Seventeen months.
That's how long my bovine pericardial tissue valve lasted before my third valve job. If you ask my cardiologist, he'd likely tell you that my tissue valve was failing within six months of implantation. In my body's honest opinion, my valve never truly "took." Hindsight, as they say, is always 20/20, and looking back, I never fully recovered from that second surgery in 2016, when my skilled surgeon removed my native valve and implanted Edie, my cow valve. My return to work as a crazy high school teacher was delayed by one semester. At week six post-op, I was still lounging in my PJs and taking long naps. Part of me said it was because I was 40 years old, ten years older than I was when I had my valve repair, so of course recovery would take longer. Part of me said it was because I'd been in heart failure in the months leading up to my surgery and that's hard to bounce back from. But while I was able to resume running after surgery (around month 4), I just could not seem to build my endurance. Surgery was in June, and my checkup with the surgeon to make sure the MAZE procedure I'd had along with the valve replacement had worked was in November. I remember telling my surgeon that I was running again, but at month 5, I was only going about a mile. Still, I was tired all the time. I even recall feeling short of breath in October as I walked around the local mall doing some light shopping. It alarmed me, but I told myself that my lungs were still healing. Now, I did feel fine when I returned to work in January 2017, and I threw myself into teaching. Despite a scare in March that landed me in the ER--my left arm had turned completely numb, but I was OK. Looking back, I think it was a sure sign of valve failure. When I had my one-year post-op echo after school was out, I figured everything was OK. Mike and I celebrated our 15-year wedding anniversary a few weeks later in Del Mar. The Monday after we returned, I saw Doc. (Rumor has it that he knew before Mike and I left that my valve looked bad but he didn't want to call me in earlier to inform me and ruin our trip). I burst into tears when I saw the echo report: Significant degeneration of bioprosthetic valve. What the four-letter-word??? Usually when things look bad with me, Doc freaks out. But he was calm. Maybe he didn't want to freak me out, but it was too late. He wanted to do a treadmill test. He was concerned when I told him walking uphill from the beach to our hotel room was murder, and I think that sounded alarm bells for him. I won't forget the look in his eyes when I told him that. I'll get into the details of my second valve surgery journey later, but in this post I want to address this issue of early bioprosthetic valve failure. I had the pleasure, opportunity, and honor recently as my first "gig" as a National Heart Valve Ambassador to speak at Edwards Lifesciences' Advocacy Day as I presented "How to Give an Elevator Speech." As I shared my story as succinctly as possible, I mentioned that I'd had two valve surgeries within two years' time, that I had a tissue valve and now a mechanical. I think I scared some of the attendees who have tissue valves themselves. I tried to convey that this is an extremely rare occurrence, and it is. Here's a link from the Journal of the American College of Cardiology (JACC) that explains as such. It's in doctor jargon, but still the idea is there: tissue valve failure is extremely rare. http://imaging.onlinejacc.org/content/8/6/737 Words such as rarity and infrequent classify super-early tissue valve failure, according to the article. It rarely happens. A mechanical valve can fail early. A valve repair can fail early. Sometimes, these things just happen. And if you're a heart valve patient who is reading this, please don't worry! At the same time, do take note of any strange changes in your stamina and energy after surgery. But moreover, while there are always risks, the benefits of a valve replacement, no matter the type of replacement valve, outweigh the risks. April 11, 2006
