It still feels like this happened yesterday. The column I wrote in college years ago, “Just One Season,” was inspired by this event.
My high school track career was cut short my junior year of high school. It was the evening of Friday, March 6, 1992. I was upstairs in my room. I miss that room, by the way: The peach curtains, the peach-and-mint green color scheme, the peach eyelet comforter that covered my cream-and-brass daybed…everything was so eighties/early nineties, and I loved it. And having my own bathroom? The best! I could grab my peach-colored phone, drag the long cord into the dressing room, slide the door closed, lean against the linen closet door, and have almost-private conversations with my best friend Kelly, and my other best friend, Kelly the Guy. Those were special days. But anyway, I recall just chilling in my room. I was likely either watching TV on my 16-inch white Sony TV which I’d received as a sixteenth birthday present six months earlier, or I was reading the latest edition of ‘TEEN magazine. I was a shy, awkward teenager with a mouthful of braces, and Kelly and I had just started to get to know each other. We'd actually met while I was on the "DL" from track practice as I hung out near the water fountain across from the gym. Kelly was an office aide, and we'd chat while she was on her route. Still, I was that kid who didn’t ever go to parties or on dates. I was that kid who stayed home in her room all weekend, doing homework, writing a story in a spiral-bound notebook, reading a book, talking to a friend on the phone, or watching TV. The phone rang, and my mom had already picked up the line downstairs. “Mmm…lo” was the way my mom said hello, and I heard Dr. W, my pediatric cardiologist's distinctive Texas drawl on the other end. I quickly put the phone on mute so my mom wouldn’t know I was listening. I heard everything. Dr. W had read my echo and reviewed my treadmill test results. I was hoping he’d sign my athletic clearance form to continue running track. A few weeks earlier, I had sprained my ankle at practice and I couldn’t run for a couple weeks until my ankle healed. When I was able to resume running, my tolerance changed. I had a hard time recovering from our practice running drills when Coach would start off really loud and then mumble, “OK, GUYS, I WANT YOU TO SPRINT AROUND THE CORNERS and then jog nice and easy down the length of the track…” Before my injury, I could recover quickly in a minute or two, but now I was huffing and puffing for about five minutes. Even though I was sixteen years old, I chalked up my shortness of breath to being out of shape. Then, I had my echo and treadmill test, a stress echo. A couple years earlier when Dr. W had given me his blessing to start running track, I blew past the twelve-minute requirement/expectation and ran for twenty minutes. I impressed myself as well as the nurses who were monitoring my progress as I ran. But a couple weeks before this call, I grew tired at seven minutes and asked the nurse to stop the test. I was expected to run for twelve minutes, but I just couldn’t. I thought nothing of it; I assumed that my ankle injury had affected my tolerance and it was going to take some time to build my exercise tolerance again. Dr. W spoke: “I don’t want Debbie running track anymore. It’s making her valve worse.” His words hit me like a UPS truck. Not the delivery truck, I mean the BIG truck that takes all the packages to the distribution center. Thank goodness I was still on mute because I burst into sobbing, gulping tears. I might as well have had a boyfriend call me to tell me he wanted to break up. That’s exactly how I felt. Granted, I was not a talented runner. I always came in dead last at track meets. But I loved running. I loved the freedom I felt, the “runner’s high.” It was one thing I could do that made me feel normal, not like the weirdo kid with a weak right side and speech impediment. Learning that I couldn’t do this anymore was more than a slap in the face. I grabbed one of the decorative peach eyelet pillows—the heart-shaped one—and I cried myself to sleep. Thirty years ago tonight, I learned for the first time that my life was limited by my valve defect. It would take another fourteen years for the full impact to take fruition, and if you had told me on that March night thirty years ago that in another thirty years exactly to the month that I would be having my fourth heart valve replacement, I’d likely believe you, because the reality of the situation was fresh and new and realized. My mom had saved my athletic clearance forms along with a bunch of other random heart tests and even my oral surgery documents from my teen years. Recently, I went through the file again, and in Dr. W’s loopy handwriting in blue ink he wrote: “Restricted from competitive and non-competitive full exertion running.” Dated March 9, 1992, with the additional information that I have congenital mitral regurgitation, I was five feet six and a quarter (I'm now close to 5'8", so I did grow another inch after that), and I weighed 127 pounds! (Yeah, I’m never going to be 127 pounds again. I’ll be happy staying around 145-150 pounds). The following week when I saw my cardiologist for my follow-up, I challenged him. I still remember this conversation as much as I will always remember the fact that Dr. W had red hair and always wore cowboy boots with his scrubs (well, he was a Texan!). But his matter-of-fact demeanor, warm personality, and caring bedside manner are qualities that I see and appreciate in Doc V (even though Doc can be grumpy as heck, even as recently as when we did my TEE and he was ticked off that we had to do it. Obviously, we all know how that turned out!). And similar to Doc (thirteen years before my conversation with Doc), he challenged me back. This is how I recall our conversation: Dr. W: “Debbie, I don’t want you to run track anymore. It’s making your valve worse.” Me: “Please let me run, Dr. W! I love running, you have no idea!” (typical teenager, trying to cajole an adult to get her way, dangit!) Dr. W, clearly annoyed: “Debbie, do you want a valve replacement?” Me, probably shaking my head no. Dr. W: “I’m not going to put a new valve in a healthy sixteen year old.” Me, realizing the gravity of the situation: “OK.” In 2005: Me, calling Dr. V on the phone at his office a few weeks before my 30th birthday: “Dr. V, can I get a tattoo for my birthday?” Even though at this point in my life, valve surgery was not quite a possibility in my life at the time, I knew to ask for permission to get a tattoo because of needles going deep into my skin. Dr. V: “What do you want to do something stupid like that for?” (Seriously, these were his exact words!) Me, rambling, trying to justify: “ Um, I’m turning thirty soon, and I wanted to get a small one on my ankle…” Dr. V: “I can load you up with antibiotics first, but you’re putting yourself at risk of endocarditis. Do you want to take a bunch of antibiotics?” Me: “No thanks.” Dr. V: “I don’t want to put a new valve in a healthy young lady like you.” Yup, Doc went to the school of “Threaten Deb with a Valve Replacement and She Will Relent.” Well, seven months later and my valve was failing (I’m glad we didn’t expedite the situation by a 30th birthday tattoo…). Anyway, here I am on March 6, 2022, starting to write my memoir and of course mulling over my mortality because in seventeen days I will be having valve job number four. And I’m having a lot of regrets, because I think about what if I don’t survive. I wish I’d gotten back into running. I wish I hadn’t wasted so much time. I wish I had spent more time with friends. I wish I’d started my memoir earlier. Aside from this blog, I just started writing my memoir a couple weeks ago, and I gotta tell you, I've been feeling so many emotions as I've been recalling and writing about the events as they unfolded in my valve journey. I can’t change these things, and if I don’t survive this next valve surgery, none of these regrets will matter anymore. Even attending a virtual conference with the Adult Congenital Heart Association (ACHA) yesterday, two pediatric cardiologists were talking about risks of surgery with subsequent surgeries, and although there are risks, many can be mitigated now, thanks to advancements in medical technology. Still, if I don’t survive surgery, I want to be in Heaven with Jesus. If I do die during this surgery, I’m going to be all, “YAY JESUS!!!” when I see Him. For reals. ♥ As Chris August sings, Jesus is in the center of it all. He knows what's up. And this is where I am.
