Heart Surgery

 There is so much I want to share here. My mind and my heart are so full they are bursting. I'll do my best to tell this beautiful story as clearly as possible hopefully shedding light on truth, emotions, what's to come, and the timeline and all the God winks in this time. I also want to preface by telling you I am so thankful for the story God has given me. It's a story of grace and miracles. I am thankful that God would see fit to use me as a vessle for His glory and His will. My story began 33.5 years ago and it's not finished until He calls me home. So even though there has been almost exactly to the date 29 years ago since I had my last heart surgery and much beautiful life lived in between, the story continues and how God will be glorified through this journey He has given me. All for His glory, here's an update in my story:

February 14, 2024: First entry to this story -

Back in December I began taking a B complex vitamin because I felt SO IMMENSELY tired all the time. Granted, I homeschool and I'm working with my kids on my feet teaching, feeding, cleaning, dancing to be an entertaining teacher, and playing and exploring with them for a total of 12-14 hours a day. In that 12-14 hours of being a homeschool mama/SAHM - besides the daily tasks of the household and the kitchen and running all over creation to get Ellie to piano, dance, play dates, hikes, etc. (the list goes on)...even with the stupendous help of Eric doing dishes, putting Elias to bed most nights, taking Ellie to choir practice and American Heritage Girls for me, and really just being an amazing partner in the home and in parenthood after working a full day - I also add in a 5k or a 10k run, weight lifting, sprinting, hiking, and making plans for school lessons. 4 days a week I do two a day exercises + maybe a hike or stroll with the kids one day a week. People constantly ask me where I get the energy, how do I do this, etc. I always think to myself...I'm not really sure because I sincerely feel like a zombie. I sincerely have been feeling like the most intense exhaustion and I do think anybody doing all these things would feel quite tired to be sure...but the level of survival and pushing to keep going has been almost dreadful. This doesn't mean I've not been happy doing these things...it just means that I daily think to myself, "how am I going to make it another day; I'm so worn out; my entire self feels depleted." Even if I had a full week of perfect nights of sleep - I'd feel dead. Again, this is with amazing spousal help. I could not be more blessed with the way Eric helps me out around the house even though he works all day.

There was a time back this early summer in '23 where I was with the kids at my parents spending the night back home. Every single night like the creature of habit I am, I indulge in natural popcorn and a glass or two of wine. I'd sat down with my parents after the kids were in bed so that we may watch a crime show and unwind. This is something we love to do together. But before I could even really take bites of my snack I was asking my daddy to pause the show...I could NOT get a deep breath. It wasn't the first time even then this had happened in recent times. I told them I'd get my breath soon, I just needed to change my position, keep calm, and keep trying. They waited patiently on me and Mama finally suggested I try going out into the cool night air to see if that would help. I sat in a squat position leaning forward on the deck overlooking the moon on the lake and gently fought for a breath. It came. I did still struggle some later but not as badly. I chalked it up to tight thoracic cavity muscles, my crooked skeleton out of whack, and exhaustion.

Mid January of '24, I was outside playing with my kids having a grand day soaking in what little time of sunshine we had remaining when suddenly my phone alerted me of an email from PRISMA stating I owed quite a large sum of money for an upcoming couple of appointments. Baffled and dumbstruck I opened the email to discover I had an echocardiogram which is basically treated as a hospital admission and manages to really make a large contribution towards our out of pocket max. This echocardiogram appointment would of course be immediately followed by a visit with my cardiologist - my specialist in Adult CHD care. She is a blessing. I remember being so anxious because I didn't even realize I had an appointment coming up in 2 weeks...I don't live in the Upstate anymore, would I be able to go home for it? Would my parents be available to watch my kids for this appointment? How much money was in the HSA to cover this? I was bamboozled by the anxiety of just not being prepared. Don't ask me how I didn't know I had an appointment, haha, I am lucky to even know my name these current days! Anyway, I called Mama and I called Eric. Both got me calmed down; Mama told me they can watch the kids and Eric told me the finances were good and ready for this annual thing. I knew I had an appointment scheduled for '24...but for some reason I thought it was this summer! Praising God that He brought it to my attention and worked it out I could go as scheduled. 