Twelve years ago last week. Let’s rewind to that day—the day that changed my life. My life has never been the same since the day that my heart valve defect took center stage. I can still picture myself in my classroom that day with my super-short pixie haircut, my black short-sleeve sweater and black knit pants with short black boots (boots are still my staple: easy to put on!) In the morning as I observed my students working on a group project and I sneaked away to the computer to work on creating a test, my principal came in to my room and asked for a ruler. He wanted to measure the newly-planted grass outside. Amused, I handed him one and chuckled as he went back outside, bent over, and nimbly measured the grass. Other than that, April 11, 2006 was turning out to be like any other school day. We had two more days of school before spring break, and I was anticipating the week off much as my students were. But don’t life-changing days always seem like that? Normal until... Lunch period came, and because I’d put on 15 pounds of the 50 I’d lost three years earlier, my lunch was a simple cup of grapes. (If only I knew then how much happier and healthier my body is 15 pounds heavier!) I munched on them as I helped out a few students with their research paper drafts. A couple young ladies were doing each others’ hair as they happily gossiped, and suddenly... The elephant sat on my chest. Almost by reflex, my right hand fluttered upwards to my heart. “Are you OK, Mrs. North?” asked my student. Not to alarm him, I said yes, but that we better cut our conference short. He gathered his papers and left, unaware as I was that there was anything wrong. I called my best friend at work. Her classroom was across campus and I told her I wasn’t feeling right. “Deb, you need to get to the ER,” she said. “No, no, no,” I quickly protested, “we have one period left! If I feel this way after school, if you want to go with me, that would be nice.” I thought that was it, but she “snitched” on me to the school secretary who promptly called 911. Almost immediately, I was surrounded by my principal who ordered me to lie on the floor, but not before I called my husband at work and left him a casual-sounding voicemail to the effect that I was OK but was going to be going to the hospital. My principal awkwardly joked with me as he had me elevate my feet on a chair that “This sure changes things between us,” and as other administrators came rushing in as one herded my sixth period students away from my room as they waved at me from the doorway (by this time, sixth period was starting), the paramedics came in to assess me. As I was loaded into the ambulance, I stated that I hoped it wasn’t my valve, but deep down, I knew it was. Despite the fact that my cardiologist had told me only a year earlier that I wouldn’t need surgery until robots do it (his precise words, actually), I knew. I knew. In the ER, a blustery doctor might as well have told me bluntly that I was a hypochondriac. “You just have mitral valve prolapse...do you always come to the ER when you’re having shortness of breath?” Sheesh. But I mumbled something about this was the first time it was this bad, that I normally don’t go to the ER, and then Mike arrived in record time. As soon as he’d heard my voicemail, he left work, raced to my school to find out what hospital I was taken to, and then jammed there. After a couple hours of tests and blood work, only to reveal that I was not having a heart attack, there was no clot anywhere, the ER doctor came back in to my room, a changed look on his face. “You need to go see your cardiologist as soon as you can,” he advised me. “Your cardiologist says you have myxomatous mitral valve prolapse.” At the time, I didn’t know what that meant. I’d only been a casual participant in my heart life, and I knew I had a degenerative valve, but I didn’t know the terminology. I knew I'd need a valve replacement someday--in my 60s--but I was five months away from my 31st birthday. It's not time now, is it? When I was discharged, Mike and I went to Panda Express for dinner. I remember feeling so stupid. Nothing was wrong with me and I felt that I’d wasted everyone’s time. Despite the fact that the ER doctor urged me to see my cardiologist right away, I was sure even he’d tell me that everything was OK and I’d go back to work after spring break and continue life as normal. Little did I know, even as I sat in awkwardness with my husband as we ate orange chicken and fried rice, that this was the first day of my changed life. I took a screenshot of the definition of buffet on Dictionary.com for your viewing pleasure. People have been asking me, "Heart valve buffet? What does that mean?"
1. I took one of each, so to speak: a repair, a tissue replacement, and a mechanical replacement. 2. I have been buffeted by the stress of being a heart valve patient. 3. And...I'm an English teacher. There you go. Word play. OK, so it's been a few days since I've posted. But as I discussed in my previous post, I'm allowing myself to be tired.
