SIX FREAKING MONTHS!! ❤️
Wow, it feels like a lifetime ago. Honestly, I feel the best I have ever felt in my life. I love where my life is right now & the path I’m on. I wake up most days with so much energy & strength. I did add magnesium to my bedtime routine & that has helped immensely, magnesium is an amazing thing to add to your diet. I specifically drink “magnesium calm mind” & it really does help calm my mind before bed. I used to wake up annoyed to start the day, like here we go again. More bullshit, what’s going to hurt today, what’s going to limit me today, negativity vs positivity. Then I realized I was living my life in fear & holding back because of it. It’s very easy to get into this headspace when recovering from such a major surgery. You hear so many restrictions that it becomes overwhelming & anxious. You’re also learning where your strength is & the fear of pushing yourself because maybe you did & really felt it right after. Also, I can feel the wires that hold my sternum together. It makes Beau cringe & I think it's pretty insane to think about & feel. Sometimes it's weird to think what everything felt like before my surgery. Alignment is a beautiful thing, I have been processing emotions old & new non-stop. The more I release from my body emotionally, the better it feels physically. All throughout my recovery, people would tell me things like- “It doesn’t even seem like you just had open heart surgery.” I got that comment ALOT. I remember saying, “I know.” I’m so lucky the way my body has worked so hard to heal me & allow me to live my life. I know this isn’t everyone’s experience & to be transparent I had some very hard days or weeks throughout this time. I think what has helped me the most is how grateful I feel. I am grateful to be alive, that this was found, & I was able to recover at my own pace. Allowing myself to feel the sadness or frustration when it would arise helped me enjoy the little wins & good moments. If you’ve been following along during my journey, you know it has not been easy. It’s 100% the hardest thing I have ever had to do. Beau asked me the other month if this was the worst pain I had ever been in because he’s been with me through my medical journey the past 6 years & he’s seen so much. I told him yes, this pain was unlike anything I’d ever felt. One memory that stands out is the night of my surgery. They had to clean me & wipe me down. There I was sitting up because the moment I started to lay down, the more pressure I felt in my chest. The nurse began laying the bed all the way down as I was sobbing. Keep in mind this is the same day of my surgery. My sternum bone is broken in half & being held together by wires. My incision is as fresh as can be & they had to remove my ascending aorta & aortic root to replace it with the graft. I couldn’t keep anything down because my stomach was still “asleep” from when my heart stopped during the surgery. Oh yeah, don’t forget about the way pain medication barely touches me. So, as I laid flat crying I didn’t realize the worst part was yet to come. It was time for them to turn me on my side to get the body parts I’ve been laying on. Two nurses help during this. One of them pulls the sheet up that moves you & helps hold you on your side while the other nurse cleans. I am such a quiet & polite patient. I usually just cry to myself when I’m in pain but, I couldn’t hold it in. I began crying louder & saying “ow” as the pain & pressure got more intense. As I’m writing this, my body is tensing up remembering the way it felt. When they put me back on my back, I remember panting in pain. Then lucky me, they asked if I’m ready to flip to the other side. I immediately said, “No, I don’t want to.” But of course, I had to. The second time felt worse than the first time. I’m assuming because my chest was already in pain & turning again made it worse. If you saw the photo of me the day after surgery, you also saw the amount of wires I had all over me. However, what you don’t see are the 2 chest tubes I had in me right above my abdomen. Having those pulled out was probably the weirdest feeling ever. Then to have them tie the incision up right after, it was an experience. This description I gave was just a glimpse of what I went through in that hospital. The person I was when I walked in those doors for the first time, the person I was when I left Texas, & the person I am today are all VERY different people. I feel so confident about my story & my struggles I’ve gone through. I love to be an advocate & help others through their similar journey. I thought I would want to hide my scar so nobody could see it. But I love my scar, it’s my magic wand in life & let’s be honest.. it looks pretty badass. When I speak with doctors now, I know more of what I’m talking about. I’m not afraid to stand up for my body & get the answers it deserves. I’m empowered because at my cardiology appointment a month ago, she had no concerns for me. I can still live my life. It may not be a “normal” life but, it’s a life I love living. I get to take a step back & try to listen to my body more. Before I would ignore my body & push it more than I should’ve. I give my body so much credit & gratitude because it showed up for me & saved my life. Earlier this year my rheumatologist wanted me back on medication. A medication that takes 6 months to kick in, makes my hair fall out, could damage my eyes, etc. I refused because I’ve been on it several times before & I know what it’s like. I had to take this medication while being pregnant with the twins to help prevent a heart defect & I took it for 2 years on & off. I refused because I am so determined to heal my body holistically. This might sound irrational but, I don’t care what it sounds like. I canceled upcoming appointments with 2 different specialists & physical therapy they wanted me to do. I’m tired of feeling like a test subject or a medical mystery. Just to be clear, I’m keeping my PCP, cardiologist, & rheumatologist. I’m not completely irrational- yet. lol I don’t feel the need to see a hematologist or gastroenterologist because I’ve seen both before that took me down a rabbit hole of tests without answers. So, wish me luck as I explore my own health & dive deep into healing my body. I am excited about this new journey with my body. I am ready to take the reins of my life & lead it in a way that feels right. Healing sometimes feels like a full time job because it can be exhausting. At the same time it feels empowering. I love seeing blind spots, triggers, & situations then being curious of what it brings up for me. I have so much unconditional love in my heart for the world & compassion for people because we are all mirrors of each other. We all carry so much pain & I see you. My emotional capacity feels like it keeps getting bigger & bigger. I love the way it’s affecting my home. The connection I feel with my body & somatic movements I release with it makes me feel lighter. I can’t wait to see who I am on 11-3-2024, one year from my surgery. That woman already feels peacefully unstoppable. She’s going to change the world. If you are someone reading this that may be going through something similar, I encourage you to be patient with yourself through your experience. Everyone experiences things differently & be grateful for your body. Listen to your body & don’t be afraid to ask questions to fully understand your situation. If you need any advice or questions going into this, please feel free to reach out to me. I love talking to people on the other side. Again, I have so much love for everyone who’s been on this journey with me. The support & love is something I’ll never forget. Six months down & the rest of my life to go! Enjoying my life in slow motion and soaking up every moment I can with the people I love. 🌷
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I am about 4 months out from my open heart surgery, even though it feels like a lifetime. Being back to work has made me really miss being with the boys. That transition has been bittersweet. It's nice to be getting paid 100% again, but I would rather be spending time with my family. If anything, this has motivated me to continue working on the things I love on the side so I can be done with my job in the next few years. I love to write, come up with different ideas to create more connection, and I am training to be a sanga practitioner. I love the idea of diving deep to know myself more and taking what I have learned to hold space for others during their own processes. Helping others heal to find their own power and peace if pure magic!