A few nights later and still prior to the appointment to be had in February...once again I got settled in with Eric with my popcorn and my wine glass to watch TV and snuggle and unwind together. Right as Eric was getting our blankets and was about to sit beside me, I felt a rush like a flock of Canadian Geese in my chest - wings of birds flapping violently but then residing momentarily and briefly. I don't commonly encounter this sensation. It caused me to pause, startled me, then I grabbed my phone to document it so I could report it in a week to my specialist knowing she'd like to know but not thinking much of it...it's no secret to me I have regurgitation of blood in my heart and that's what this was...it just was far more pronounced an event than is normal for me to experience. I put my phone down and snuggled up to Eric. 

Two nights after this, at the end of January, I awoke in my bed in the middle of the night on my left side from dreaming to discover I could not get a deep breath - just as the aforementioned event in early summer. I tried sitting up in bed to no avail. I then proceeded to get down on the hard floor and get in my forward leaning low squat position to try and retrieve a deep breath. It took a while but I managed to grasp enough air to fill my lungs. I slowly got back in bed and laid on my right side. It didn't take 30 seconds for it to happen again. I repeated my process with success, yet, I still struggled most of the night to breathe easily. While I had experienced this before, this also is not so common and it bothered me. When such things happen, I have to mentally talk to myself to remain calm so that I won't exacerbate the situation with panic. 

One other thing that has been frustrating, new, and hard for me that I just didn't take for anything more than exhaustion and muscle exhaustion as well is my run times and my struggle to get deep breaths amidst my running. Early summer I was running my 5k comfortably at a 25min and some odd second - 26 minute flat time. If I was really pushing myself to that point of all out, full out, exertion, giving it all I had...I could get my 5k to 24 min and 32 seconds as my personal best. By the end of August however, I noticed I was really struggling more than normal to breathe, my run on the road was longer than normal - but I wasn't really paying attention to it -I just noticed it was slower- even on my treadmill days I was having to grab the bars to push up to grab a breath but I'd keep running. Breathing was becoming a struggle and my times weren't as good. They weren't terrible but they were comparable to when I first got into long distance running - times that I've shaved many minutes off of and could not for the life of me seem to do anymore. I didn't want to dread or hate running so I just started running a slower pace intentionally so that I could breathe comfortably. I figured the main issues here were the summer heat, physical exhaustion, just normal "I'm a busy, tired, strapped for personal time" mom. But summer ended and I knew the heat wasn't an issue. However; I felt discouraged but just figured this is how it is when you're a tired busy mama doing the best you can to even find a scrap of time to keep yourself strong and healthy and in shape. It didn't occur to me it could be anything else. 

So then came February 6, 2024 - the day of my echocardiogram and doctor appointment - all routine stuff. I do this annually. I actually enjoy going because I love seeing my heart and I love seeing my doctor. She is so important and special to me. She is one of my greatest blessings. She has held me for the best going on 11 years through joyful times and scary times. She encourages me in motherhood and in who I am personally. And I love who she is and her mission in medicine and her patient advocacy and her kindness and her amazing motherhood as well. She's just a God-send to me. 