Oh, I think, I should write my blog. I should go do some laundry. I should be getting this done and that done. Hold up, lady! Go sit down! Cardiac rehab is busting my booty. Not only have medication additions, changes, adjustments (and paying increases in medications I've been taking because my health insurance decided to increase my co-pay on them, yay) affected how I feel--some make me yes, tired; others have side effects I'd rather not get into right now--I've been trying to listen to my body and to the Lord and just be. Sit. Watch that other episode on the DVR. But yes, I am feeling the rehab! I am getting stronger--I'm able to lift 5 pound weights in each hand when two months ago I was starting at 2 pound weights--but the more (slowly, of course) that the nurses are allowing me to ratchet up the exercise, the more tired I am the next day. My heart is reminding me that it's been through a lot. Slow and steady wins the race! Hubby says there's a disconnect between my brain and my body. I think I can. My body is like, nope, no way! But about the CHD, though. This. http://people.com/movies/arnold-schwarzenegger-first-words-after-heart-surgery-im-back/ Politics aside, whether any of you Californians liked him as the "Governator" back in the day, Arnold Schwarzenegger has CHD. The fact that the news outlets in my area actually used the term congenital heart defect is impressive! I was actually at cardiac rehab last Friday when one of my best friends texted me: "Hear the news about Arnold Schwarzenegger? Went in for another valve replacement. They replaced the valve he did in 97. The surgery failed! They had to rush him back into the OR and replace it again! I prayed so hard the night they took you back into the OR. I was so relieved to hear yours was not as bad as this one! It was weird. I had that spidey sense that something might be wrong and that is why I stayed and told Mike to get rest. So glad you are alive and recovering. I can't live without my sister!" All I could think was, Wow. I hadn't heard the news until my friend told me, and once I got home, I browsed Facebook for the news. Many of my heart friends had posted about it, of course, and I read the comments to the links to the articles they shared. Other than feeling heated about ignorant comments regarding Schwarzenegger's surgery, the fact that there seemed to be an open dialogue between people about CHD was impressive. Not many people understand or recognize CHD--and there were several uneducated comments that stated if Schwarzenegger had taken better care of himself, he wouldn't have heart problems--but the fact that it was out there made me feel good. Not that he had to have surgery--I wouldn't wish heart surgery on anyone--but the fact that there was a conversation out there, even for a brief minute, was nice to see. Still, Schwarzenegger's surgery put things in perspective for me. And I hope for anyone else who read the articles online, or heard the news, with an open mind. Heart valve surgery--even when minimally invasive--can still be risky. Complications can happen. It did for me as a 42-year-old. It did for him as a 70-year-old. It can for a year-old baby, or a 13-year-old. It can for anyone. Also, CHD presents itself in different ways. Some people are diagnosed at birth (like I was) and have surgery as babies. Some, like me, won't need surgery until adulthood. Others may never need surgery. And yet, there are those who will need surgery later in life. At the same time, valves can become diseased, not related to a congenital defect, and need repair or replacement. We need to bridge that gap. Anyway, today is a good day. I'm trying to reflect on healing Bible verses at my therapist's behest, so I'll close out with this one from Isaiah. By the way, when I was in the hospital feeling a little fearful post-op, this verse popped up on my Bible app and comforted me: "So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand." ~ Isaiah 41:10 (link to a great site for Bible verses). Yesterday, March 28, was my four-month newest valversary. This has been my toughest recovery so far. I’ve been struggling with building my stamina, my endurance, and trying to get back into the rhythm of life now that I have a new mechanical valve that ticks along with every beat of my heart like a timepiece.
If you know me well, you know that I’m incredibly hard on myself. I don’t like feeling sorry for myself though I’ve been prone to it this time.I'm usually the one who "puts on her big-girl panties and deals with it." I've been frustrated that I’m not bouncing back as quickly as I should or expect to. Frustrated that I fell ill a couple weeks ago when I had important places to be and things to do! Most importantly, I haven’t given myself permission to be tired. A couple nights ago on Twitter I read a comment in which a young man told of his experience in which he replied to a person who questioned his use of a disabled placard. This young man lowered his shirt to reveal his OHS scar and said, “When you’ve fought the battle I have, you’re allowed to be tired.” I’ve been thinking about that. I’ve fought--been fighting-- this battle for almost 12 years. I’ve had four surgeries, counting the second surgery to address the complication the night of my valve replacement four months ago. I’ve been going to a wonderful Christian counselor for the last few weeks as I’ve been battling oppressive post-op depression (More on that later, too). Last week she commented, “You never recovered