My medical update is a constant rollercoaster, if you have been following along, you know this. I have had the most difficult few weeks. There is no sugar coating it. It's been a hard pill to swallow with my kids having the gene mutation. Then I found out that there is a family history of aortic aneurysms and heart problems. This is the part of my story that I have been holding onto for so long and I am ready to elaborate more. I will be recording my first episode on the "Vulnerable With Me" podcast which will be released in the next month or so. I know it has been a long time coming and the fear and resistance still exist but, the freedom that will follow is worth it. Last week Thursday I saw my doctor because earlier that week I woke up with numbness in my fingers. This wasn't your ordinary sensation of them falling asleep. On my left hand my middle finger felt like it was just radiating and vibrating for 3 hours. My ring and index finger had the same feeling but not as intense as the middle finger. On my right hand the ring and index finger were tingling for at least an hour. I am used to my limbs falling asleep often but, I never had it last more than half an hour. My doctor referred me to a neurologist and I am doing a nerve study/test next Wednesday. We are hoping that my nerves aren't damaged. I wasn't worried about that until last night when I was wiping the kitchen countertops with my right hand and suddenly the left hand began having the same feeling as it did previously. I immediately stopped and sat down. It went away after about 15 minutes and my blood pressure was normal. Yesterday I got the call from Primary Children's Hospital for my boys. It was heartbreaking to me to schedule all 3 of them for an echocardiogram. I was under the impression it would only be Christian. Unfortunately, with my medical history they wanted all the boys to get one done. To give you an idea, an echocardiogram is the ultrasound of your heart. This probably takes 30-40 minutes of you laying there and moving when they ask as they take photos of every part of your heart. When you lay on your left side, your left arm goes above your head. A little section is then removed right under your left rib area. The echo includes the 4 chambers, the aorta, it shows how the blood flows in & out, etc. It's a very detailed imaging procedure. My least favorite part if when they press down below your neck to see that area. Basically the whole left side of your upper body afterwards is covered in the gooey stuff. So to think about holding my babies down while this happens to them sound horrendous. The one thing I am happy about is they have the same cardiologist as me. She is familiar with my case, the gene mutation, and I won't have to re-explain anything to her. Plus, Beau & I really enjoyed my initial visit with her being thorough and sweet. My life feels overwhelming at this time between juggling all these appointments, work, home, family, etc. Next week the boys have their regular pediatrician appointment where we will have to update their doctor with all this new information. I have my rheumatology appointment in hopes they can figure out why I keep getting random cold sensations on my left shoulder/upper back and down my arm. Also, crossing my fingers that my blood work could come back normal for once. If you don't know, I have been seeing a rheumatologist since 2019 due to autoimmune issues. This appointment is normal to me but, this will be with a new provider since mine moved. My cardiologist personally wanted me to go here so I am excited to get a fresh perspective. Other interesting body sensations at 15.5 weeks is around my incision at the top, I have been having what I call mini cramps. Nothing severe, it feels minor. I have it in my notes to bring up at my next appointment. My arthritis in my knees have been very present. Oh yeah and my chest cramps came back! How could I forget that lol. It has only happened a few times so far but it feels the same way it did before the surgery. I joked with my doctor last Thursday & told him I bet you just light up when you see my name on your appointment list. He chuckled and told me that I am an interesting case but he doesn't mind. The doctor I have is the reason I was able to find my aneurysm, he helped save my life. Most doctors can get into such a habit of writing off your symptoms and blaming it on things like weight. Please go to a doctor who is willing to listen to you because you never know what's going on. I am having a chest CT done to make sure I don't have any new aneurysms and that things look good like my graft. If you don't remember, my gene mutation makes me susceptible to aneurysms in my body. My aorta and blood vessel walls are weaker than the normal human body. Like I have said, this is an on-going medical journey for my family and I. It has changed our lives and we are still learning how to navigate all of this. There isn't a book on what the next move should be or what to expect. I think the best thing at this point is to remember to live in the moment, even when it sucks. Feel the emotions that are valid and not shut down. My immediate response to things like this is for me to disassociate myself from the situation. Once I disassociate, I hop into my masculine energy to handle things. However, I don't think this is a situation that needs to be handled. What feels right to me is feeling this situation and how it has affected my family and I. Some days I am positive and motivated to get things done. Some days I am crying or feeling sad with what's going on. We don't need to be stuck in one emotion or mood, it can be a flow of different things. Another thing that has helped me release and get out of my head is writing. Writing it all out about how I am feeling and creating art from a shitty situation. I love being vulnerable with me. Right when I thought I was done with the updates, I’m back with more! Grab the box of tissues, I would offer mine if I didn’t run out. (Terrible humor to help me cope lol.) Since week 10 I feel like I am on this emotional rollercoaster but, not fully in a bad way. Looking back, I have been feeling overwhelmed with so many different opportunities. They have all been beautiful and it has made me put things into perspective of what is most important to me right now. Taking it a step further than knowing what’s important is honoring those things and staying true to myself even if that means removing myself from certain situations or conversations.