Jesus rose Lazarus from the dead...but Lazarus eventually died. Jesus healed the woman who had been bleeding for a dozen years...she eventually died. Jesus healed the lame man...he eventually died, too. What I'm saying is that Jesus can work miracles in our lives, but because we are mortal creatures, we will eventually pass away. I've watched enough real-life crime shows to know that some people who have met their demise at the hands of another were miracles themselves. Surviving family members have expressed that their loved one had survived a childhood illness or anything else, and my brain goes to how awful it is that a person had their life taken away from them after surviving childhood leukemia, for example. Things like that. And it gets me thinking about the fragility of life, that we can be someone's miracle baby, but our lives can end in an instant. We are not special just because we survived a heart attack at birth, or cancer, or a car accident at three years old. Everyone dies. You may be wondering why I'm writing about this today after having not published a blog post in over six months. Because my mortality is on my mind again. The valve that by God's hand and the miracle of Lovenox unstuck last year just in time for my surgery to be aborted in the OR is sticking again. Or it's stuck. Allow me to tell the tale in the Reader's Digest version: I'd honestly thought Judy the Valve would last me the rest of my life, truly. I even bought a truckload of Elly & Grace Christian t-shirts to remind me of God's grace. Shirts like, "He is the God of Miracles," "Not Today, Satan," and "And If Not, He is Still Good." I even messed up my "Thankful, Grateful, & Blessed" t-shirt last year when my palate hematoma exploded open. All summer, even as I struggled mentally and spiritually with the experience of getting thisclose to surgery, I threw myself into planning for the future: Going back to teaching in person, even with COVID protocols in place. And before I knew it, it was August. One day, a couple weeks before school started, I found myself short of breath all day. Shopping at the grocery store, cleaning and tidying the house, sitting on the couch. And then, in the early evening as Mike was outside watering our newly-planted garden out front, my heart went into the strangest rhythm. THUMP-THUMP-THUMPPITTY-THUMP. And then I could breathe freely, as if I'd just been given a nebulizer treatment. Strange. I messaged my cardiologist's nurse through the patient portal even though it was a Saturday, and on Monday she called me to tell me to report for an echo on Friday. That echo showed my valve was working just fine, and a week later, I was back at work. Still, I couldn't shake these digestive issues I started having after my COVID booster. Crushing heartburn and pain in the upper right quadrant. Fear gripped me: What if this is pancreatic cancer? I was only three years younger than my daddy was at the time of his diagnosis, but I still tried to explain away the symptoms. I was stressed, tired, middle-aged, I just needed a Tums. Mike convinced me to go to our GP, and she ordered an abdominal ultrasound. It was gallstones, not cancer. This happens to women who are over 40 and have had dieted, apparently. I checked those boxes. 46. Check. I was on Weight Watchers in 2003 and 2009 and lost 50 and 35 pounds, respectively. Check. Long story short, my last day working was the Friday before Thanksgiving, and I had surgery to remove my gallbladder a couple weeks later. A complication with the incision ensued a few days post-op, and my healing was stunted for a few weeks. But Doc, in his usual fashion, decided "what the heck?" and ordered an echo while I stayed in the hospital overnight recovering from the gallbladder surgery. He lost his stuffing at the fact that the mean gradient was 7.8 (indicating valvular stenosis, or narrowing), and shortly before he discharged me, he came into my room all a-bluster as he thrust his knees against the foot of my hospital bed and started rattling off: "Debra, I don't like the way your valve looks...your mean gradient is high...I want to send you back to the surgeon." Mike and I exchanged glances. "Doc, can't you just let me heal from this surgery before you start talking about another one?" I asked. Doc chuckled but was insistent that we do one more echo in mid-January just to make absolute sure. That echo revealed that my mean gradient was now 3.5; we'd both assumed, Doc and I, that my valve was "misbehaving" in December after the gallbladder surgery because I'd had to stop Coumadin for a while and my blood was sludge. Of course my valve would have to work harder. But everything was fine! My valve was as good as could be! I'd pass my TEE just to make absolute sure, and I'd go back to work February 1, now that my incision complication had resolved. I started buying school supplies, eager to get back to normal, as our dining room turned into a veritable Amazon distribution center. I'd even told the secretary at HR that I was getting stir-crazy, and I couldn't wait to go back to work. She'd called to make sure I was indeed returning on the 1st. But then God intervened. One week before my slated return, on a beautiful Sunday afternoon, Mike and I decided to order new curtains, and I was short of breath. So much so that Mike threatened to take my sorry butt to the ER. I appeased him by telling him I'd message Doc's nurse, which I did. I'd assumed that my symptoms were heart-rhythm related, and I decided that I needed to get back to my electrophysiologist. We did the TEE on Thursday, and my valve was stuck. The summary report states: Mechanical bileaflet MV prosthesis with pannus formation and stuck leaflet in the closed position. I was not to return to work. Well, there you go. A trip back to the surgeon who stressed the importance of "let's get this done ASAP" with a March surgery date and the understanding that there will be no more aborted surgeries. This valve will be replaced, the scar tissue will be cleaned out, and you (Deb) are in a precarious position because you have only one working leaflet. I'm grateful that I've already developed an easy rapport with my surgeon. Although the consultation was mostly business, we still joked and laughed: "I guess we need to finish that knife fight we started," I said, and my surgeon laughed. But again, I've been chewing on the prospect of surgery again: This was almost two weeks ago. So here I am again, pondering my life. Thinking again of the what-ifs. What if God had intervened in last year's surgery as a sort of stay of execution? And if so, why did He give me only one more year? What if I don't survive surgery? What if I do? What if surgery goes sideways and I can no longer work? What if...what if...what if. Mike reminds me that though he's worried, just as he's worried with the other three surgeries, he knows that the surgery will go one of two ways: Either I will survive and move on in life with a fresh valve and whatever comes with that, or I will be in Heaven with my family and hopefully my pets who have gone before me. And last year, I remember the peace that washed over me in the shower a few weeks before the surgery: You're not going to need surgery; and the peace that washed over me again after the palate bleed when I was scared of endocarditis: You're going to be OK. (Side note: Why does the Lord always talk to me in the bathroom? For reals.) The Lord was reassuring me then. Still, despite my fears, I ponder the fact that had I not had that episode of shortness of breath, I might have gone back to work and something might have happened. Why did God intervene, if not to carry me through surgery again? And if not, He is still good. Miracles don't last forever. Subsequent surgeries happen. Valves clog with scar tissue, and some people need another valve surgery. There is a reason why many heart valve patients choose tissue valves over mechanical valves when given a choice: Because Coumadin. Coumadin (generic: warfarin) is an anticoagulant which helps prevent clots from forming; this is especially important for those who have mechanical valves. Blood likes to settle on these metal parts and can cause clots, which can in turn cause leaflets to stick open, or can cause heart attacks and/or strokes. Therefore, any patients who receives a mechanical heart valve will need to be on an anticoagulant for as long as they have the valve. I've been on Coumadin since 2011, but because initially I was prescribed Coumadin for paryoxsmal A-Fib which is an intermittent heart rhythm disorder, bridging was never a concern. To clarify bridging, anticoagulants, and paryoxsmal A-Fib, check out the links below: Bridging Anticoagulation (from our friends at the American Heart Association): https://www.ahajournals.org/doi/10.1161/CIRCULATIONAHA.111.084517 Paryoxsmal Atrial Fibrillation (from the Mayo Clinic): https://www.mayoclinic.org/diseases-conditions/atrial-fibrillation/symptoms-causes/syc-20350624 As you know, I have a mechanical valve now, and I have had to bridge for procedures over the past three-and-a-half years. As a teenager, I had braces for several years, and as a result, now as a middle-aged adult, I have been dealing with gum tissue recession. I have had four gum grafts since 2013 on various teeth; the most recent was just a couple weeks ago. Basically, a gum grafting process involves the periodontist cutting away tissue from the patient's palate and then sewing the fresh tissue over the tooth that has the receding gum line. Recovery is not pleasant; it often involves a "stent"--a retainer-like device that puts pressure on the palate to help stem any residual bleeding (of course, the palate is stitched closed), and the patient can eat only soft foods for about two weeks, as the patient is super-careful about chewing on the opposite side of the mouth away from the surgical area. It's not easy being a heart patient, but even more so, it's not easy being a heart patient and a dental patient at the same time. You may know that people who have congenital heart defects, artificial valves, leaky native valves, and other heart problems are susceptible to bacterial endocarditis, an infection of the lining of the heart and/or heart valves. I'll let my friends at the AHA explain it to you via this link here: https://www.heart.org/en/health-topics/heart-valve-problems-and-disease/heart-valve-problems-and-causes/heart-valves-and-infective-endocarditis This is why, ever since I started going to the dentist as a kid for cleanings, I had to swallow a bitter dose of penicillin a hour before getting my teeth cleaned. Having a surgical palate expansion when I was fourteen years old meant a whole week of penicillin after the surgery. I even remember joking a few years ago with the pharmacist as I picked up my dental-cleaning-antibiotic, "Heh, small price to pay for preventing an infection in my valve." The antibiotics cost a whopping forty-five cents (with insurance). This time around, as I was preparing for gum graft number four, my dear husband injected me with Lovenox (enoxaparin; see link above regarding bridging) for a few days before the oral surgery. He continued injecting me for a few days after. Then, last Tuesday, as I was preparing to go to the Coumadin Clinic (CC in future references) to get my INR checked, and hoping that my INR was back in range, Niagara Falls hit me. Mike and I had