…Hi. Yes, it’s been a long time. Look, before all the CRAP in the below post happened, my pathetic excuses for not blogging since Christmas included “uninspired” and “distracted by other crap”. Now? Boy do I have a good excuse for not doing any writing! Of course, instead of rolling with that excuse, I’m gonna blog. Besides, you know you desperately need to find out why Grandpa over there has what looks like an ill-fitting bra.
See, I didn’t want to be the kind of friend who does a fb check-in at the hospital and lets everybody wonder why. Although when you’re alone and scared in an ER, no one is allowed to judge how you reach out for some human comfort, Facebook nonsense included. For instance, nobody better judge me for chatting up a male nurse about the fact that one set of blood test vials look like those tiny liquor bottles you can get at the store counter. I mean, were we having a party, or what? I also didn’t want to worry people unnecessarily, because ultimately I was FINE. I also didn’t (and still don’t) know all of what was going on.
I do like a good “saga” post, so I’d like to share what’s been up the past week or so. I should at least get a decent blog post out of this stupid situation, right? Right? Since this is a medical story, we’ll start with the ABSTRACT:
I thought I had bronchitis. Instead, I ended up spending 4 days in the hospital and finding out that, for who knows how long, my heart only works at about 50% strength. My diagnosis is dilated cardiomyopathy. Basically my left ventricle doesn’t work right; it’s stretched out, and kind of damaged. The official cause for this is unknown right now, but big scary reasons have been ruled out. The main complication I have is congestive heart failure. This is not as scary as it sounds, but thank you for that horrified gasp. I love you too. This week I had what I’m reasonably sure was roughly a million tests, and got stuck by two million needles. I’m home, and very stable now. There are some major diet and fluid intake changes I had to make, to help my heart work and get rid of the CHF (congestive heart failure). I’m taking a bunch of new meds that have left me feeling dizzier, but better. But, my heart still doesn’t work all that well. I also have to wear a vest-thing with wires and sensors in it, that acts as a heart monitor and defibrillator. These changes will continue indefinitely. I don’t feel symptom-free, but I feel way better than I did last Monday! I don’t know why I suddenly got sick with this. I don’t exactly know the prognosis is for my heart’s improvement, or what this means for the future. I think that’s a “time will tell” thing. The internet has scared the bejezus out of me; I am either feeling confident, or wondering if Web MD is right, and I should work on end-of-life papers. On the other hand, I’m otherwise pretty healthy with no additional heart problems and did I mention I’m only 33, and I’M SORRY but What The Hell is this CRAP?!?! Sorry. I know that was not a proper medical abstract.
So, have you ever noticed that you have no idea when symptoms really started, when you’re asked? I have no idea for how long, but I’d been getting out of breath walking around my school. I figured I’m just a fat-ass who used to run (knee injury) until a couple months ago. Then there was also this annoying cough. Bronchitis again? I’d been sick in the fall. Who knows. I work with kids, they have germs. Two Saturdays ago, we had the little one’s Mario-themed birthday party with 30+ people and way too many Pinterest-worthy ideas at my house. I’d been busting my very tired butt as much as I could. As it was, hubby was picking up my slack a lot, poor guy. Sunday night I didn’t feel good at all. Monday I almost called in sick. Interesting detail here: My favorite jeans wouldn’t fit that morning. I assumed it was, again, due to the fat-assery. Turns out this is a major symptom of CHF! During my teaching day I felt just plain awful, and decided to call my doctor. My husband says this is how he knew I was really ill. I couldn’t get through to the doctor during my lunch, so I went to the Minute Clinic nearby, thinking I’d get some antibiotics. When I got there I almost didn’t sign in for the clinic, and thought I’d just buy some cough drops instead. But there was no wait. The nurse at the clinic told me if I were her relative she’d just drive me to the ER herself, but I should get there ASAP.