from the last surgery you had! Of course you’re tired!” I have not been giving myself permission to be tired. I saw my cardiologist yesterday morning and shared how I’ve been feeling. The same thing from him: “You put too much pressure on yourself,” he said. He then told me, “Four heart surgeries is incredibly hard on your body. You’re still recovering and it’s going to take some time.” It’s going to take some time. Hard for this impatient-I-want-it-now girl. Be still, I hear the Lord say, loud and clear. Go lay down. (I think of my sister-in-law saying this to their family dog when he gets hyperactive). And then I think of this Bible passage from Exodus 14:14: “The LORD will fight for you; you need only to be still.” Isn’t this true? The Lord is healing me from the inside out, much like my wounds closing from the outside in. I need only to be still, to rest, to heal. Our bodies need rest to heal. That’s why we don’t see people running marathons with the flu. OK, maybe some people do that, but most don’t. I’ve been running my own “marathon,” so to speak. Trying to accelerate my healing and meeting “prescribed” benchmarks. The paperwork from my surgeon says I should be back to normal within 6-8 weeks. When I was planning to return to work after surgery, I believed giving myself an extra handful of weeks would ensure full recovery. But it hasn't. I'm still recovering. Even if you search “How long does it take to recover from heart valve surgery?” through Google, the top result from the American Heart Association says just that: 6-8 weeks. But I’m at Week 16 and I’m not fully recovered. My body has been through an amazing ordeal. That’s what my surgeon’s nurse said to me after my surgery in 2016: “Don’t try to rush your healing,” she said, “your body has been through a tremendous amount of trauma.” Easier said than done, I thought. Yup, I tried rushing that one, too. And while my own particular CHD and associated issues don’t fit into some neat little heart box, neither does the timeline of my healing. It’s OK for me to be tired. It's OK for me to be struggling still. I'm fighting an extraordinary battle. Isaiah 26:3 Before I share my current story, allow me to share with you how I got to where I am today in March 2018.
*** I'm the youngest of three and the only girl, and if you're wondering if I'm going to unload my autobiography in this post, no, I'm not. Just the details that are relevant. My mother had me later in her life; at 37, she was in a "geriatric pregnancy" with me. My brothers were teenagers. Still, anyone can speculate all day whether her age had anything to do with my heart defect since I'm the only one in my family with CHD. (It likely didn't). During my birth, I had a heart attack that caused a stroke. I was rushed to Miller Children's Hospital in Long Beach, CA, where I spent the next 13 days in the NICU fighting for my life. Really, I wasn't expected to survive. But during that time, my pediatric cardiologist discovered that I had mitral valve prolapse, or MVP. For many, MVP is benign. For me, it meant an inevitable valve replacement in my 60s. (More than likely, according not only to my pediatric cardio but also to my adult cardios). And that was that. Despite having a weak right side from the stroke, I was an active adolescent when I ran track. And, it was at 16 when I first realized how my valve defect limited my life. My pediatric cardio pulled me off the track team during my second season because the stress of running, he said, was making my valve worse. He didn't want to have to put a new valve into a healthy teenager like me, he told me. I cried myself to sleep last night. I absolutely loved running (more on that later). For the next 15 or so years, I lived with CHD in the background. Yes, I nearly died from complications at birth. No, we won't need to do anything about my defective valve until I retire. And other than swallowing a bitter dose of amoxicillin an hour before getting my teeth cleaned twice a year, I rarely thought about being a Heart Patient. But then came April 2006. Ah, April, the cruelest month (regards to T.S. Eliot). My valve was failing. I needed surgery. I had a valve repair. I thought that was it. I'd go back to yearly or twice-yearly checkups with my cardiologist. It wasn't. After a wild variety of what I call cardiac "misadventures," buffeted by the wild winds of life after heart valve surgery, I needed a valve replacement in 2016. Ten years short of my tenth "valversary," I had my native valve replaced with a tissue valve. I thought that was it. It wasn't. I needed another valve replacement last November. This time we did a mechanical valve. I'd like to say that my life has returned to normal by now. It hasn't. There isn't "normal" anymore. No one can say that recovering from valve surgery is a smooth trajectory. It isn't. Every body is different. I had a complication the night of surgery that put me back in the operating room. (More on that later, too). I never truly recovered from my second surgery in 2016 when I had my third. So I'm going to be honest in my blog. I'm not going to sugar-coat and put cherries on top of anything, because life is not an ice cream sundae. Life is the sting of cold on your sensitive teeth when you take your first bite of said sundae. Most of all, I'm going to be sharing how Jesus is carrying me through this. How He carried me through this. I should have died 43 years ago, but I'm here to share my story and God's grace through each step. |