our landscapers here to do some work in our backyard as we prepare to plant all new foliage and flowers. I was about to go outside and check on the guys and let them know I would be heading out shortly to go to the CC. I texted a friend with a reply to her text as I sat on the couch, and when I got up, I could feel a hot rush--a hot gush--of blood in my mouth coming from the graft excision area in my palate. I grabbed a handful of Kleenex from the end table and ran to the bathroom where I spit out a crapload of blood. Remembering what my periodontist had told me about bleeding, I had kept a black tea bag in a cup in our bathroom, so I grabbed that, applied pressure to my palate, and struggled to get outside to our landscapers to summon help. One guy looked at me, alarmed, as I mumbled out, "Call 9-1-1," and he sprang into action. Within ten minutes, two teams of firemen arrived as well as the paramedics. By this time, I'd grabbed a hand towel from our linen closet to try to help catch the blood that was steadily pouring out of my mouth. My left hand was valiantly applying pressure to my palate with the now-blood soaked tea bag, and my right hand was holding the towel to my mouth. I was dizzy and lightheaded, and I was scared. As the paramedics loaded me into the ambulance, I remember clearly thinking, So this is how I'm going to die. From blood loss from a freaking dental procedure. Ironic, if you will. Before not-surgery I was convinced I was going to die from complications from another valve replacement. When I survived that, I held tightly to God's promises--Jeremiah 29:11. For I know the plans You have for me, Lord, plans to prosper me and not to harm me, plans to give me hope and a future. I recited that verse, speaking God's power over my life, as I rode in the ambulance, too afraid to move my fingers even a millimeter for fear that I'd lose more blood than I already was. Now, I'm going to go on a bit of a tangent here, so bear with me. I was taken to the emergency department at a local hospital where my cardiologist has privileges. I already knew that Mike was on his way, so I didn't think that I'd have to worry about him worrying about me (too much). As I sat in the ED (department, not room, because the emergency area is not a room, I remember us discussing at a meeting--I'm on the Patient and Family Advisory Council at a hospital in my area), a young nursing assistant came to me and said I had a visitor. Mind you, it was quite difficult for me to speak since I practically had my entire left hand in my mouth, but I was able to acknowledge that my husband was said visitor. A nurse asked me if I was fully vaccinated (more than two weeks after the second shot) for COVID, and I said yes. I'm sure she wanted to know, especially since I was obviously unmasked and unable to wear one. Now here's the tangent: My hospital experience was awful. Yes, I understand that EDs are overwhelmed, especially with COVID patients, and also especially for a large metropolitan hospital like the one I was taken to, but I was put in a wheelchair, rolled over to the triage area, and left to bleed. I tried to communicate with the hospital staff that I needed Mike to advocate for me and speak on my behalf, but no one seemed to make an effort to find him. I tried to tell one nursing assistant that my husband was there waiting for me, but she said he wasn't. No, he's not going to be in the waiting room with all the sick people. Go. Find. My. Husband! This happened several times. I tried to communicate that I have a mechanical heart valve, I'm on Coumadin, and up until that morning I had been bridging with Lovenox. I even attempted to show one nurse the bruises on my belly from the injections. Still, nurses would come by and just give me more gauze, fresh towels, and that was it. Meanwhile, blood was running down my left arm. My t-shirt was getting soaked with blood mixed with saliva. Finally, one nurse took pity on me and cleaned my hand and arm as best as she could with some wet wipes. I must have sat in the triage area for about two hours before the nurse assigned to me--a sweet young lady like the one who had cleaned my arm and hand--gave me a specially-made-at-the-hospital pharmacy topical anticoagulant which she squirted onto some gauze and handed me. I was so afraid to remove the gauze already in my mouth, but I quickly pulled away the old blood-soaked gauze, felt a fresh rush of blood again, and slammed the medicated gauze to my palate. Soon, I could see that my blood was clotting as it rolled out of my mouth, and I kept that gauze firmly pressed to my palate for about another hour. Mike was still not at my side, but I wasn't too worried. Having had been my caregiver since we started this Crazy Cardiac (Mis)Adventure fifteen years ago, I knew he would raise hell if he had to. Another nursing assistant finally wheeled me to a private room not far from the triage area, and I sat and bled for what seemed like another hour. I was about to get up and find out what the holdup was when I saw the young nursing assistant who had first met me escort Mike into the room. Mike was pissed. Not at me, but at the whole situation. He called Doc to let him know that I had just been thrown into a room to bleed and that I had been bleeding for hours with little intervention or acknowledgment. That's when the physician's assistant and an ED doctor came in, so Mike quickly ended the conversation with Doc as he told me that Doc wanted the ED doctor to check my INR (that didn't happen). The PA had me remove the medicated gauze, and there was barely a dribble of blood now. The ED doctor had me lie on the bed so he could examine my palate with his flashlight, and he cleared me to go home. In short order, I was sent home with instructions to return to the ED promptly if the bleeding resumed, which, the doctor warned me, could. As soon as I got home, I took my thirteenth dose of doxycycline which my cardiologist had prescribed a seven-day (twice a day) dose. I was to finish the last pill the next morning. I also called Doc through his exchange and nervously anticipated a return phone call. He called back, and I could hear restaurant noise in the background. Because I'd been eating mainly mashed potatoes, Spaghetti-Os, and vanilla Greek yogurt, I was hungry and all I could think about with envy was that Doc was probably out for Taco Tuesday, and was he having fish tacos and a strawberry margarita? In normal circumstances, I wouldn't have given another thought to the background noise, but I wanted real food. Doc was upset that the ED did not do any bloodwork nor check my INR. Because I also home test in conjunction with going to the CC, I used my last testing strip to check my INR. The machine spit out an error code. No INR reading. My body was rebelling: Look, we have been bleeding all day. ENOUGH. I also called my periodontist, and he was shocked to hear about my major bleeding event. He wanted me to come by his office the next day so he could examine my palate. The next day, Mike took the day off from work to drive me to the CC for my INR check. It was 2.9: low for me (now), but still in an acceptable range. I forgot to mention that Doc had told me to stop the Lovenox injections, which I did. Mike and I grabbed Jamba Juice after the CC, which tasted refreshing, though I can't use a straw right now, so I scooped up the thick Orange Dream Machine deliciousness with a spoon. It wasn't a strawberry margarita, but it hit the spot anyway. We then headed to my periodontist's office, and he took a look. He was glad to see that a clot had formed in the hole where he had pulled the gum tissue, but he was concerned that I was red and swollen in the surrounding area. Simply put: I likely had a hematoma that developed, bulged, and burst open. My doctor gave me further instructions: Stop using the stent. Rinse with warm salt water after every meal and Peridex (which I had been using since day three post-procedure) morning and night. Keep eating soft foods until the week of July 19 when he sees me for what would be my third post-procedure check-up. I see him on Thursday this week. Watch out for worsening pain, fever, or any other signs of infection. Watch out for bleeding again for the next 72 hours. I looked at my palate with my cell phone flashlight on Saturday morning, and the swelling was gone and my palate was back to a soft pink. Even now as I type this post, I can feel with my tongue that my palate hole is closing. Now, I have to be cautious of bleeding after surgeries, particularly after oral surgeries since the mouth is such a vascular area. Mike even tells the story of when he had his wisdom teeth removed when he was a teenager, and how he kept a Mason jar with him so he could spit out blood periodically. He said this went on for a week. I saw Doc on Friday, mainly because I had my if-I-pass-this-echo-then-I-can-go-back-to-work-echo, but also because he wanted to follow up with me after the hospital trip. He reiterated that he was pissed that the ED didn't do any bloodwork, not even to check my INR quickly to see how high it was (honestly, my periodontist was pissed about the same thing, too). We talked about bacterial endocarditis (seriously, that is my biggest fear!) and that he wasn't too concerned that my oral bleed would cause IBE since I was still on antibiotics at the time. I mean, Doc and I have discussed IBE at various points in our doctor-patient relationship of over twenty years, and he has always warned me about "odd fevers." I told him that I usually don't develop a fever when I have an infection, unless it's the flu, and that I didn't even have a fever when I had C. diff eight years ago, but he said I'd definitely get a fever with IBE. With that being said, my attitude right now is "If it happens, it happens. Not much I can do about it." A year ago I would have freaked out over having to to to the ED because of COVID. This past week when I had the bleed, I knew not going to the ED