I go in for my echo, I always take a selfie before hand because (besides the fact I'm a geriatric millenial haha!) I no longer get print outs of my heart as I did when I was a peds patient - something that I always looked forward to! But I like to document for myself what the Lord is doing - and the privilege to be alive to have an echo in the first place is by the works of His miraculous hands. I don't always share everything on social media, either. In fact I don't share half my life. Nobody needs to know everything and I just think it makes it more special for the ones who know me intimately enough to get my whole life offline. But I was going to share my little photo in my IG stories just for the fact that "heart days" as I call them are so important to me. But I had a feeling to wait and so I did. I felt peace and comfort and just couldn't wait to be done so I could go treat myself with Willy Taco, honey!! Because the Upstate is where it is AT for food and I MISS being near all the good eats. So when I come home you best believe I'm gonna try something new and/or get the things I can't get in the CSRA. Laying in the dark room on my side, echo in action, quietly thinking about my Willy cheesesteak quesadilla and alone time that is so rare...the dream bubble is popped and I'm drawn away from Tex Mex queso dripping heaven when the tech (whom I also love and adore) asked me, "did you feel that?" Not sure exactly what she meant, I replied, "I don't think so..." (Then again I was floating down a queso river in a tortilla boat only moments ago...) But I did sort of feel a sort of quickening...quite similar to the first time a new mother feels the tiniest little movements in her womb and she's not sure if its a gas bubble or a baby. But if I had been focused on anything else or doing something, I'd never have noticed it. It wasn't like those flock of geese taking flight in my chest the week prior. She said to me, "You are having a couple of PVC's - not too bad - just seeing them here and wondering if you notice them too." (PVC = Premature ventricular Contraction.) As a matter of fact I was thinking how I felt so calm she may think I'm not breathing at all, ironically, ha! I then cocked my head without compromising my position needed for the exam to watch. I can understand a lot though not most of what the screen tells - I've had COUNTLESS echos. I used to want to do this as a job, actually, but it is so much more than they are given credit for! What an amazing responsibility and talent. So, surgery was my next field of choice! She then asked me, "Are you having shortness of breath?" And I replied, "No ma'am....but I've had episodes of shortness of breath I plan to bring up with my doctor after this." Recounting back on this moment, I don't know if she meant right then or just in general...I wasn't prepared to even consider it. She said, "It's just I'd be surprised if you weren't based on what I see here." Now this does not scare me or alarm me...even if my heart is destitute, I want you to explain it to me. I love medical science. Love it with a passion, I do. I find it all so interesting especially learning about my own physical nature personally. I asked her a question, and she said, "Well, I can't say, your doctor will discuss with you and I'm afraid I said more than I should have already." I told her that I knew and understand that's the way it is, and not to worry because I like knowing whatever I can and I'm not concerned. I appreciate her diligence and I am so thankful for her attention to detail. 

I got cleaned up - knowing already my echo was probably not to the level of excellence I like to always hope it is...I texted Eric and my parents a short text - then went across the street to see my doctor. I had just enough time in this few minutes of transition of appointments to make sense now of what I'd just seen on the screen, and ALL these things I'd been feeling and experiencing for many months now. Maybe they did mean something more than just mama exertion and athlete exertion? But also....no way, right?

My B/P shot up from the time between my echo and my doctor visit...I know it was stress and nerves. And then I was frustrated to see my B/P so high from my normal all because I knew I was starting to put the puzzle pieces together. It was starting to all click like a total revelation. But still I wasn't prepared mentally. 

During the visit, I discussed all these things that I've noticed a change in and all these abnormal experiences. As I was sitting there talking I was struggling even to breathe normally - another thing lost on me all this time - I realized after the entire visit that even when I read to the kids I have to pause for breaths. It all had been so slow progressing I just didn't really grasp it - like I said - it was all finally coming together...the pieces were connecting as I sat and talked. My mind was trying to stay calm but my heart was getting emotional. Finally, my specialist did say to me that it is time within the next 6 months to have this pulmonary valve replacement I'd been told of almost 11 years ago. She also informed me that this pulmonary valve replacement surgery would stave off the future anticipated tricuspid valve replacement surgery which would be open heart surgery (at this current time in medical science). She also explained that the pulmonary valve replacement surgery would now be able to be completed through a trans catheter procedure using a mechanical valve. 5 years ago, it would probably still have been an open heart procedure. How incredible is this advancement?! God's timing is perfect.

Backstory - almost 11 years ago (this October) - I met my new specialist for the first time. She revealed to me that I'd likely need a pulmonary valve replacement in the next 3-5 years. Sooner if I had children - which I also learned at this time I could in fact have - after having lived 23 years believing I probably wouldn't be allowed to. That was all such a shock then too, as I had never been prepared as a child - I believe my parents were - but it had been lost on me that I'd ever need any surgery ever again in my life for my heart. I had only begun dating Eric at this time...I was in love with him, we both wanted to get married, but we weren't even engaged yet and now I probably need to have kids within 5 years, likely? But look what God did with all that. It worked more perfectly than I could have ever planned myself. Here I am now with TWO crazy precious kids, homeschooling them, and I have the BEST husband EVER. 

This news was not anything I hadn't been prepared for in all these years, it was just a shock because I didn't anticipate this at this time. I gathered myself so I could listen and pay attention as my specialist explained and prepared me with such beautiful diligence. She really is the best. She also has taken the time to listen and know me on a personal level and so she is therefore able to calm and soothe my heart and mind too in a loving sister like way. 