Shocked and annoyed, I went to the ER at the hospital down the road, where the waiting room was very full. I should have been scared $h*tless when they let me waltz ahead of everybody. I had an EKG and saw something on the paper about “possible abnormal” but didn’t know what that meant. The (I thought, alarmist) nurse freaked out at my fast breathing and heart rate. Tests, tests, and more tests happened – blood, x-ray, CT scan, etc. Have you ever noticed that, in the ER, all these nice people come by and ask you the same twenty questions? Why the repetition? I wasn’t allowed to eat, drink, or get up to pee. (Yes, that’s what I mean, and I think this process was way more traumatic for my heart than just walking to the bathroom. #nodignity) I was not having any of this. I wanted outta there pronto, with my Amoxicillin. Then a doctor (or somebody?) opened my curtain door and said, “Call your husband. You are pretty darn sick.” The phrases “congestive heart failure”, “pneumonia”, and “admitted” were said to me, I’m pretty sure. She told me I wasn’t going anywhere. Shocked, but keeping it together, I am proud to report that I did not cry. #biggirl I wanted to, of course, because WHAT THE HELL?
Hubby came and helped a lot, and I sent him home because one of us should get some sleep. My mother in-law was home with the girls, thank goodness. There were no beds up in the regular hospital because a neighboring hospital was closing, so I spent a very fun night on a gurney in the ER . No, you can’t sleep in an ER, but they do have cable. I was also one of the lucky ones who had a little partitioned-off “room”. People were “sleeping” in the hallway that night, so I’ll just shut up. I also had a couple more tests during the night to rule out a heart attack, blood clots, and other terrifying stuff. I would have had the sense to be more scared if I weren’t sick and tired, so timing these tests during the night was brilliant. Dr. Extremely Serious Cardiologist (titled thusly not because of my condition, but his perpetually maudlin bedside manner all week – I hear it’s just him) first came in to discuss things with me around 8 AM Tuesday. Basically, he said “You do not have a cold. You are sick-sick, and we have to find out why. Buckle up.” (Ok, he did not say that last part. But he should have.) He started me on meds that had me on the way to feeling better in a couple hours.
Tuesday morning I had a echo cardiogram. It took about an hour, the room was quiet and dark, and I literally fell asleep on the table. It was awesome. I may have drooled on the technician’s arm. This test is basically one of those beautiful baby sonograms, but instead of finding out that you’re having a little girl, you find out that your heart is only pumping with about half the strength it should be and your already way-too serious cardiologist is now Worried About You. One wall of my heart was particularly weak, he said. My heart ejection fraction, something that should have been at 50%, was a 15%. Possible causes included artery blockage (!) and we would check for it with a heart catheterization. I kept getting flashes of the Homer-Has-A-Heart-Attack episode of The Simpsons, where he’s “just workin’ the turkey through”. However, Dr. Serious didn’t like the blockage theory, and instead thought it was either a virus that hit my heart hard and damaged it, or weakness caused by a pregnancy. I said my youngest just turned five two days ago, so that was crazy. He said he would put his money on that theory, and the condition was called “peripartum cardiomyopathy”. It could have been steadily getting worse all this time. Being younger and strong (thankyouvermuch), I could have been compensating for this weakness until now, when being sick, stressed, or both made me crash pretty fast. Well, everybody is young and strong until they’re not, right? Bob brought the girls in to see me Tuesday night. The big kid had a very hard day at school, worrying about Mommy in the hospital. The little one thinks hearts are what you draw on construction paper this time of year, so she was good.
Wednesday was “rest up” day, since Dr. Serious didn’t want me to have the cath procedure till I was feeling better and there was less fluid around my lungs. Hubby had taken off Tuesday but went into work this day, because he does have a job outside of me. I was told several times that day and throughout the week that I looked way too good to be that sick. Well in that case, can it all be wrong? Happily, several times during the day I had family or friends visiting. I had originally said NO to visitors, because of hospital gowns not staying tied. Plus, there is the terrified, wincing face I make when they stick me with needles ten times a day. Not something I want anyone seeing. Now, I’m very grateful family and friends came and brightened my room, and that I got texts and fb messages from people. I am a people-who-need-people person when I’m not worried and captive. I also insisted on wearing my own sweats, not the gowns, and was feeling slightly more human and dignified from then on.