was not an option. I remember freaking out fifteen years ago the first times my gums bled after my first valve surgery; I was convinced that I would end up with endocarditis. I worried for weeks. Now, isn't much I can do. Either the bleed allowed bacteria into my bloodstream and it is causing IBE as I type, or I don't and won't get IBE. As I move forward in this latest chapter of my valve journey, this is what I know. Advocate for yourself, especially when you are in an emergency. Get help. Make sure your loved ones can advocate for you if you are unable to do so yourself. Don't be afraid to let the proper people know if you have had a poor hospital experience. This is why many hospitals have a Patient and Family Advisory Council or some variation, so that patients can have better experiences. Patients and family members on the boards provide input for improvement in all aspects of patient care. Nobody wants to have to go to the hospital. I know that I'm a severe bleed risk now, despite doing everything right in bridging both pre- and post-procedure. I will ask my periodontist about a coagulating mouth wash as well as in the future, using donor tissue for grafting. (Side note: If you are able to, be an organ and tissue donor). I know what to look out for if my valve does become infected. Just as in this COVID-infected world, most of us know what to look out for if we develop symptoms of the virus, we heart patients are accustomed to being aware of the warning signs of IBE. Lastly, I'm bloody Thankful, Grateful, and Blessed. That was the shirt I was wearing the day I bled. It has been 41 days since April 29, the day I was to have my fourth heart valve surgery. I have spent the better part of the past month recovering and resting as my body adjusts to the trauma and to new medications. Simply put, surgery did not happen. As hubby and I call it, I had "not surgery." The only reminder of this whole experience now is an emerging scar on my chest--an incision--from when my surgeon was preparing to do the surgery and closed me up. Apologetic, my surgeon felt really bad about cutting me (he said it was part of the procedure since I was all prepped and ready to go when surgery was canceled), but you know what? That scar is just a reminder for me: A reminder to keep moving forward with ThanksLIVING and to be reminded of the surgery that wasn't. I have been private journaling, and normally I don't share my private journals here on my blog. However, today is an exception mainly because I'm tired of talking about and writing about the events of April 29 and the days following while I was still hospitalized. I'm also inserting my own fresh thoughts here, now that I have had time to process, but here goes: ***************************************************************************************************************************** "Around the Mountain" (written May 12, 2021) Surgery was supposed to have been thirteen days ago. You heard that right. Was supposed to. As much as I had prepped and prayed about surgery as I prepared my heart for what was to be—either I would survive or not survive valve job number four—it never entered into my mind that not having surgery was an option as well. I chose one of my Elly and Grace tank tops the morning of April 29: “And if not, He is still good.” I wore it mainly for Mike, just in case I did not make it out of surgery alive. It’s a strange, surreal thing, thinking about not surviving. Planning for the what-if if I don’t. I wanted Mike to feel some comfort that I would be OK, and I wore the tank even to keep my own mind at ease. If not, God is still good. I didn’t realize the impact of those words until later. If not surgery, God is still good. Tears welled in my eyes as I tried to fix my eyes on Jesus on the ride to the hospital. I listened particularly to Colton Dixon’s “Through All of It” as I reflected on my life. After all the pre-op preparation—registering at Admitting, waiting to be taken back to the short-stay unit to get undressed and changed into a gown—I tried to settle my mind and my heart. This is it, I thought. God, my future is in Your Hands. Either I will wake up with an entirely new valve working in my heart, or I will be home with You. The rest is a bluster. I remember meeting the anesthesiologist, seeing my surgeon as he explained the surgery, even saying "later" to Mike. And then I woke up. I remember thinking how awesome it was that I was breathing on my own, I felt a cut in my chest, and I was certain that surgery had gone well. I was confused by the fact that I was wheeled back into the short-stay unit and thought perhaps that the ICU was full and that’s why I was back there at the PACU (Post-Anesthesia Care Unit). But then I saw Mike as I started to regain some clarity, and he told me surgery didn’t happen. He said the surgeon would be by to explain everything. Shortly, my surgeon came by and told me that surgery did not happen because there was nothing wrong with my valve. It was unstuck. I had been prepped with the central and arterial lines, I was under anesthesia, I was intubated, and my surgeon had done a TEE. He consulted with three other doctors—even FaceTimed with Doc who had the sharpest reaction of, "NO! NO! NO! DON'T DO IT!" (my surgeon said he’d wished he had recorded the conversation)—and decided not to proceed. Still, he said, “I want to check your valve again before I send you home. If your valve sticks again, I’m going to do the surgery.” I felt as if I were a kid being threatened by my father: If you do this one more time, you're grounded! Cooperate, valve! I was glad not to be facing surgery at that time. Never before had I been so happy to hear that surgery was not a possibility. I was sent to the ICU later that evening, and even the ICU nurses were astonished to learn that surgery was a bust. It’s rare that a surgery is aborted in the OR. Still, I was on “NPO” that night in case another echo and/or TEE showed malfunction. The next morning, I had both, but not before my surgeon came in to explain everything—how the nature of valve repairs and replacements can be tricky and don’t always last forever, and we had no idea why my valve suddenly unstuck—and I found myself respecting my surgeon even more for choosing carefully to proceed. The echo had poor results, but the TEE revealed that my valve was working just fine as I was surrounded by an array of doctors who were there as extra pairs of eyes. I was highly sedated with propofol, but I heard one of the nurses say, “No surgery,” and I burst into tears. (Nurses on cardiac floor, nine days in the hospital, chaplains right on time, good and bad days): unfinished journal Logically, we can surmise that the reason why my valve finally unstuck is because the Lovenox shots I’d had as a bridge thinned my blood just enough to send any teeny-tiny clot packing, but then again, what about the pannus growth that had creeped in? Was the pannus not that bad? Pannus doesn’t just go away. But the part that really tugs ay me in all this is that God Himself unstuck my valve. He didn’t want me to have surgery. He said no to a fourth valve job. It was, in essence, a miracle. I remember prior to not surgery that I’d said if God chose to bring my CHD-affected butt back into this COVID-infected world that I better be grateful, that I better resume living with ThanksLIVING. *********************************************************************************************************************************** And that was all I wrote. I do remember the day of discharge as I was being wheeled out, running into a nice older lady who took one look at me and said, "God has healed you!" I replied, "He sure has," before I murmured the words to myself as reassurance. He. Sure. Has. Yes, staying in the hospital an extra nine days while I bridged with Heparin and was tied to an IV as my surgeon played around with new Coumadin dosing and I was subjected to needle pricks for lab work, extra echoes to check the performance of my valve, hoping and waiting for my surgeon to see those echo reports and the echoes themselves and declare that "everything looks good!" was boring and yet taxing. Having Mike visit me for the twelve hours that visiting hours were open was a blessing, but day after day blended into just sitting and waiting. Waiting for my new INR range of 3.0-3.5 to be met so I could go home. Waiting to see my surgeon and read his face for clues before he even said a word. Nicely, realizing that my surgeon and I have a similar wicked sense of humor that's dryly sarcastic. Mad respect for you, Doctor! The good part of this experience is realizing that perhaps all I needed was a hard reset. Perhaps I needed to get all the way in the OR only to have surgery canceled to realize that we need to readjust my INR range and dosing to prevent my valve from sticking again. And, in a way, that emerging scar on my chest is a reminder of that. Another good part is that I am now able to start self-testing my INR at home in between Coumadin Clinic visits. I was trained yesterday by the company that helps monitor my INR, and discovered that my INR was 2.5! Thankfully I was able to call my Coumadin Clinic nurse to inform her so that we could adjust my dosage before I report to the Coumadin Clinic again on Friday. That got me thinking: Not only am I now able to test at home weekly and catch low INRs so we can adjust accordingly, but also, at some point prior to "not surgery" I may very well have been subtherapeutic enough to cause a clot on the valve, if that was indeed the problem. Anyway, as I reflect on this season of my life, I do think about the significance of April. April 11, 2006, and April 29, 2021. In the hospital, I did watch the Sunday sermon on YouTube as Pastor Buddy shared the week's message, "Rebuilding the City of Your Soul." In the sermon, he referenced Jeremiah 29:11 (one of my favorite Bible verses) and flipped it around as a personal message, "For I know the plans You have for me, Lord, plans to prosper me and not to harm me." And then I thought about April 11, the day my valve journey began, and April 29, a new reset, a new chapter. The Lord has plans for me, and they are good plans. Surgery was canceled for a reason, and although I may not know now what reasons that was for, I can know that I can look forward to a bright future. As I emerge from this experience--and yes, it was traumatic despite not having surgery--I can shed the shackles of bleh that I've been feeling. I can look forward to each day anew. I can finally start living with ThanksLIVING. Life.