I’ve had days where I randomly cry or the babies have been too much to handle when my mom left back to Samoa. I’ve had days where I have been confused with my recovery as pains or pressures I thought were long gone came back. At the moment it felt discouraging because going backwards on something major like this is not where I want to be. I have had the most difficult time with insurance figuring out cardiac rehab for me and coverage, so I gave up on pursuing that. During my time off work I have only been getting paid 60% and nobody informed me as I transitioned to “long term disability” it switched to monthly. The rep I had was terrible at communication and as I was expecting pay on Jan 17th for Dec 17-Jan17, it didn’t come. He needed additional office notes but didn’t express that. So, I had to reach out to the doctors office and send it to him, then I was finally paid out on Jan 30th. Receiving benefits from my job should be the last thing on my mind but, it’s been a constant nightmare with them. I learned the more I go out or do things for myself, the happier I am. Transitioning from not being able to do much of anything back into your daily life is hard. There are times where it’s confusing because you get so used to your recovery that you almost forget what it’s like. The first day I was able to drive, it was beautiful until I hit a major snow storm going 5mph for a while. Last Saturday, I decided to chop my hair off because I couldn’t take the hair loss. It is still falling out but, I am noticing less now that my hair isn’t long. When I posted my last update I did think that was it but this really is a lifelong journey. Heart disease does not suddenly stop when you get the surgery, it’s an adjustment. The resistance I feel to writing this paragraph is so heavy. I know that it’s time to write this out and it’s a part of my medical journey and story but, as a mother I would rather go through all of this over and over again than to pass it on. As I have shared my deepest fear before is passing this gene mutation (ACTA2) onto my kids, my precious boys. That fear has come true today as I saw the results were in, I messaged the doctor immediately. They called me back and told me that they need to schedule a call to go over it with the genetic counselor. Mother instinct is true because in that moment, I knew. The earliest appointment was Thursday and I asked to be on a cancellation list because I needed to know asap. The anxiety was eating me alive as I was on the verge of crying during work. I began to have system issues and it turned into hours long of me not being able to work. Then I got a call and in that moment it felt like the universe lined up for me to be present. The doctor asked if I was available at this time because he had a moment to go over things. I said yes and he told me that all 3 of my boys came back positive for the ACTA2 gene mutation. I asked if we could conference my husband before he goes into any more detail and honestly I knew I wouldn’t have the emotional capacity to tell him myself. He explained that he will be sending in the referrals to Primary Children’s hospital here in SLC, UT and since Christian is 10 years old, they would want to do an echocardiogram on him (ultrasound of the heart). In the meantime we just regularly monitor them. The twins will get screened when they are about 4-5 but will still be seen by the pediatric cardiologist. Then he says something that I didn’t even think about. He mentions that when the boys are ready to have kids in the future they would need to discuss things with a genetic counselor because their kids will also have a 50% chance of having it. The nightmare of not only passing something onto your kids but your future grandkids and so on, wow. So how do I take that as the mother who has passed on a life long and life threatening gene onto my children? It feels shitty. There is no sugar coating that. Do I know it’s not necessarily my fault? Yes. That doesn’t change the fact that it still feels like my fault since it’s my DNA that has given this to my boys. After finding out, how do I look at them in their innocent sweet eyes? How do I not feel the heaviness of this burden so I can learn to live with what is right now? I don’t know. As I am writing this all I can imagine is their love. Their smiles, their screams, their laughs, their little feet running back and forth, their hugs that comfort me when everything feels like it’s falling, or the simple I love you’s. What I will say is things happen in mysterious ways. I could ask the infamous question of “why me?” Which isn’t a shameful question because I would like to know. Then I reflect on the impact my story has had on others the past few months and think why not me? Why would I not continue to share this journey and give hope to others asking the same question. Or others feeling hopeless in their journey or their own genetics. There is still a beautiful life to live with heart disease or after open heart surgery. I see you and I know what you are feeling, I have and still feel it. Just because somebody's story looks better than yours doesn’t mean it is. This is my chance to practice what I preach. I keep reminding myself that I get to live life in slow motion. Now, I can show my kids what it’s like to live life in slow motion and to live grateful for every moment. I know there have been many others who were not lucky enough to find this early on and aren’t here to tell their story. Why me? Why did I find my aortic root aneurysm at the perfect moment? Why do I get to live? I’ll tell you why. I am here to change the outlook on ACTA2 and heart disease. I am here to tell anyone struggling with this that they are not alone. I am here because my story is still being written and nobody can tell it better than I can. I am here to bring awareness to everything I have experienced and to show you what’s possible. I am here to be a living miracle because they do exist. Look at you, you are here reading this story because you care and I see you. How coincidental that the day I am having my call to be featured on a medical blog highlighting women’s health and heart disease is the same day I got this news about the kids. I have this opportunity to continue advocating and spreading awareness to the NUMBER ONE killer for women. I have this opportunity to show that you don’t have to be another statistic of depression after having open heart surgery. I get to share all of the hard times so others can relate because I have gone through this process. As women and especially moms we tend to ignore our bodies but, take this as your sign to listen to your body. What is hurting? What does it need? Are you aware of your own body sensations? We cannot take care of others until we take care of ourselves. Accept support, being alone is a choice and being surrounded by loved ones who truly want to be there for you is a choice. I know what it’s like to be alone because I chose that path for years. I could not have gone through my open heart surgery and the journey it still has me on without the love and support from family, friends, and strangers. For those reading this that have passed something onto your kids, take a deep breath. Take another one. Now, think about yourself and your kids. Will you choose to live in fear or will you choose to live in gratitude? Are you willing to show them and yourself the magic of living life in slow motion? Take your time to answer, there is no rush. Feel all the emotions you feel and remember the power of love is there when you need it. As I have been reaching 10 weeks post op, I have been feeling more optimistic. This past Wednesday I was able to drive for the first time since October. Of course, I hit a snow storm that was insane and exhausting. Another thing you don't realize is how much energy you use to drive. Your legs are in movement and so are your arms holding the steering wheel and making turns. 10 weeks feels beautiful, which is a change from the discouraging feelings I have felt throughout this recovery. On New Year's Eve, I asked myself a question that really put things into perspective for me. Am I scared to die or scared to live?