Sent this to the hubby: “Makin’ this I. V. look GOOD.”
Thursday I was up early (actually, in a hospital, you’re up all the time) to be taken to another hospital, to do to the “simple” procedure that checked for blockage. I got to ride in an ambulance! This sounds fun, but in reality they let you wear nothing but a gown (cold), strap you to a gurney so you can’t wiggle your arms, and they do not put the sirens on for you. Yes, even if you ask. I had the “simple” catheterization procedure (I had a baby with no pain killers and I will still say ‘OW’ about this). I’m not going to tell you where they cut you and feed a tube up to your heart to release dye and take pictures, but OW OW OW. Yes, I had anesthesia, but later on: OW. No blockage, though, which was welcome news. Of course, we still had no real idea why my heart was being a wuss. After 4 hours of bedrest (I had decided that I was allowed to move around the room whenever I felt like, prior to this) I had lovely visits with my kids and hubby. When they left, reality started to set in, and my self-pity party began.
A technician from the “Life Vest” company came, and at first I had a lovely time talking to her. We had to have me wear the (damn) vest thing and plug it into a fax line to send the baseline data about my heart to the monitoring station somewhere out there. This took a while, and during this process I was hanging in an office chair in the nurse’s station, talking and laughing with women about my age, like we were all good friends. Except 3 of us were nurses and 1 of us was attached to the wall by this gorgeous thing:
Obviously designed for studs who prowl the 55 & older community like Jasper Oldman here, this lovely wearable heart monitor/defibrillator vest will bunch up, send out false positives and loudly threaten to shock you, and then get caught on everything as you wear it throughout the day. Yes, all day. And all night. It also comes with the heaviest fanny pack/cross body bag you’ve ever lugged. And, it can save your life if your wussy heart stops, so quit yer bitchin’. Basically if my heart decides to skip a bunch of beats or goes into major overdrive, it will shock me good and hard, and that will hopefully fix the rhythm. So…important vest, if not all that stylish. PS: You know what helps with making this thing comfortable, once you have it on? NOT having boobs. Ooops. Lucky Jasper. My doctor talked to me about it once we had it on and running. Hearing that I needed to wear this at all was upsetting. When I asked “how long?”, and heard, “Usually several months to a year, unless we decide that you need a defibrillator implanted permanently”? That was the sound of $%^& getting real…
My heart doesn’t work right. My HEART. This was not little adventure, not a chance to watch Netflix and recover from a stressful weekend. This is freakin’ SCARY. I have two little kids and a husband who need me to be around forever, and the hospital was not even letting me shower (ew), because they didn’t want me off the heart monitor for 10 minutes. Would this get better? Would this shorten my life?? It sure has heck won’t lengthen it… Fill in other horrible thoughts here. Dr. Serious was talking about this being the beginning of “a long journey together”. “Well, at least he gives me a ‘long’ journey with him!” I thought later. It hit me that right now and going forward, even though I felt ok much of the time, my heart is not able to supply my body with enough blood. Until it gets better (assuming it does), my heart is working overtime, all the time. Although it’s not immediately likely, it could decide it was done. Possibly while driving my kids somewhere. Or teaching. Or sleeping. Worse, it’s been this way for a while, we think, and I had no idea. And I almost bought cough drops and didn’t go to the doctor. PSA: Holy crap. Go to the doctor, people! On the other hand, I was walking, talking, breathing, and doing pretty good as long as I didn’t overdo it. And I was improving, right?
After I calmed down from all that, I started lamenting the less important things like (do not laugh) food and drink. Goodbye Taco Bell and Scotch, I thought. Goodbye going out for a drink with a friend. This thought was sad at the moment, but thankfully kind of wrong. At discharge I learned that as long as I keep the very low sodium diet and limit fluids to 32 oz. a day, it’s ‘everything in moderation’. I can have my precious coffee, though not as much. If I tolerate the lower blood pressure they’re keeping me at with meds, I can probably have a drink just fine. Fun at restaurants and parties is going to have to be more about the company I keep than the food and drink. (But…I love food and drink!) This is all totally doable. But Thursday night I was just getting hit with one harsh reality after another, and I was BUMMED. Hopefully going home the next day, I was wondering if life was going to be boring, paranoid, worrisome, or worse: shorter. The “shorter” idea took the rest of the laments and shut them right up, of course.