We all know that life is what happens when you're making other plans, and since I have not published a blog post in over two years now, there is much to catch up on. Unless you have been in a cave the past year, you know about COVID and how this potentially deadly virus has changed the landscape of our society and our world. Personally, I have been dealing with life. Trying to manage in a pandemic. Before that, trying to manage living as a middle-aged woman with a congenital heart defect and heart failure (HFpEF), being a high school English teacher and all the fun and frustration that entails especially with COVID and having to teach online most of this year...and blissfully ignorant of the fact that heart valve replacements don't always work. I have been doing so much personal journaling lately that I feel that I'm being redundant in this blog post. Truthfully, I thought that my valve--Judy St. Abbott as I named it--would last me the rest of my life. That I would never have to think about my valve ever again. I'd see Doc for my yearly echoes and quarterly appointments, medication changes and adjustments, and that would be it. I did not imagine that I would need my valve replaced again, and in the middle of a pandemic. For reals. This all started with gynecological issues that I don't really want or need to get into on a public blog. Simply, I was going to be having a hysterectomy back in February and be done with the literal pain my female parts were (and are!) still causing me. Because I'm considered "high-risk" due to the fact that I take Coumadin, and also a heart patient, I needed cardiac clearance. That meant an echo months before my usual echo date. I had my echo this year in January instead of the usual July. I thought that would be it. Get cleared, have surgery, be done. My hysterectomy got canceled because of the amount of COVID patients in the hospital. I went to see Doc for my follow-up a few weeks later, and he dropped the bomb as he often does; and as he often does, he was seemingly nonchalant about the whole thing. I sense that is his way of not getting too worked up over something that may or may not be all that serious, and I know he doesn't want to alarm me. "Debra...your gradient is eight...you have some mild stenosis of the valve...could be pannus growth..." All that he said was mixed up in my head, and what I quoted above is the basic gist of what Doc told me. "How do you feel about maybe not having your hysterectomy until the end of summer?" he then asked as he studied my report on his computer screen. I thought, Well, this must be pretty serious if he wants me to put the hysterectomy on hold! And then: "Let's do a TEE in June when school is out." Doc's nurse wasn't having that, and I thank her for going to bat for me in insisting that we do the TEE sooner. But as my own personal history has shown, Doc likes to do TEEs whenever he's concerned about what he sees on an echo, and then he usually is OK with what he sees on the TEE, and we go back to see-you-in-three-months-for-your-next-checkup. A month ago today I had that TEE, and it's been a whirlwind since. Again, not to be redundant with what I've already written in my personal journal, Doc did my TEE and the look on his face after he had finished as he sat on a chair across the short-stay room I was in is sealed in my mind. He had taken off his glasses and I could clearly see the look in his eyes: So many emotions from frustration, to concern, to every cuss word in the book. I was starting to regain my lucidity, and I won't forget that look. I had even heard him talking on his cell phone and telling the surgeon that I had "dysfunction of the mitral valve." So you know that pannus he had mentioned at my echo report appointment? Yup, my valve is clogged with pannus (which is basically a fancy word for scar tissue). One of my leaflets is stuck open, if you imagine having a door partially opened in a room. I won't get into the fact that Doc advised me to raise my Coumadin dosage to try to "unstick" my valve because he thought maybe there was a blood clot that was really the culprit. However, Doc did say the following Wednesday at my follow-up-to-the-TEE appointment that the pannus growth is impacting the valvular function. He insisted that instead of waiting for the surgeon's office to call me, I call them as soon as [you] get home. It was that serious. My husband and I met with the surgeon the following Monday, March 29. No-nonsense, the surgeon told us both that this surgery is needed. There is no way around it. I was amazed when he listened to my valve click as he stood about two feet away from me, his ear turned to my chest. Yup, the valve sounds bad. And here I am, ten days before surgery, knowing that I am about to embark on valve surgery number four. I'm such a rare case of having each of my valve surgeries not work that the surgeon's nurse is excited to meet me. Not kidding about that! Yesterday I listened to Pastor Rick's sermon on YouTube. Even though church services have resumed in-person (and outdoors), I still prefer to watch online, cozied up in my loungewear. And, I am still recovering (sort of) from Doc's angiogram on me from last Thursday when he poked me a million times just to try to access a decent femoral artery or vein area. The message was about "Withstanding the Winds of Life." You may know, if you've been reading my blog, that the name of this blog is multi-layered: The Heart Valve Buffet as in "one of each kind" but also "to be buffeted," as by a wind because I have had to deal with so much the last fifteen years with my CHD. I even learned yesterday that another definition of buffet is "to make one's way especially under difficult circumstances." (Thanks, Merriam-Webster!) I have been making my way through life's challenges, through a pandemic, and now through my next valve journey as I prepare (possibly) to have an On-X valve this time. Pannus formation is exceptionally rare, and seriously, only the Lord knows why all my valve surgeries have not lasted. Why my repair only gave me almost ten more years, why my tissue valve kept sticking to my heart wall, and why this valve is clogged with scar tissue growth. I don't know why God has given me this challenge, why I'm the one with the multiple surgeries and valves that have only lasted a short while, and why God believes 2021 is a good year for me to go through this again. I know that this surgery is also exceptionally risky: The risks of complications this time are higher than the other 3 (4) times I've been opened up. I can be positive and resolute and say that this surgery will be smooth, and that I'll be back here blogging again in a few weeks. The reality is that I may not survive this surgery. I can have the best surgeon in the world, but if my heart is tired and the Lord wants to bring me home, that is His Will. I do miss my mom and my grandma and my dad and all my friends who have gone before me. I commit my life to the Lord. My future is in His hands. I don't know if this valve journey that started fifteen years ago on April 11, 2006 will conclude on April 29, 2021. It will have a conclusion, but I don't know if it will be a continuation-- another chapter-- or if it will be the end of the book. Nevertheless, until my surgery in ten days' time, I will make my way through this difficult circumstance. First, wow. It's been four months since I've written a blog post. Because, life. I've found myself humming along with the rhythm of life--going back to work full-time, teaching and lesson planning and grading and feeling completely normal again. While it has been and will always be that being a CHD'er is constantly running scripts in the back of my mind and it all feels normal, there are times when I'm struck by the gravity of it all. I have a mechanical heart valve. I've been opened up four times. If I don't take my Coumadin, I will throw a clot. My valve could get infected. This sucks! And yet--even in those moments of raw reality--I'm thrust back into the rhythm of life. Grading papers. Lesson planning. Watching a crime show on the ID GO app. Eating tri tip at Lucille's with my husband. Life. But then reality gripped me a few months ago. Thank God for my Coumadin Clinic nurse! I found myself short of breath again. As Doc V says, that shortness of breath as history has dictated, is a warning shot for me. What's wrong with my valve? But funny, I wasn't worried about my valve. In the shower, I was noticing how much weight I was carrying in my trunk. Every time I'd go to the Coumadin Clinic and be weighed, I'd weigh a little more. I wasn't eating cheesecake every day for breakfast. I wasn't sedentary. But I'd weigh five more pounds as my twice-monthly checkups. And then another five. And another. A normal pant size for me when I'm not actively running 5 Ks is a 12. But my 14s were tight, especially in my engorged thighs. My Coumadin Clinic nurse looked at me and said, "Maybe you should get your thyroid checked. You're at that age. Or, your BNP." BNP. Short for B-Type Natriuretic Peptide. Essentially, a marker for heart failure. For most people, a BNP under 100 is normal. Anything over 150 is not good, and don't get me started on over 500 or 900! It made sense, I thought. I'm short of breath. I'm gaining weight despite no change in my diet or activity. Am I...in heart failure? Better yet, WHY am I in heart