I realized that I was both scared to die and scared to live. I was scared to live because of everything I have learned previously about my health. Not being able to do certain things an ultimately living with caution. I found myself always feeling concerned with my heart rate, blood pressure, and everything. I noticed the more pressure I put on those things, the more they became worrisome. I was scared to live because the thought of missing out on my boys growing up is the worst thing I could imagine. I want to live because I have so much to live for. I have been given two second chances at life in the past year and a half. I keep reminding everyone how precious life is and the present really is a gift to live in. I have been keeping myself busy between officially publishing my book on Christmas Eve to getting the ball rolling on my new podcast. I feel inspired by life that I have the opportunity to do these things. The power and peace that I have found through this whole journey is something I have loved sharing with others. I enjoy the connections I have made and the people I had the chance to help during the past 10 weeks. This has taught me that we are ALL going through struggles. How can we relate to others if we don't share? We are stuck in this mindset that nobody else could understand what you are going through when in reality there are many others like you. We don't have to feel suffocated by our trauma or alone anymore. Recovery has been better, I have been starting to trust my body and do things more. The last of my incision scabs fell off yesterday and that's a huge deal. Can you believe it took 10 weeks for the incision to fully scab and heal? The body is truly amazing. I moved my bed back to normal so I am not sleeping on the incline anymore. There are some things I have tried and were reminded not to. I used my arms to get up and sit on the counter because I forgot. It wasn't terrible but, it wasn't pleasant. While I am okay to hold the babies now, I can't hold Kenai for too long or i get pretty winded. There are just so many things with open heart surgery and recovery that are unexpected and its constant learning. That's why I believe that you could never fully prepare for this. However, there are things that definitely help. My next post on here I will be posting a link to an Amazon list I made of what I felt were essentials for me. I will post advice about anybody that will be going through this if they need something to lean on or support them. Thank you for supporting this once in a lifetime journey of mine! 6 weeks post op:
To be honest, recovery has felt stagnant and exhausting. My upper body is still as sore as it was 2 weeks ago. One day, I just cried because after weeks of feeling sore and limited it gets sad. So I took a day to just feel that and remind myself that everybody heals differently. I know that with my autoimmune issues it makes things more difficult to heal. What’s frustrating is I don’t fully know what’s normal/not normal so I lean on google and medical information/studies (yes, I know reading things can be scary the internet but, I'm reading from actual hospital sites and reliable sources.). I’m grateful for my very few connections I have that I can lean on as well. Open heart surgery is not a common thing to go through especially this young so relating to others is hard. I have been excited to reach 6 weeks because just like at 4 weeks they said it was supposed to get better. At 4 weeks, I didn’t feel that way and today at 6 weeks I just feel tired. A week and a half ago my scab at the top of my incision fell off and I saw the inside deeper than I’d like. I told a friend I bet I could fit a bean in there. When I saw the surgeon out here that referred me to Texas he said everything looked great which was nice to know. I just have to wear gauze until the scab grows back. So everyday I’ve been wearing gauze over it and it looked great this morning! (: On the bright side, I’m starting to do a little more. I can fold laundry again, cook simple meals on the stove, reach a little more, and I’m grateful to be able to do those little things. To finally feel progress feels beautiful when things can feel helpless. Healing physically has always been a struggle for me. The main thing during recovery is listening to my body. I know when I need to sit down, lay down, or just breathe. I can feel the open communication and the trust my body has in me. Let’s be honest, open heart surgery is brutal. Not only are you healing your heart but, you are healing you lungs, the muscles, the nerves, your sternum bone that was cut in half, etc. My heart breaks when my babies cry and I can't pick them up or simply soothe them as a mother should. My babies don't understand why they come to mommy crying and I can't comfort them. Working on my poetry book has kept me busy and it's been a blessing to be doing something that I love during all of this. While I have been going through one of the hardest chapters in my life, this has brought me fulfillment. 7 weeks post op: I wrote my 6 weeks post op update last week but, I never posted it. It just didn't feel right for some reason. Then I had my first cardiology appointment (finally) on December 19th and it made sense. Beau and I went to this appointment thinking they're going to tell me my incision looks great and it would be fairly quick. I was called back at 2:30pm because they were on time with their schedule and I thought, wow even better. We go back the MA checked my blood pressure on both arms and was thrilled to see they were the same exact number then she said it was rare, there goes that word again. She told me that this doesn't really happen and my blood pressure was on the low side, which it always is. My EKG was normal, and everything looked great all we we had to do was wait for the doctor. The doctor came in and immediately her energy felt compassionate with pure intentions. She started going through my medical history and asking me a ton of questions. The department I'm with is under the Adult Congenital Heart Disease Program at the University of Utah hospital. She confirmed that I don't have Ehlers-Danlos syndrome (EDS), I just have my gene mutation. There are pro's and con's to this because there are more studies and preventative measures for EDS than ACTA2 (gene mutation) since more people have it. Usually, people with ACTA2 will develop aneurysms if they deal with high blood pressure or faster heart rates. When she said this my body flooded with fear, I asked her why did I have one if I deal with the opposite issue, low blood pressure. She was puzzled and honest, saying she didn't know because my case is rare. She was concerned that mine had grown from 4.5cm to 5.2cm diameter in a few months with little activity. Knowing all of the above, I asked her what can I do to prevent myself from having aneurysms in the future. Her answer was that there was not much I could do other than not lift heavy things, monitor my heart rate, and just listen to my body. She said the good thing is the aortic root and ascending aorta are the most life threatening and I had mine replaced. The medication that someone in my condition would normally take, I can't take because it's meant to lower the heart rate and blood pressure. I already have episodes of being dizzy and sometimes everything feels like it goes dark and I have to hold on to something so I don't fall over. I asked if there was any dietary things I can do and there aren't because my heart is healthy and my problem is having weak blood vessels. Another thing she mentioned is that people that have torn a blood vessel say they know when it happens and the pain won't go away, that's my sign to rush to the hospital. Very reassuring right? I asked her when will the soreness go away because every time I am leaned back or get up from my bed that's inclined it feels like all this pressure rushes to my incision and feels heavy. Her face was puzzled as she asked me to explain it again. After that, I explained to her that I tried to lay on my side for the first time 2 days prior and 10 minutes in my breathing changed so I moved on my back. Well, my whole left side began cramping and I thought it was my lung, maybe I put too much weight on it too soon. It hurt to breathe and I thought I was going to have to go to the emergency room. I sat up and just tried to