Late Thursday I texted my poor, tired husband and told him I was done pretending to be happy and brave and would like to change my status to freakin’ pissed off and terrified because again, WHAT. THE. HELL?!?!?!?!?! I slept off part of that shock (It comes back sometimes but mostly I’m good) and felt better in the morning when they said I was moving to a ‘regular’ hospital floor. I’d been on the step-down-from-ICU floor, until then. This was a good sign! I said goodbye to my awesome PCU (progressive care unit) nurses. I was unceremoniously discharged later on Friday and was home before the big girl’s school day ended. My favorite part of this was my children, my husband, my bed, and my arms not getting stuck by needles anymore.
What I find funny is the timing of all this. Our youngest was a cardiac kid. She had gotten over several issues during the week after her birth, and 5 years ago TODAY they finally went to do the last physical so they could discharge her. Then they heard her heart murmur. They let her go anyway, after a pediatric cardiologist checked her. We thought we’d never see that guy again. Instead we got to be good buddies with him as her heart condition worsened over 3+ months. She developed congestive heart failure (Awwww, like mother, like daughter!) because of a heart defect. Once they tackled it, she looked better right away. She didn’t have the exact same problem I do, but she did improve! She had fluid and all these other symptoms too, and today she’s fine. She’s more than fine – she’s running around, tearing apart my living room for a “pretty pet festival”. She was discharged from cardiology years ago. I want another like-mother-like-daughter moment here, please.
So, the whole “what’s going on with Meg” this week thing is both somewhat scary and not that big a deal. Writing it out has helped me figure that out, so thank you. I did not put a single link to any websites about dilated cardiomyopathy or other big words in this post, because looking at those has been as huge mistake. I have to tell myself that most people who have this problem are much older, and have other health problems too. The general prognosis given on some sites for my diagnosis is not very promising. But I am younger and stronger, as I keep reminding myself. This condition could shorten my life, but I am also going to live in a much healthier way from now on (waaaaah, fast food!) so it could even conceivably lengthen it, too. I will be honest and say that I was a wreckless sodium junky before all this happened. It is easier to stay motivated to take care of yourself when, if you don’t, your HEART WILL STOP WORKING RIGHT. As I understand it now, my heart function may get better, and it may not. But we’re doing what we have to to help it. I am also getting a second opinion at a heart institute hospital nearby, and seeing a specialist in congestive heart failure. I want to ask my cardiologist what this means for my life, in the long-term. I also want to never, ever, ever ask him that, and take it day by day.
I still feel tired, but way better. I wonder about every little tweak or twinge I feel in my body, since I’ve been home. Then I’m glad for the defibrillator vest. Sometimes I (blissfully) forget about all this crap, forget I have the damn box on, and crash it into something. Sleeping at home is awesome, by the way. I’m a huge fan. I still have the “CHF cough”, and if I walk around a while I get winded. I get annoyed by this, and then I remember that, duh, I do still have congestive heart failure, blah blah blah. I’m thrilled to be around my kids and hubby, after all this crap. My girls have unfortunately gotten whatever they wanted out of mommy this weekend, as long as I could do it from the couch. (I’m supposed to be resting.) I am grateful for my lovely coworkers, who have been, no doubt, helping and/or subbing for me in my absence from school. I’m grateful that I have people who love me, to talk to me in one way or another this week. I’m really grateful that I can drop off the grid, family-wise, and not worry an ounce because there is a line of people offering to care for my kids and help my husband with home and work.
So, this was my “chart” board on Friday:
I like this. What does “Special Needs: Self” mean? That’s deep…
I am scheduled to go back to teaching on Thursday. I can’t wait to explain my new accessories to my students. Is it bad to say, “Don’t make me mad. My vest thing could shock you…”? Wa ha ha.