failure? Thanks to my friends at the American Heart Association, here is some information about heart failure:https://www.heart.org/en/health-topics/heart-failure/what-is-heart-failure Heart failure doesn't mean that your heart has stopped working or will stop working. It doesn't mean that you will drop dead from a heart attack in two seconds. What is does mean is that your heart is overloaded and working really hard for a variety of reasons. And, according to the AHA, people can live full and active lives in spite of heart failure. Some of my heart friends live with HF, and although their lives may be limited to some degree, they are able to work, play, and do most anything they like. I just want to put it out there because often times there are so many myths and misconceptions about heart disease of any kind. In fact, someone recently asked me if I was allowed to exercise. I wanted to say, "DUH!" but I simply said, "I don't have many restrictions." Obviously I'm not going to play football and risk a concussion on Coumadin, but I can walk, I can run, I can go to the gym. Anyway, that right there is a blog for another time. Anyway, I did call Doc's nurse about testing my thyroid and BNP, and I saw Doc right before Christmas. (FYI, my thyroid was fine). I wanted to punch the fool. Sorry, Doc, if you're reading this, I hope you realize what a doofus you were when we first met about the BNP test. "I'm not worried about your BNP," he said (my BNP was 179), "unless it's over 200." Then: "One hundred sixty-six pounds?" he gasped as he looked at my chart. "I know it's the holidays, but you've gained eleven pounds since last time. You need to be watching what you eat and exercising. You know, you live closer to the beach now, so there's no excuse not to walk." "I'm short of breath," I protested (the magic words!) "It's because you're carrying extra weight," he retorted. Long story short, I talked Doc into putting me on Lasix (a diuretic that also works as a heart failure medication). And potassium to counteract the effects of the Lasix removing all my water and thereby potassium. He reluctantly agreed, I'm sure convinced that he was doing this to prove a point: The extra weight was fat, not fluid. Still, he would re-test the BNP in February. I waited until winter break started a week later to begin Lasix. I lost 14 pounds the first time. That's right. Fourteen pounds. As the fluid was flushed from my body, I could breathe better. My thighs didn't feel like tree trunks. I could actually see that I have a waist! We re-tested the BNP a couple weeks ago, and even with my only-on-Saturday-or-Sunday Lasix-taking (because what teacher has time to go to the bathroom during class?), my BNP was now close to 300. Doc tried to give me the ol' song and dance about Distended Deb (no, it's just asthma or "residual" pulmonary hypertension from surgery number one in 2006; no, you're just getting fat, blah blah blah), but I showed him my journal. For any of you who are dealing with medical issues, document everything and show your doctor! I wish I'd done that to start with. Keep[ record of your symptoms, what activities bring on symptoms, etc. Keeping a journal is key! (Seriously, Doc, I was about to go get a second opinion until you finally listened to me! I know I'm not your "typical" patient with my congenital heart defect and all, but good grief, Dude!) "Look at this," I pointed out. His jaw about hit the floor. "Wow. Fourteen pounds?" "Yes, Doc. Fourteen pounds." Doc isn't convinced this is heart failure. "Why else am I having classic symptoms?" I challenged. "I'm short of breath, I'm tired, my PVCs are out of control, I cough when I lie down..." But here is the evidence. Everything above, to begin with. But also: * The fact that my heart has been cut into four times over the past thirteen years. * The fact that I had a heart attack...almost 44 years ago, but still. *The fact that I have had several ablations and basically have had my heart scarred up. *The fact that I have had leaky heart valves in different forms in 2006, 2015, and 2016-17. So what is making my heart work so hard? We are about to find out. Doc made me promise him I would increase my Lasix doses to four times a week (reduced dose but more frequently), re-test the BNP a third time in two weeks, keep the excess fluid off (see the first point above), and then test. We will either do one of these tests: https://www.heart.org/en/health-topics/heart-failure/diagnosing-heart-failure/common-tests-for-heart-failure More than likely a TEE or a heart cath. Still, heart failure doesn't mean failure. But my heart is mad and we need to know why. Meanwhile, we need to take a load off. For more information and/or support to help you Rise Above HF, visit: http://www.heart.org/HEARTORG/Conditions/HeartFailure/Rise-Above-Heart-Failure-Alliance_UCM_478548_SubHomePage.jsp What did I write about last time? Yeah, life goes on. It's hard to believe it's already October 2018. It still seems as if yesterday I was in the drive-thru at the Coffee Bean & Tea Leaf near my old house, marveling at the fact that one of the baristas was changing out the regular drink menu for the holiday drink menu. Mmmm...peppermint mocha! (Now that Mike and I moved in August into our own home and have a mortgage payment, I finally have my own home-brewing coffee pot and I actually bought International Delight's Peppermint Mocha coffee creamer last weekend because I'd had enough Pumpkin Spice. Yum!). But yeah, about that. As I was sitting in the drive-thru on October 31, my first full day on medical leave as I anticipated surgery, I was thinking about how funny life is. How only a little over a year earlier I'd had my second valve surgery, that I was in heart failure at that moment, and that it was getting close to 2018. Here I am today, on my niece's 27th birthday (it seems like yesterday I was a junior in high school and she was born; now I'm teaching juniors!), marveling at the fact that it's almost 2019. Where does the time go? Facebook likes to remind us of "what happened on this day" every day. Yes, Facebook, thank you for reminding me that my mom died eleven years ago, but I digress. What just popped up in Memories the other day was a post of mine from 2016 when I'd given a presentation at Edwards Lifesciences. The photo below is of Mike Mussallem, the CEO of Edwards, presenting me with a framed photo of my heart valve team. Also below in italics is what I posted on Facebook the next day, still in awe, appreciation, and also disbelief that it took 41 years for me to be officially diagnosed with a perinatal stroke. Today is my four-month new valversary! ️️️️ Long post ahead... For years I struggled with accepting myself. While I never really thought much of being a heart patient--only when I saw my pediatric cardiologist for annual check-ups--I was ashamed of my right-sided weakness because I didn't know how to explain it. Kids can be cruel and growing up I was called names and bullied for my disability. A teacher in junior high even failed me on an oral test because of my speech impediment. [Side note: This is why I never give less than a D on my students' presentations.] However, in the last ten years, ever since I had to confront heart disease head on, I have learned to accept myself. Learning more about the physical aspects that make me, me and getting involved with the American Heart Association have helped me share my story, advocate, and meet others like me. I belong to a special "club." I AM A SURVIVOR. Two weeks ago, I finally had an answer as to what caused my right hemiparesis. I think deep down I'd always known the answer, but having an MRI, meeting with a neurologist, and finding out that I had a stroke in the birth canal, added more to my story. I even cried when I got home because I finally had an answer. Connecting with the President of the International Alliance for Pediatric Stroke helped fill in information that had been missing for 41 years. Last night, I had the true honor of sharing my story at the Edwards Lifesciences Champions for Life Employee Recognition Dinner. I was honored to meet the CEO as well as the Executive Leadership Team, and meet a man after the ceremony who told me that my next valve surgery will indeed be a TMVR (Transcatheter Mitral Valve Replacement). I had never been so proud to be the person I am today. The CEO presented me with a framed photo of the team in Singapore that made my valve. Awesome! I may still have a ways to go in finally loving who I am, but I am proud to be not only a heart disease, but also a stroke survivor. *** I remember how honored I felt to have had the opportunity to share my story. Out of all the thousands of patients who'd had bovine pericardial valves implanted in them, I was chosen to speak at the event. But life is funny. You think your life is heading straight down this path, and everything is normal--maybe finally, for once--and right with the world, and then God steers you in a whole new direction! I had no idea, other than being aware of the shortness of breath and easy fatigue (which I had ascribed to being healing effects), that my valve was already failing. That thirteen months from that presentation at Edwards Lifesciences, I'd be having my valve replaced again. For a split-second I wondered why God would allow me to go through yet another valve surgery. But I knew why, deep down. It was another chapter in my Valve Story. I could almost sense the Lord touching me on my shoulder and saying, "Trust Me. I got this. I know what I'm doing." I could share my story with others as I'm doing today as I sit here at my computer writing this blog post. I've had a valve repair, a tissue replacement, and a mechanical replacement: I bellied up to the Heart Valve Buffet. I can speak on what it's like to have had all three types. But after this surgery, as I touched on earlier, there was crushing post-op depression. It's interesting to see how far we've come in the last twenty years with self-acceptance when it comes to our bodies (as I was going through old teen magazines from the 90s as I was packing and getting ready to move, every article that dealt with weight was that a weight problem was indeed a problem--something to be ashamed of and fix with exercise and diet and clothes that hid your size), but when it comes to mental health, depression is still seen by many as a character flaw. And as a Christian who's depressed? Girl, you're not trusting in Jesus enough! I feel so much better than I did last December, or February, or April, or even July. I remember telling my therapist after I'd been taking Celexa for a few weeks and it was already starting to make me feel as if I'd come back into myself again: "The meds are great! I feel like they're a conduit for feeling Jesus's peace!" And I was feeling great. I felt joy. I wasn't worried (so much). I'd taken an "It is what it is" approach and learned to just let things be. I've been off the meds since August, and other than normal up-and-down feelings, I can happily say that depression has no hold on me. At the same time, I know what to look out for and what to do if I start to feel bad again. And since I've been more openly discussing post-op depression with others who have gotten the Heart Valve Surgery T-Shirt, so to speak, I've realized a couple things. 