I went out to my car and sat and released many many hard weeping tears. Mascara all over my face. I think I sat there for an hour before I finally regained my brain and took myself to lunch at Willy Taco alone. I sat in my car texting my inner circle of family and friends, praying, reviewing the notes, the facts, the future. I praised God. I thanked Him because no matter how bad this hurts to hear, HE IS GOOD and THIS IS GOOD. I got back to my parents to get the kids and return to GA. My sweet Daddy had tears in his eyes but was holding it together. I know they are more concerned than I am. I can handle me, but I'd be a puddle if it were my own child and that is how my parents feel. Eric was comforting me through text and being his engineer minded self - he began researching, looking at facts, procedures, outcomes, etc. He wraps his mind around the mechanics and numbers of things then he feels comfort as he finds understanding. He comforted me lovingly and he prayed over me. I don't really talk about these things aloud with friends and family because I'm really really quiet when I process news and emotions. As a matter of fact, my Daddy knows this so well about me that he will break the silence bubble I'm in to check on me (which I always appreciate). Eric gets it too and breaks it by just holding me closer and tighter. Both know I can't speak, but I could cry, and they both help me feel not so alone even if they can't fix it entirely. Writing like this is how I sort my feelings. It helps me to think rationally and to calm down and to turn to scripture and prayer. But better than my earthly daddy and my husband is the embrace of the Lord to my heart. He does know my every heart and pain and concern and pain. Every single one. He weeps with me. So when I call His name - even if I have no other words to say - the Holy Spirit intercedes for me, knows me perfectly and holds me close lifting my spirit and keeps me pushing on for the sake of my family.

Entry on March 18, 2024:

The next step would be an MRI scheduled for March 12 at 8:30 in the morning in Greer, SC. This MRI would provide a more thorough series of images to confirm what the echo was telling us. These images would then be sent by my specialist to the cardiac team at MUSC by referral by my specialist to proceed with the pulmonary valve surgery planning. Waiting from Feb. 6 to March 12 felt like agony because I just wanted to get the ball in high gear - I'm a Type A do-er. But these things take time and we must be patient. I just really wanted the complete picture and timeline. Finally on the afternoon of March 11 after a morning of picking flowers at my friend's beautiful farm in Woodruff, SC, having traveled home from GA to prepare for an early morning for the MRI the following day, I recieve a call from Prisma telling me they couldn't do my MRI at Greer because of policies and they would have to do it at Memorial and would have to rescheudle me. I love my health system, but let me tell you - ALWAYS advocate for yourself - be respectful, but do not let your health be ran over by anyone. I had driven nearly 3 hours to come home. Less than 24 hours before my appointment they are telling me they messed up and need to reschedule. No. I said, "I'm sorry but I do not live here, I've just gotten into town with my two children for whom I've had to arrange childcare. Is there no way you can make this happen as it is not even a full day's notice and your MRI scheduling department's mistake?" She then spoke to her manager and graciously a spot was made for me to arrive by 6:30 in the morning. (Still an hour away from my parent's home where I stay when I come home, I had to wake up at 4:45 AM - but this was better than having to reschedule and live in more anxiety waiting.) 

I showed up dark and early on a below freezing morning to the hospital and did a 45 minute long series of different breathing cycles as I laid still in the big, cold, roaring cylinder. I was so tired I nearly fell asleep even though I had to participate so heavily. After that exam I went to Tandem Creperie in TR and treated myself to a savory Santa Fe Crepe and chai latte. Then back to GA with the kids and to dance practice. Longest day ever. Haha! Eric took such good care of me when I finally landed on the couch for the evening.

March 15, I received the official report from the exam through my patient portal while I was helping out with my daughter's AHG troop on a "Nature Day." Reading the report with one of my best friend's beside me, I could deduce that in essence, the findings were consistent with the conversation I'd had Feb. 6 with my specialist. I texted my innner circle and kept right along with our nature day. I had a feeling that come Monday, I'd hear from my specialist with her word on what this meant. Sure enough she did contact me because she is AWESOME.

