it to Hubby. Although the part of me that was still in denial mentioned it offhand with a little joke about "hey, I should probably tell you just in case something happens . . ha ha ha . . . I'm probably making a big deal out of nothing because of Dad . . . blah blah blah". But I did tell him I was going to make an appointment with the doctor at some point.
The night before Halloween I was going through Baby Sister's night time routine which involves snuggling on the couch while she drinks her chocolate milk before carrying her to bed to tuck her in. I stood up from the couch, carrying my petite twenty five pound almost three year old, and walked twenty three steps to her room on the same floor of the house. And when I got there, I was so out of breath it took me almost ten minutes to catch it again. (Yes, I just recreated the event so I could count exactly how many steps it was, why do you ask?) *Hello, red flag number 5 which finally made me take action*
On Halloween, I called and made an appointment with Hubby's doctor since this wasn't something I could see my gynecologist about and that's the only doctor I ever go to. They could get me in the next day at 11:00 which in hind sight was probably because I told them I was having the "shortness of breath with chest pain" kiss of death symptoms. At lunch, I was telling my same friends I ran the 5K with that I was going to the doctor because I'd been having problems and he said he'd noticed that he'd had more cardiovascular difficulty in his training since we'd all had . . . dun dun duuun . . . THE FLU SHOT. Holy shit! I did the math and that was the same time frame I'd been having issues, too! I breathed a little tiny sigh of relief that there MIGHT be something else at play here than my impending need for a coronary bypass surgery which is what my mind was in full denial about. I mentioned it to one of my besties while we were strolling the neighborhood trick or treating and was out of breath after having to save the eleven-year olds from a stuffed scarecrow on a porch. We both laughed that wouldn't that be the shits that I'd been forced to get a flu shot and then I have these symptoms even though that might get me out of it for next year.
The next day began like any other Thursday. I'd been on call all night which meant I got to work from home. I let my team know I was planning on taking a little longer of a lunch break because I had a doctor's appointment but would be back in time for my afternoon support shift. I got right in, met the doctor and started answering his barrage of questions. Told him about my family medical history while I cringed inside because I hate that weakness looming in my gene pool like an unexploded, forgotten artillery round in a rice field of Vietnam waiting to go off at any time with no warning. I had written out a timeline of all my running milestones and things I'd done that involved significant physical exertion leading up to the 5K which had happened four days after I'd gotten the flu shot and what I'd experienced since the flu shot because surely it wasn't a coincidence that it all started then, right?
After the question and answer period was over, the doctor said they were going to do an EKG and a chest x-ray and handed me a gown. Are you kidding me right now? With those words, the shit got real and all the denial was replaced with visions of exactly where the path was leading which ended with me lying in an ICU bed with tubes coming out of my chest looking like death already - just like my Dad did after his surgery. Not going to lie, I was weepy and it took several minutes to pull my shit together before the first nurse came in to take me down the hall to the x-ray room. The EKG was a trip because it literally takes more time to set up for the test and get all the leads attached than it does to do the test. The doctor returned and said my xray was clear and the EKG showed that I had not had nor was I in the middle of having a heart attack. Both very good news and I perked up. Next steps: some blood work and a referral to a cardiologist for a stress test. Sorry, but the flu shot wasn't a factor at this point. Just what I knew they were going to say. Damn my gene pool anyway! The nurse came back in and drew seven - SEVEN - vials of blood and said they were sending them to the lab via courier so they would have results back today and would call me. Everything seemed super routine now and I figured my next step would be hearing my blood work was fine - like it always is - and getting a call from the cardiologist to schedule my stress test. I went home, ate some lunch and started my pager shift at 2:00.
Hubby was off that day so he was chatting with me and catching up on television when my phone rang at 2:30. I answered it and heard the nurse tell me that I needed to go immediately to the hospital, that they were waiting for me to have a CT scan at 3:00 because one of my blood tests that indicated through chemicals in my blood that I'd had a heart attack came back abnormally high. And that once I'd finished the test I was to stay there because there was a chance I was going to be admitted. I didn't say anything, just listened, and started crying uncontrollably, now certain that my vision of bypass surgery was inevitable regardless of what steps I had taken to eliminate the risk. Hubby rushed over and was now panicked because clearly there was something wrong and he didn't know what it was. I had the sense of mind to repeat what I needed to do so I was sure I'd gotten it right before I hung up with twenty minutes before they were expecting me at the nearest hospital.
Halfway there, as I'm already mentally saying goodbye to my husband and lamenting that I might not be around to see my girls grow up because of my fucking gene pool that even though I tried my damnedest I couldn't escape, the phone rang again. The same nurse was on the line apologizing that she'd given me inaccurate information. The blood test that was abnormal was NOT in fact the one indicating I'd had a heart attack but one that indicated I had a blood clot. All of a sudden I wasn't rushing to the hospital for an angioplasty and shunts in my heart and hopefully not but probably emergency surgery but *JUST* to figure out where I had a blood clot. WHEW! It was like magic how my mind cleared of KNOWING exactly what was happening based on my deepest darkest fears and I was back to feeling hopeful that this wasn't as bad, whatever it turned out to be.