1) Post-op depression happens to a lot of us; and 2) Post-op depression is barely recognized. I recently typed in loosely, "post-cardiac surgery depression" and Google returns a few broad things. There are a couple medical journals that touch on depression in heart attack survivors, but many results barely bat an eye at post-cardiac surgery depression itself. Most that do attribute depression to being older when surgery is performed. There are 20-year-olds who are depressed after heart surgery, yo! The thing that really irks me, though, is when people tell others, "You should be so grateful to be alive! Cheer up!" Like, I would if I could. I was--and am--grateful to be alive. I know that I could have died in surgery, especially from the complication the night of. And maybe that's why the depression got a stranglehold on me--two open-heart surgeries within twelve hours of each other. Maybe deep inside my subconscious, I was more scared and worried than I thought and it festered and burst into all-out depression when it did. And as much as I love my cardiologist, I wanted to punch him in the face when he told me dismissively, "Just move on, Debra, you're fine." Dude. I. Was. Depressed. I could barely get myself to do anything. Many days, especially after Mike's FMLA was over, I'd stay in my PJs all day and watch crime shows on the ID GO app on our iPad. It took me a long time to come back in to myself. I honestly wasn't sure I'd even be able to go back to work. But things improved, and I went back to work, and now the first quarter of the school year is almost over! Where does the time go? Time is a funny thing. Soon I will be celebrating my first new valversary! But more importantly in this messy blog post today, I want to ask: Why aren't we (patients, family members, doctors, etc.) fully recognizing and addressing post-cardiac surgery depression? When I first started this blog, I was determined to write as frequently as a lovestruck twelve-year-old with a diary. But if you've been following me, you've seen a smattering of posts and the fact that I haven't written since my dad passed away in May. So, an update (some of the following, I hope, will turn into individual blog topics soon):
1. Post-op depression. It's real, it sucks, and just when I was about to feel better, my dad passed away. So there's that. 2. My husband Mike and I moved to a new city. 3. I went back to my job as a teacher. 4. Stressed backwards spells desserts. :-) 5. It's always interesting how things fall into place. And yet, the best laid plans... I decided to write today because my fellow Heart Valve Ambassador, Susan, had just read one of my posts yesterday after liking my tweet. I neglected to mention that I tweeted for the first time in months last Friday. I got a lot of likes! OK, 24 likes is pretty darn good for someone like me. I'm no Kim Kardashian, maybe except for the fact that our married names are directions, and we both have Big Booty. But I digress. Susan is an amazing--beyond amazing--survivor herself, and you can check out her blog at www.stronglifenow.com. When she said that she loved my post, I was grateful. Maybe going back to work and knowing that what I do for a living can make even the smallest impact, and getting a positive reaction from my friend, made me realize that while I may not have a giant following on this blog here, it's good to share our experiences. Today, it's all about this: LIFE. GOES. ON. It's hard to describe the feeling I felt the day my dad passed as my brother and Mike ran out to grab a U-Haul so they could transport my dad's stuff from his nursing home room and my sister-in-law and I were going through old cards and letters my dad had kept in his desk in his room, but as I heard the voices of nurses and residents as they walked down the hall, it struck me. When we pass, the world doesn't end. People still have things to do. Life doesn't come to a halt. The next few weeks were a bluster and other than the day we had my dad's service, I don't remember much of the day-to-day after that. Mike and I began looking for a new home. I was finishing cardiac rehab. I was still tired and didn't do much. I was still spending days sitting on the couch watching programs on the ID GO app on our iPad. Mike and I found a house. We were in escrow for 45 days as we packed our stuff. Eventually, I had to think about returning to work. Life went on. It goes on. Mike and I moved into our new home a few weeks ago, and then school started. We made sure--thanks to my spectacular sister-in-law--that we had the kitchen and bedrooms and bathrooms set up, and especially the office so that I had a place to do my schoolwork. And so, on the eleven-year-anniversary of my mom's passing, I began Year 18 of my teaching assignment. The buzzing and running around as Mike and I moved transitioned me smoothly to the busy-ness of my job. One of my friends joked that even though I hadn't been working for almost eight months, teaching was like riding a bicycle. It sure was (even though I never learned to ride a bike). I got my room together, planned lessons and copied handouts, and welcomed my new set of students the way I always had done dozens of times before. As we begin our third week of school, valve surgery #3 seems as if it were a century ago...and yet, it seems as if it were yesterday. Does that make sense? I'm seeing my therapist less frequently now for a variety of reasons, but most importantly that I'm coming back into myself, the new myself. Her concern, as she had expressed for months, was that I would not be able to keep up with the demands of my job physically. When I checked in with her last week, she commented, "You seem to be where God wants you right now. I think you would have known almost immediately if your body wasn't ready for you to go back to work." True. I'm tired, but teacher-tired. Maybe a little CHD-tired, too, but I know my limits: when to work my tail off, and when to rest. Right now my weekends are all about unpacking and organizing, and working on school stuff. But in the evenings, it's Netflix and chill with Mike. And a good night's rest, too. And coffee. Delicious, warm coffee. Yup, life goes on. But on Friday--and it is common knowledge among the staff and students that I'm the resident heart patient--one of my students asked me what I ended up tweeting on Friday. "Did you really have four heart surgeries?" he asked quizzically. "Yup, sure did," I said, and explained my story to this confused teenager. He absorbed what I said, and then in true teen fashion quipped, "Well, you don't act like you have a heart defect!" Like, how am I supposed to act? But perhaps that is why I do what I do. Why I feel the Lord called me to be a teacher on a chilly April night in 1997. To educate. Not only to teach teens how to analyze writing as they improve their own and hone their skills, but also to teach my students that a congenital heart defect doesn't have to limit your life. After all, life goes on. It's been a while. <--(That's my (step)dad and me at my 13th birthday). I don't know if I've been conditioned over the course of my life to feel this way, but I've always lived, I guess, as if I'm waiting for the other shoe to drop. Afraid to feel any sense or semblance of joy because it's transient. Why be happy? A storm is coming. Always. ALL THE TIME. Maybe this started when my biological dad passed away when I was nine years old. I saw him wither away before my very eyes as pancreatic cancer ate away at him. Tough stuff for a kid to deal with, and I easily, though I did not recognize it at the time, became jaded by life and death. I was strong for my mom when she fell apart after my dad died. Strong for my stepdad when he fell apart when my mom died (also of pancreatic cancer). Now that my stepdad passed away a day before Mother's Day just a couple weeks ago, I'm being strong for myself, I guess. My hardened heart, also literally hardened by a mechanical mitral valve. And before that just a few weeks ago, melanoma. Skin cancer. A super-early stage, what's called lentigo maligna, on my right hand's middle finger. Two painful excisions, and the margins are clear, thank God! But my dermatologist, who's now committed me to seeing him every three months now for a check-up, decided to cut off a mole on my back just last week as well. I should know the results of that biopsy next week. So, yeah, I've been thinking a lot about mortality lately. Four heart surgeries. Skin cancer. My parents. All three of them. So this post isn't really about recovering from my valve surgery six months ago yesterday, in fact. It's just a rambling musing on when