relax until it finally calmed down. The next day I could still feel the cramping here and there but, not as bad. She said those were not normal things and she hasn't heard of anything like that from other patients and I need to have an echo (ultrasound of heart). She scheduled me on their next available which is today at 4pm and I am nervous. We are hoping its not my pericardium and that everything looked good. Lastly, she is recommending me for cardiac rehab even though I am at 7 weeks post op my healing has been different and I would benefit from it. She told me that I'll probably be the youngest one in there with nothing but old people. I told her, it's fine I'm used to it because apparently those are my people. I have heard that I have an old soul but, apparently I have an old body to go along with it. The only thing I want to know is how many more health problems do I need to qualify for my senior citizen discounts and handicap sign! (lol) After the appointment was over, Beau said we have been in there for 2 hours it was 4:32pm. It felt like the appointment we had when we found out we were having twins, thinking it was all simple then SURPRISE! I cried majority of the car ride as Beau drove around. What saddens me as a mother is when they mention that it could have been my pregnancy that made it expand because scientifically I was not supposed to survive that. A placental abruption happening with Kenai still in my stomach, losing 2.5 liters of blood in the O.R,. then being in recovery for about 3 hours as they pushed down on my stomach every 15 minutes and I was still bleeding until they manually went in me to get the blood clot out. Even though this was traumatic, seeing and holding them was magical. I worried that associating another trauma would ruin this moment for me and I felt protective honestly. As I feel into it, nothing could ruin the memories I have holding both babies on my chest and seeing them. I understand the concern and validation to know what caused this other than my gene mutation. I processed in the car ride that being rare and not knowing clear guidelines to protect or save my own life sucks. The overwhelming feeling of pure fear or not being here for myself or my family fucking sucks. Not being able to take the medication that would normally help me because it would worsen another problem I have sucks. All of the news I got at this appointment mostly all sucked. While I cried out of fear, helplessness, sadness, and frustration I could feel my nervous system freaking out with me. I began trying to breathe to relax but then quickly my lungs reminded me I can't take deep breaths. This made me feel so upset with my body and then I felt myself simply breathe. How could I be upset with my body when here it is breathing for me, I am alive because it has not given up on me. After my that question this line from a poem I wrote came into my mind, "The universe still wants me to exist." I could feel it in my heart and began to I trace each tip of my fingers to my palm and said, "The universe still wants me to exist, my family still needs me to exist, I still want to exist, I still need to exist, I exist." I could feel this calming me I felt pure gratitude that after all of this, I am still meant to exist. There is so much I have to live for that, life and simply living are my motivation. I am no longer wasting my time doubting myself because I don't know how much time I have left here. I honor the reality in that but, I honor the beauty that I am here today writing this update. This week I submitted my book "Vulnerable With Me" to be approved. This awakening I have had through this experience is making me live my dreams and realize I am my own dream. The last section in my book is titled "Power and Peace." Earlier this year I decided I was done being powerful, I just wanted to peaceful. I felt resentment towards the words strong and powerful because I was tired of living life on hard mode. Once I found my feminine energy I had thought was weak, I fell in love with it. I began to go with the flow, cry to water my soul, I felt peaceful, and fell deep into compassion. To be completely honest, I was never a compassionate or empathetic person. It was always suck it up, figure it out, complaining is a waste of time, and problem solving 24/7. Boy, did I embody toxic masculinity because if you know me, you know I can be very competitive. Letting go of my own expectations and redefining strong has changed my life. Having the trust in both my masculine and feminine energy is beautiful, I don't have to be masculine all the time and trust that when it's needed I can show up. You can be powerful and peaceful, you can find your balance and embody whatever energy you desire. Follow your intuition and make the conscious effort to decide how YOU want to show up for YOU. I could spend my time down in the dumps about all of this or I can spend my time finding the joy and living! It's a choice and only we can make that choice for ourselves. As a reminder, none of us know how much time we have left on this Earth. Spread love and kindness, live your life the way you truly want. What are you doing with the time you have left? What do you want to accomplish? What is stopping you from doing that? What do you need from yourself to get there? I would genuinely like to know these answers if you would like to share! ♡ 6 weeks post op photo. vs. 7 week post op photo It's hard to believe it’s been 4 weeks since my open heart surgery. Part of me feels like it’s moved slowly & the other part of me feels like it has moved fast. When they tell you it takes 8-12 weeks to recover, they mean it. Every week has felt different in terms of recovery. They have had their own pain, challenges, & empowerment. I have lost 15 pounds since my surgery unintentionally and my appetite is not fully back yet. Since my last update 2 weeks post op, I really thought that I was on this uphill of getting back to normal but, I was wrong. While my incision was healing & feeling better daily, I was not prepared to experience nerve pain. Due to my sternum reconnecting & healing it can cause nerve pain. It feels like arthritis x10 & it would go from my neck, shoulders, arms, fingers, etc. It’s one of the most painful things I’ve had to experience. During these episodes I cannot even speak or comprehend what would help. I explain it as 10-15 minutes of complete hell & then the worst part of the pain is over. If you touched the areas, you would feel how cold it became. Sleep is still it’s own challenge. My chest area is still slightly swollen & at times it feels heavy. When I lay down I can feel pressure on my chest as I just try to breathe until it feels fine. I begin to fall asleep okay but, the moment I wake up if it’s 4am or 6am I can’t go back to bed. When I get up from laying down for a while, I use the heart pillow to support my chest. I have to maneuver to the side of the bed, get my legs off, then brace myself to get up. It sounds easy but when you don’t have much access to your upper body strength for help, it’s very tiring. Then there is the transition to actually stand up & during this time I feel pressure around the incision. The top of the incision you can tell was stretched well during surgery because it’s been taking the longest to heal. My 2 chest tube incisions are healing well & haven’t had any issues since I switched bras. The recovery bras I had would line up with my chest incisions perfectly to irritate them & sometimes make them bleed a bit. You’re probably thinking to yourself, “Then don’t wear a bra, duh.” But just imagine your chest is cut open & boobs go to the side when you lay down stretching your incision open. Then imagine that your chest is weak/sore & then that same chest is supporting your boobs without a bra. It’s all a learning experience & everyone’s body heals differently. When I am in the car I have a cushion on the seatbelt & my heart pillow under it to help. Any hard turns or bumpy roads I can feel it all in my chest. I have motion sickness in the car now & have to use motion ease to help or roll the window down to feel the air. Another thing has been asking for a ride if I need or want to go anywhere, I feel like a teenager again. The best part about about feeling like a teenager again is having my mom here with me who will make me food. Anytime she sees me doing anything