March 18, I began my run on my treadmill. About 1/2 a mile in I received a patient portal message from my specialist confirming that this MRI was consistent with our previous visit's discussion. She would make sure images were sent to MUSC if not already done so. I began crying in the midst of my run because it is a lot to take in emotinonally even though now I WAS prepared. I knew it was coming but it still hits those emotions. Through running and sweating and tears, I said aloud over and over and over until I felt the presence of the Holy Spirit surround me, "Ok God. I trust You. I thank You. I praise You. This is good, and YOU are good. Thank You God." I lifted my hands and tried to maintain balance and pace on the treadmill. The Holy Spirit filled the room and I felt lighter and my tears ceased. I told my innner circle, finsihed my run, then replied to my specialist.

She encouraged me to ask any questions. So I did reply with essentially asking about my tricuspid valve's future. I was too mentally displaced at that initial appointment when all this came out to ask - but I wanted to know if there was any estimation of when the tricuspid valve replacement surgery for my Ebstein's anomaly would be. When did we predict that happening and I wanted to confirm that at this current time and era of medical technology it would be open heart. She got right back to me with a very encouraging word that the prediction on the timeline for that particular procedure is really far off. Basically what will happen after the pulmonary valve is replaced, the right side of the heart will start to get smaller (it has become moderately to severely enlarged) and there is an expectancy then that the valve would leak less. There is already so much improvement in the technology for transcatheter intervention so it may be a possibility this will also result in a transcatheter procedure. We will continue praying about this through the years and cheering on those behind these medical advancements.  

The next item on the list would be to hear back from MUSC directly to schedule the trans cath pulmonary valve replacement surgery. This looks at this time for me to be in mid June. That would be perfect timing for me. I wouldn't even mind if it was at the time of our 9th wedding anniversary. We will have had a nice beach vacation with our kids in the beginning of June, and then we could knock this out and recover and proceed with a fun summer season full of celebrations and camping and friends and family.I am anxious to get it on the calendar as a girl who likes the full picture and plan but I know there are many hard working parts at play and I know I need to be patient. Everything will happen as it should in God's perfect time and plan. Also up next, I will meet with my specialist again on May 6 in Greenville, SC. I am looking forward to that also. I am so hopeful.

To conclude this topic for now, I want to sincerely state to anyone who has read this far, while news like this is always jarring to the system, I am grateful. People can ask, "Why me? Why is this my story?" Well, it's because it is the story that will bring God the most glory. It is the story that will provide you with great faith and strength and a deeper relationship with Jesus. "Consider it pure joy when you face trials of many kinds, becasue you know that the testing of your faith produces perseverance." - James 1:2-3. It doesn't make it feel good but man it sure brings peace and assurance when you trust in Him.

I want to share for encouragement to anyone in need as well a scripture list I printed and laminated in my closet, a song list I will continue to add to in these days, (will include in photos at the end) and I want to share one final word with you all. In 2018, I had the honor of sharing my story on behalf of the work my Dr. is doing in her field, with a Clemson sorority group gala. I saw the video again recently taken from the speech I gave and I began crying and felt such strength when I heard my own voice say to the crowded ballroom in regards to my future surgeries, "I'm not too scared. I have a mission and a purpose." That could not be more pure and honest from me. I am blessed with the mission of caring for and encouraging others who face the number one defect in newborns -CHD. I am blessed to live and do and thrive and excel in the NAME OF JESUS and in HIS mighty power. I pray and I faithfully believe that this timing now is perfect. He gave me two healthy babies and now He is going to give me a healthy new heart. This will be so good. This IS good. He's not finished with His story in my life yet. Let the stroy He gives to me give Him the greatest Glory.

I know many friends and families will ask how they can help me in this time. I am so thankful to already know my family is so cared for. That's a beautiful blessing! I'm blessed to have a lot of family who can and will be helping me. I am so particular about the healthy foods we eat in our home and I will prepare for that ahead of time such as when I had my two C-Sections. What I would covet is your prayers and loving words of encouragement. So many of you pull me through times you may never have known about with your Godly words, love and wisdom. Words are the greatest healer to my heart on this earth. It's how I process my emotions - as I sit here and blog words to you all. Words have power and I am so thankful for the healing and love they give my life. I love all of you friends and family! Let's praise the Lord for the chance to heal and be healthy! Amen!