It was kind of fun being a clinical patient in the hospital and seeing the applications that I support every day and the users that use them for their jobs. I got registered and filled out paperwork attesting that I wasn't pregnant . . . blah blah blah . . . and went back for my test. The radiology technician handed me a gown and said "so, you're the one with the impressive d-dimer test, huh?" It caught me off guard and it must have shown because he said "oh, wait, they didn't tell you?" Uh, no so now you better tell me I think! He wouldn't go any further than saying my levels were impressive and played it off that it had to be for me to be spending time with him. Half an hour later I'd lived through my first CT scan with contrast and hadn't peed my pants even though that's exactly what it felt like was happening when that crap got inserted into my blood stream. Now the waiting and more blood draws to see what happens now.
Before I could get dressed and walk across the lobby to the lab, my doctor was on the phone to discuss the test I'd just finished. Good news: you're not going to need to do that stress test because your heart is fine. Bad news: you have a pulmonary embolism aka blood clots in your lungs. Then there was a whole lot of talk about how usually you would be admitted and treated in the hospital but because your other test results came back normal and your blood pressure and blood oxygen levels are normal you're a low risk of dying so you can have the choice to be treated at home. Most of this went right over my head because I was still in shock about what I'd been diagnosed with. Next steps: more blood draw to test the clotting factor in my blood, pick up prescriptions for anti-coagulation meds to start immediately then back at the hospital at SEVEN AM for ultrasound of the veins in my legs and immediately back to the doctor to discuss treatment.
No longer was I stressing about how my life was going to be limited to ten to fifteen years of struggling with coronary artery disease and early death before my children were grown, now my death had barely been missed and I was still in potentially immediate danger of dying right now. Very staggering to say the least. I tried to convey the information to Hubby while I got my labs drawn and my IV which I wasn't going to need further after all removed so we could go to the pharmacy. If I wasn't already in enough shock at this point, the co-pay for one med I'd been prescribed which was the equivalent of a heparin IV drip and which makes my outpatient treatment an option came to TWELVE HUNDRED DOLLARS. Thank god it's October and I've had a full ten months to build up my Health Savings Account so I could just swipe the card and smile like I wasn't freaking out. What else could I do, right?
We headed home, I gave myself my first injection of anti-coagulation medication and tried to relax. Which I couldn't do so I took my mind off of things by doing a little writing. I mean, it IS November which means I had a daily word count goal I needed to hit for NaNoWriMo. I went to bed at eleven even though I had to be up at an ungodly hour to get back to the hospital the next morning for more tests.
The ultrasound on my legs showed no clots in any of my veins which on one hand is very good news because there are no more clots waiting to break free and head for my lungs to choke my life potentially from me. However, it means we still don't have any real indication of how or why I got the ones I already have.
Here's where I sing the praises of my new, and officially declared as mine, primary care physician. Dr Zimmerman sat in the exam room with me for an hour and a half explaining what all this meant, what all my lab results showed, what being on anti-coagulation medication meant, what possible factors could have contributed to this "unprovoked" clot, and answered every single question I had. While all the people he had double booked me on top of waited I'm sure. If anyone needs a good doctor, I've got one I can recommend! That 'impressive' d-dimer test the radiology technician mentioned? A high is anything over 500, mine came back at 13,000. Yep, pretty impressive. During this chat, I heard lots of stories about people who ignored their warning signs and are dead because of it. People who were hospitalized for treatment and died anyway. Very staggering stories considering I ignored at least one of my super early warning signs. I'm choosing to focus on how lucky I am to have coronary artery disease in my immediate family which I live in fear of developing and how glad I am for being very in tune with my body enough to recognize that there were subtle things not quite right that got me to the doctor.
Now I'm living with twice a day injections and twice a week blood testing until my anti-coagulation dosing gets stablized so my body doesn't make more clots while the clots I have dissolve. And watching for any signs that I need to go to an ER. As my amazing doctor said, I'm still a patient in the hospital in his mind even if I'm not physically in the hospital environment. I hate every minute of having to take things slower because I can't physically do everyday normal things. Today I carried a laundry basket from the bedroom to the laundry room and needed to rest. Stood at the kitchen sink to load the dishwasher of dirty dishes and had to take a three hour nap when I was done. But, I'm still alive so I won't bitch too much about any of it. The clots, which are in both lungs, are basically cutting off half of my air supply so everything I'm going through is expected.
The best news at the end of the day is that once my lungs are clear of clots in the next couple of weeks I can start running again and doc doesn't think my planned half marathon in the spring is too aggressive a goal to shoot for. I told him this was a pretty expensive episode of "check with your doctor before beginning any new exercise program" but that I was really glad I'd done it. There are still no answers as to what caused these clots to form in the first place which irritates that part of me that wants clear and definitive answers to file away so I can avoid whatever it is so it doesn't happen again and eventually quit taking anti-coagulation meds that come with even more risks long term. Personally, I still suspect that damn flu shot as being a contributor plus the birth control pills I've been on for ten months that "increase the risk of blood clots in women over 35". But, for now, I'm focusing on taking it easy so my body can heal and life can return to normal.
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