that looks straining she comes to take over. During recovery I have to constantly ask for help. Luckily, I started practicing that this year or things would be looking different. I still hate constantly asking for things but everyone understands and encourages it. Simple things like reaching for a glass or physically pouring water because the brita pitcher is too full making it too heavy for me to lift. Reaching things in the pantry I would normally have no issues with. I can barely reach my clothes on the top rack in the closet, it’s a maneuver technique & I just leave the hangers on the bottom rack. So many simple things I used to take for granted are now the things I need the most help with. I’m grateful for my family helping me because they never make me feel like a burden. What do I miss the most? Holding, cuddling, hugging my loved ones normally. If you’ve seen me during this time & we hugged you experienced my awkward side hug. Or you’ve experienced the hug where one arm is over my chest to protect my incision & keep the distance even more awkward hug. Not being able to help with my babies, pick them up, or just letting them lay on me has been hard. Our family is heavy on the physical touch & now that I don’t have that, sometimes I feel like an outsider. I miss being held by my husband or having random hugs throughout the day. I will never take those moments for granted again. All of these things I’m talking about & reflecting on really puts things into perspective. Even though I can’t physically do much right now, it’s made me focus on my dreams & allowing my ideas to take over. I’ve never invested so much time & energy into myself. This whole experience has been so heart opening for me, literally. My heart is filled with confidence in the path I’m going that if there’s a shred of doubt that comes up it’s flooded out with all the reasons why. I have never felt in such alignment with all the versions of myself, not just my higher self. Before having open heart surgery we were scared of the unknown. After having open heart surgery I have trust & excitement for the unknown. I feel badass & unstoppable, ready to take on anything. I can’t wait to publish my book, turn 30, & unleash all the projects I have been working on. At 4 weeks post op, I still have discomfort & am healing. At 4 weeks post op, I am so damn proud of myself & can’t wait to see what unravels at 6 weeks. My journey has been a mix of everything, some moments are hard & I take time to feel them. Then I remember how lucky I am & gratitude takes over to show me the bigger picture. The last thing I want to mention is that our health & listening to our body is SO important. I knew this was all serious and everything going on was urgent. I didn't realize how close to death I was. My aortic root a few weeks before my surgery was at 5.2cm diameter. With my gene mutation it's recommended that it be replaced once it is greater than 4.5cm because my walls are weaker. At any point before my surgery I could have had a dissection, which would have caused me to bleed internally and die. Although, I am grateful it's still scary to know this information and it makes me want to prioritize my health more. Never again will I push my body past its limits, I am human, I am not a machine. Sometimes I feel like a cat because if you know my story, you know that the universe still wants me on this Earth. The universe has given me the grace to learn from these challenges & share my insight with all of you. Please, listen to your body and ask it what it needs. Close your eyes & feel how lucky you are to be alive. You are important & you deserve to be loved by YOU. Tuesday, I had an appointment with 2 genetic counselors to talk about my rare gene mutation & its risks. We spoke about testing the kids to know if they have it & what that would look like for them. If they do have it we can be preventative & an aortic aneurysm usually doesn’t present itself until your 20’s with this mutation. They asked me what my cardiac history was & I told them I just saw the cardiologist for the first time on August 23, 2023 when he diagnosed me. They were surprised that I didn’t have symptoms earlier & were concerned with the rapid growth. I explained that I never dealt with heart issues & within 10 weeks of my diagnosis I underwent open heart surgery.
When I look back & reminisce on the time that has passed in this window of chaos, it’s wild. It’s been 12 weeks since I found out I had an aortic root aneurysm, 6 weeks since I found out I needed to have the surgery asap, & 2 weeks since my surgery. It sounds like it all moved so fast & on the other hand it felt like slow motion. My life constantly changed within weeks & here I am on the other side looking back. During this time, I feel as if I have felt every emotion possible & I’m here stronger than ever still recovering. During this time, I have felt the most love & kindness & I’m here more grateful than ever. Living my life with gratitude was the shift I never knew I needed. Everyday I'm thankful for this experience that has changed & challenged me in all the ways I needed. Life is meant to change, challenge, & reveal the best versions of yourself if you allow it. I barely had control over anything that was going on, I just had to go with the flow & trust the process. If I was stubborn & didn’t have this surgery or if I waited, I would have tore the aorta before having the chance to fix it or it would have ruptured & I could’ve died by internal bleeding. Both are emergency life threatening situations that I was terrified of leading up to the surgery. They emphasized taking it easy because my walls are weaker, all it would have taken was that one stretch & it would have been over. I tried not to allow myself to live in fear but, when it’s your life, it’s hard. I was in the middle of fear & denial at first. I would ask, “Is this really happening to me?” I used to think being rare was such a great thing & now I was feeling like I hate it. It wasn’t until I spent days crying & allowing myself to feel the emotions that I started seeing the other side. Sometimes if we do not feel our emotions we can be stuck in them & can’t see “the light at the end of the tunnel.” What I saw was me after surgery with a badass scar, I saw myself resting, & I saw myself sharing my story. It’s not often that you get to hear a perspective of a young 29 year old mother having an emergency open heart surgery & in another state, Texas. I always have a hope that anything I share one person can relate, it helps one person, or makes one person feel less alone. I not only wanted to share my story, I wanted to embrace this experience. Try to show the journey from beginning, middle, to end. Be completely transparent & shed light on what I have learned from this. I have learned that we take our bodies for granted everyday. I have been able to witness my heart in action during an echocardiogram & feel grateful that even though my aorta had an aneurysm my heart was still working hard for me. I learned that I have taken life for granted & have spent most of it living for others, I’ll never live that way again. I learned that love is everything & kindness spreads fast. I learned that even when I was losing hope, I was strong enough to make it through. I remember being in the hospital being in pain & telling myself this is the worst it will be, tomorrow it’ll be easier if we can just get through today. I told myself that 3 days in a row & on the third day my glimmer of hope was possibly being discharged the next day. When I got up Wednesday morning I was exhausted because I wasn’t sleeping well in the hospital. I would always wake up hourly trying to get comfortable or just couldn’t go back to sleep. When your chest is cut open & you’re attached to tubes, wires, & IV’s it’s not easy falling asleep. The hospital bed was terrible & your only option is being on your back which at times feels heavy if I’m not inclined. I remember when they had to flip me to my sides hours after surgery & the pain I felt was horrendous. The pressure & movement from it all just sucked and all I could do was hope it was over soon. I’m not a patient who screams but I was quietly crying & saying “ow” over & over again. All of these things, I have been randomly remembering & am so glad that the worst of it is over. With this rare gene mutation & surgery, I