life just keeps trucking on no matter what. I put my life on hold for quite a while now. But the days still turn into nights, days and nights turn into weeks, and weeks turn into months. I'm here, a veritable orphan, if you will. All my parents are gone. We had my dad's service last week, and I wrote a eulogy of sorts for him. Here is the text below: My Dad They say the way to a man’s heart is through his stomach, but for my mom, the way to her heart was through her daughter. In the spring of 1987, three years after she was widowed, my mom met Marshall through a family friend. Because she had a young daughter who was still recovering from the loss of her father, my mom was wisely reluctant to bring any boyfriends over unless she was serious about them. This was until she met Marshall. After weeks of phone calls and dates, my mom asked me how I’d feel about meeting her new beau. Even as an eleven-year-old, I could sense the giddiness in my mother’s voice and the sparkle in her eyes when she spoke of this man she was dating. Really, I was happy for her so I agreed. Not long after, I met Marshall, or Marsh, as he told me to call him, and he “romanced” me, so to speak. He took this bored pre-teen who was on summer vacation out on adventures every day for a week. We went to the Natural History Museum, the California Science Center, Hollywood, lunches, and even to his job at North American Rockwell to see what he did for a living as an accomplished aerospace engineer. It wasn’t long before I, too, had fallen head over heels for this man and hoped that my mom would marry him. Not many men would treat their girlfriend’s kid the way Marsh treated me. I knew he was special. That summer, my mom and I flew out to Iowa to visit my grandma. Marsh decided to pick us up in Iowa at the conclusion of our vacation and that he did! He made the 2,000 mile journey in his camper to come get us, and on our way home, we visited several national landmarks as we shared more vacation time with him. How many men would do something as awesome as that for their girlfriend and her kid? A year later, Marsh proposed to my mom over dinner with me as their witness, and they made plans to find a home together. Because Marsh was an old car and antique engine buff, he wanted room for his toys, but every house we looked at lacked the space he wanted. We ended up remodeling his home and underwent a journey of epic proportions. In the summer of 1989, as I was about to start high school, Mom and Marsh married. Since their home was still being remodeled, Mom and Marsh moved into the new three-car garage and I had my own space in the camper. I’ll never forget celebrating our first Christmas as a family with my brothers and sisters-in-law in the garage, complete with a Christmas tree! If this was any indication, Marsh certainly loved exploring. I have fond memories of rock-hopping with him and my mom at the beach or riding in his dune buggy all over the desert when we went camping most summers. A scar on my chin is a reminder of that one time he hit a rock in his dune buggy and my face smacked the sapphire ring he’d bought me for my junior high graduation. I never called him Marsh after he and my mom maried. He was my Dad. He filled in areas of my life made empty by my biological dad’s passing. He never referred to me as “Phyllis’s kid,” or as his stepdaughter. I was his daughter. And I really felt that I was his daughter. He was my “Paw,” and I was his “Kidnik,” or “Brat,” depending on what day it was and what kind of adolescent-fueled mood I was in. He paid for my braces and college, helped pay for my wedding and walked me down the aisle—things any dad would do for his daughter. Even when a classmate met my dad at our high school graduation, she remarked how much I looked like him. She didn’t know that he wasn’t my biological father, and that was OK. I remembering blushing with pride that people could assume he was in fact my “real dad”. Twenty-five years ago today, actually, Dad took my best friend and me, along with our dates, to prom in one of his old Packards, a 1942 Super Eight that he’d just finished refurbishing. It was an unexpected treasure he’d found in Iowa the summer before and he’d had the car shipped home so he could fix it up. I remember how proud he was to take me, his “Kidnik” to her senior prom. He dressed in a suit, complete with a chauffer’s hat, for the occasion. I was mixed with a bit of embarrassment and pride—embarrassed that my dad was driving me to prom, but proud that my friends and I were the only ones showing up to prom in a Packard! Dad sure knew how to make me feel special. For 31 years, Marshall was my father. I got to have him as long as I had my mother before she herself passed away. Unfortunately, two years after my mom passed away, Dad developed dementia and over the years, I saw him gradually slip away. It hurt my heart to see a man who was once so vibrant and full of life slowly become a former shell of himself. But I know how much Dad loved working in aerospace and how much he loved exploring the world. I like to think that now he knows all the mysteries of the universe and he is happy among the stars as he explores the galaxies. I'd give anything to walk out to the garage and see my dad at his workbench. Dementia had control of his body, but a heart attack took him away. Right now all I can think about is how fragile hearts are. Mine, tempered by CHD. My stepdad's history of heart disease. And right now, my heart just hurts and it feels like it weighs a ton, but the tears don't come, and they won't come, and I have to keep moving forward because I have things to do. And I can't allow myself to feel any joy because another storm is around the corner, and I'm afraid. I'm afraid my own heart will fail. I'm jealous of a 67-year-old woman.
No, she's not a super-hot former model who could pass for my age, but she is running circles around me. A fellow cardiac rehabber, she and I struck up a conversation the other day as we worked on the stationary bikes. "How long ago was your surgery?" she asked. "Five months ago this coming week," I replied. "How about you?" "Seven weeks ago," she said. Whoa! I wasn't allowed to start rehab for ten weeks after my surgery. I'd seen her for a few weeks during rehab but we had never had the opportunity to speak. Most cardiac rehab patients don't interact with each other all that much since we're being followed by the nurses as they check our blood pressure and ask us to rate the intensity of our activity on the Borg Scale. "How hard are you working?" is an often-asked question. I learned quickly that anything over a 13 is a big no-no. Anyway, as we chatted, I learned that she just had an aortic valve replacement. Though she didn't seem to know much about her own case, I gathered that she was likely originally scheduled to have a TAVR, but because our would-have-been mutual surgeon was unavailable, the surgeon who did do her surgery gave her a mini-sternotomy like me. "I've been wanting to talk to you," she admitted, "because every time I see you, I think, 'Oh, she's too young to be here.'" Story of my life. I gave her the "Reader's Digest" version of my heart story and listened to hers. She just went back to work two weeks ago. Almost immediately after her surgery, she said, she felt healthy again after being plagued with heart valve failure symptoms for a while. She happily shared that her energy is exponentially increasing every week. Really, she is glad to be resuming her life. And almost like seeing the most beautiful, popular girl at school walk through the door, I was struck with jealousy. Deep in the pit of my stomach. A punch of envy. Since shortly before my surgery, I've been watching Pastor Rick Warren's sermons online. He's now doing a series called "Living on a Margin." Beset by health problems himself, he felt that it would be a good time to do this series with his congregation; and because I hadn't yet watched the sermon as of my counseling session last week (sleep took precedence that Sunday after a whirlwind few days), my therapist thought the series would speak directly to me. It did, and it has now in week 2. Pastor Rick talked this week about what motivates us not to rest. As I read the verse from Proverbs 14:30 that he shared: "A relaxed attitude lengthens a man's life, but jealousy rots it away," I realized my motivation--my frustration with my own personal progress--is that I'm jealous of my fellow rehabbers' progress. How come I'm not back at work when I planned to? Why am I still tired? Maybe I just need to push myself more. And then I realized that I want to prove something: that I'm not weak. That in itself is a blog for another day, but I had a teacher say to my class when he thought I was out of earshot after asking to go to the nurse with bad menstrual cramps that "Some people are just wimps." If only he knew what I've been through the last 12 years! Heart surgery ain't for wimps, that's for sure! And four heart surgeries...! I filled out copious notes as I listened to Sunday's sermon, and I've been thinking about the sermon quite a bit. GO. LAY. DOWN. (In green pastures.) I still imagine my sister-in-law talking to her dog, and I imagine Jesus saying that to me. Deb, be still. It's in my timing. You've had four heart surgeries! Go. Lay. Down. So I shouldn't feel bad that I go back to bed after Mike wakes me up to take my meds before he leaves for work and grab another two hours of sleep. And I shouldn't feel bad that I'm at week 20 and I'm still not ready for work and my energy is spotty. The woman I've been jealous of has only had one surgery. But! I made a milestone today, three days before my 5-month valversary. I ran at 4.5 MPH on the treadmill, one minute at a time, three times total. One minute at a time. One step at a time. I have a long way to go. Jesus is my pace setter. (By the way, I made an appointment at A Snail's Pace to get a formal running shoe fitting on my 6-month valversary!) |