was approached my a medical researcher asking if I would want to volunteer for their studies. There is not much information out there about my condition because less that 1,000 people in the US have this. She told me it would really help people in the future & allow them to better understand things. They asked for blood tests, results, my aorta that was removed, almost everything. I eagerly agreed to all of it, what a blessing that this experience that I survived will help someone in the future. What is my willingness to participate helps my kids if they have this, that would be amazing. It could lead them to answers they have been working on for years & all I have to do is share my medical information? If they find anything, they will update me but until then.. I like being rare again. I guess it’s not that bad when you get to help other people who are also rare. I have learned to enjoy the fact that I get to be very relatable to so many people. I promise if you’re reading this, we have something in common. I want to end with my feelings when I first heard that I had a gene mutation. I had 2 thoughts, "Wow, people are going to think I'm weird." & "Well, I'm basically apart of the X-men!" The first thought I immediately stopped caring about since I have been weird my whole life & it's who I am. The second thought made me feel unique because how many people can say they have a gene mutation? My favorite mutant is Mystique, I always admired her confidence in her own skin & the fact that she must have so much trust in her body to shape shift on command. I believe that if we embrace what makes us different, that is where the beauty is. What makes you stand out? What makes you relatable? What makes you, YOU? **Trigger Warning, experience details & shared photos below**
YOU GUYS, nothing can fully prepare you for open heart surgery. You have no idea how hard it is until you’re in it & you’re feeling everything. This was by far the hardest thing I have gone through & a few days I struggled more than others. Trying to sleep was the hardest thing because it’s so uncomfortable & it becomes frustrating. However, to go into surgery with the love & support that came from all of you.. wow. Nothing could have prepared me for that energy that was in the air. I was in awe to see everyone’s red when Beau showed me, as it took a while for me to be coherent. When I woke up from everything, I was gagging with the breathing ventilators down my throat. I remember how it felt & everyone moving fast around me. My hands were strapped down to the bed to prevent me or any patient from trying anything. So I immediately felt insane but, I still tried to use my hands to sign to the doctors & communicate with them to take it out. The physical therapist told that I couldn’t have it out until tomorrow. So, I did what any other crazy person would do & I began trying to move it to find a more comfortable spot. Yes, I know this was not a great idea but until you are in this situation you don't know what it's like. I heard someone tell Beau who had to see me like this that “she won’t remember any of this.” But, I did.. it’s burned in my memory & I remember Beau saying “I’m sorry, I don’t know what to do.” He had to watch me struggle there & silently cry. When we talked about it, he thought I didn’t know any of that happened like they told him I wouldn’t. About 15 minutes after Beau left, they told me that if they took this out I would have to breathe on my own & I felt I could. Luckily the doctor trusted me enough to say if she wants it out & knows what’s going on, take it out. After that, I felt SO much better breathing on my own without all the tubes down my throat. They don’t know the trust I have created with my body & she showed tf up. During this time, I got to feel how lucky I was that I’m the patient in the ICU recovery room joking with the nurses while others were still on breathing machines. It was heartbreaking to see others in the state that they were in but, I got to see their families come & go in the scheduled 30 minutes 6 times a day & show their love. I got to see Beau & Karlene during that time, give them updates, talk, laugh, & hear about everyones kind vibes. Then hear my personal nurse, Karlene, tell me I need to start doing this & that to get better. lol They motivated me because 3 hours in a 24 hour day is not enough to see our loved ones while we recover. When everyone left after the 30 minutes was up I watched everything happen behind the scenes, the nurses & doctors working their assess off to care for each patient. After sitting up, I asked for apple juice & gingerale because gingerale saved my life last time once before lol. I was feeling great until I wasn’t & was taken off liquids due vomiting because my stomach was not awake yet. I didn't fully understand the part of your surgery where your body is literally asleep & they wait for it to cool down before operating. I tried not to know too much going into this because I didn't want my nerves to freak me out. Then as your body starts to breathe & pump blood on its own again it takes time for things to "wake up." My nurse night one was my saving grace through this experience. I could tell she loved her job, caring for her patients, & I hope when I nominate her she wins an award. To reflect back to think that hours after waking up from surgery I asked my nurse for a pen & paper is wildly beautiful. I had all these thoughts that needed to be released. I wrote an idea that I’ll elaborate on in a separate post & I wasn’t even planning to write a poem. Suddenly, all these words kept flowing out of my heart & onto the paper & I loved it. It’s not just my journey, it’s our journey. We’re all going through this life together & how wonderful we get to show up for one another & be there when it matters most. I spent about 3 days in the recovery ICU, right next to the O.R. When they had a bed available in ICU I was moved there for less than a day. Then after that I got my own room which was less hectic. Being cooped up in the hospital can be ALOT. The pain would take turns going from okay, to severe, to FML. I struggle with pain meds, it’s always hard to find something that works for me. Fentanyl didn’t even touch me, but they found something that worked. I will say that even though the pain went away, I felt delusional & nauseous. All side effects from this one drug, I'm not sure if it was worth it with how deranged I was feeling & being so out of it. I couldn’t even look at my phone it looked blurry & messed with me. If Beau left, it took all my strength to focus & text him for something like water or gatorade when he left it with me. So I stayed off of it until I was discharged Wednesday morning. As you all know, Beau did an amazing job keeping everyone updated. I felt that was very important as you all have been with me on this journey & deserved to know. Now, I’m in the hotel room staying on top of regular pain meds & ready to go back home next week to see my boys. Being away from them has made me miss them SO much & I know Christian will feel better seeing my in person feeling good. He has been over wearing the "in hearts we live forever shirt" that we got matching for the day of surgery. As I'm in recovery living in slow motion, I notice the little things I take for granted. How much strength movement it takes to brush my teeth, open doors, open a bottle of water, changing clothes, thoughtful movements, etc. But feeling & seeing my own progress is pretty damn cool. My incision has been healing very nicely & my scar will be my reminder of how powerful my body is & how much love I have in my life.Thank you for reading my story, sharing my story, & being with me during my story. I love you. Nobody could fully prepare for the hardest moments in your life. The best thing I can do is to honor the situation & my emotions that come with it. This is exactly where I’m meant to be & the universe has aligned for me. I could be angry that this is happening to me or I could embrace this. My super power is my ability to get through ANYTHING thrown my way. All my life I’ve faced challenges that you couldn’t imagine & against all odds I trust myself to pull through. One thing about me is that I know my power in this & I understand that I don't have to show up with that power everyday to prove anything because I know what I'm capable of.
Earlier this year I began to struggle with the word “strong.” I felt like it was a word used to brainwash me to not honor myself & push myself way past my limits. I believed being strong was taking on more than I can handle & ignoring my body, heart, & spirit. My mind took over & told me that if I couldn’t do all things fully then I was weak. If I cleaned the whole kitchen & didn’t have time/energy to clean the microwave, it wasn’t enough. It was either I give EVERYTHING 100% or why try at all. So, that’s what I did.. I did everything at 100% & never gave myself grace to do anything less. I convinced myself that this was being strong & I needed to just suck it up. What does “strong” mean to me now? Strong means the ability to feel into my needs/desires & honor them. Strong is the courage to stand up for myself & setting boundaries. Strong is allowing others to help or comfort me when I can’t do it on my own. Strong is accepting what is & being able to take deep breaths in stressful situations to calm my own nervous system. Strong is knowing when to rest and actually resting. Strong is who I am & what I embody because I get to redefine what words mean to me. The best things in life come when you least expect it. Maybe if you’re reading this you’re thinking, wow she must be delusional lol. But what has the experience of going into open heart surgery after just 2 months of being diagnosed given me? It’s shown me that life can go as fast or as slow as we want it. The more I flow with what’s meant for me, the more I align with my higher self. This is the most I have ever cried in my life & this is the most love I have ever felt in my life. Two things can be true at one time & that’s what life has shown me. The overwhelming amount of love & support that I have felt during this time is the most beautiful feeling. To be loved by all of you is a treasure that I don’t take for granted. The hardest thing for me during this experience is not open heart surgery. It’s seeing the people that I love worry, cry, & feel sadness over me. I would never discourage anyone to not feel their emotions or tell them they need to be strong for me. This is my chance to be strong for myself & now that I have redefined the word "strong" I'm ready for this moment. Love will get me through this & love will still be there when this is done. I am fighting for myself, my family, my friends, my community, & anyone who has been kind enough to reach out, donate, or just read my story. With all my love, thank you because I couldn’t go through this alone. This is the hardest update that I have written so far. Monday was a full day of calls, planning, booking, and getting things situated for Texas. On Tuesday I decided that I get to be sad & feel all the emotions to process what will be happening in the next week. Even though I believe that this is in alignment with where I am in my life, it does not take away from the pain, tears, & anxiety that is wrapped in this. I chose to take a break from the positivity & just be within my true emotions that are valid. I do want to mention how grateful I am to all the healing I have done this year that I am able to give this to myself. If this was me one year ago I would have been upset with myself for not staying positive and I probably would have been numb throughout this whole process. We will be heading to Texas on Monday, 10/30/23, because I have a few appointments before the actual surgery. My open heart surgery will take place on Friday morning, 11/3/23. Before the open heart surgery, I have a procedure called a heart catheterization on Thursday, I attached a link to explain this. Things began to feel very real Monday night knowing how fast this is approaching. It saddens me to miss Halloween with my boys & family. However, my hope is to be home for Thanksgiving & Christian's 10th birthday on November 24th! As I began to do laundry & read tips on post recovery I realized I need new clothes to heal in. They don't want you lifting your arms, so I have been making a list with post-recovery essentials. You don't realize the extra expense of those things until you learn or experience it. I didn't even think about what the weather was like until last night. I guess I could say that part of me is still in shock that this is even happening. Sometimes its hard to plan so many things at once when you are still processing something as major as this. While I am here writing about my feelings, there are other feelings involved. Monday night while Christian & I were playing sequence I asked Christian if he told his friends his mom was going to have heart surgery. He said no, when I asked him why he told me that he didn't want to talk about it with anyone because he didn't want to cry at school. Of course as a mother, that breaks my heart. I told him it was okay to be sad & cry but, he deflected the subject. Later that night his dad asked him & he expressed how scared he was of the worst case scenario. This is a fear that no child should have to live with. I talked with his teacher today & she told me that he has been sad at school but is still motivated. I cannot wait until I am recovering from surgery so that I can call my son & tell him that he no longer needs to worry. When I told my brother the surgery update, he asked to come over & I'm happy that he did. The support & love that he & my sister in law gave me Monday was just what I needed. My sister in law offered to watch Christian & do school packets with him while I am away. The twins will be with Beau's parents until my mom & dad fly into town around 11/10/23 to help out with the kids. How amazing is it that as I am in Texas dealing with my health, our families have come together & I am not worried about my boys. Today is Wednesday & it feels like the longest week of my life. Along with chest pain, numbness in my limbs from lack of blood flow, & barely getting sleep I am emotionally, mentally, & physically exhausted. Part of me wishes I could turn off my phone & just take a break so that I can just be & hear my own thoughts. I feel my smooth chest where I will soon have a large scar & I cried on Monday night thinking about how it will never feel like that again. As I write this I am reminded of my stretch marks where a smooth flat stomach used to be & how grateful I am that this body allowed me to give birth to healthy boys. This surgery is going to save my life & the scar will soon be a reminder of my strength, the love that surrounds me, & the life I get to live after. Thank you to everyone who has reached out, continues to reach out, & has been following along with my story. Thank you for allowing me to be vulnerable with you & seeing me through this difficult time. Heart Catheterization: https://www.heart.org/en/health-topics/heart-attack/diagnosing-a-heart-attack/cardiac-catheterization My Procedure: https://columbiasurgery.org/conditions-and-treatments/valve-sparing-aortic-root-replacement-david-procedure |
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