After 3 months of following orders to get my blood pressure up, I was able to get it back up to what has always been my normal range (but is still quite low). Still managing a healthy lifestyle in both diet and exercise, eating plenty and drinking much water, my "episodes" of nearly passing out (dizziness upon standing, blacking out, fuzzy tunnel vision and floating dots) did not subside. They did not even get the least bit better.
I reported this to my wonderfully attentive and thorough cardiologist. She gave me a 24 hour holter monitor to wear, as I suspected would be next. However; I did not have many spells while wearing it as it was attached to me late afternoon and all I did in the next 24 hours was run once, sleep, and help Ellie get her morning started. Again, having a very vigilant and thorough cardiologist, I wrote her a note when I returned my monitor that I was curious if we should do this test again, maybe for a longer period of time so that any little thing that may be going on could be caught- hopefully, if it were in fact a rhythm issue and not just a blood pressure issue. She shortly thereafter had her most wonderful and precious nurse give me a call and inform me that she, Dr. P, would like to have me undergo a 2 week "event" holter monitor. I loved this idea. It was exactly what I felt I needed, as well. It at least helps give peace of mind. When you are solving a puzzle, you leave no piece un-turned. That is what Dr. P and I are working on together, here. While immensely thankful for this opportunity to be thoroughly examined, it also, in complete transparency brings out some of my fears. I never want my heart to get in the way of experiencing Ellie. Ellie started swim classes, "Mommy and Me classes" for 4 weeks, just the week before I was hooked up. I couldn't swim with this on. I cried briefly realizing that my heart was already getting in Ellie's way. I had a moment of human self pity. I always say I hope God will push my surgery out until Ellie is grown, or that God would just completely heal my heart by creating the valve he chose to leave out in the first place. But there are two things I must remember. First. God created my heart differently on purpose. And while some may question how God can allow such bad things to happen to little innocent and newborn babies, I know that God allowed me a wonderful opportunity to make a difference in our world for His glory with my unique heart. I consider my defective heart a blessing in so many ways. I see God all over my heart. I will never ever wish to be different than I am. I love my broken heart because God has touched it as well as allowing other people in my life like Dr. P and staff and special CHD friends to touch my heart, too. It has given me a beautiful and meaningful perspective of this life and how we may be small and weak in flesh but our Spirits can soar for Jesus and His great name and the power it beholds. We can overcome great feats with His great name. Secondly, I must remember that in order to really be present in Ellie's life, I MUST take the steps necessary to be my healthiest self so I may live my longest and strongest life in order to really be there for all the moments in her life as well as my husband's. I have to fight, be selfless, strong, and determined. It is ok to cry briefly, but then it is time to put on my big girl panties and raise my arms to the Lord above and let Him give me strength. For me, for my family, and for His people so they may see His goodness and light even in a dark time.
Next, she also set me up for my first ever cardiac MRI. I was to have this before having the 2 week holter monitor put on. Have any of you ever undergone one of these? I had experienced an MRI before, but not specifically a cardiac one. I was thankful for this exam as well to continue to investigate why I have been nearly passing out frequently throughout the days.
Eric took me early in the morning for the MRI. I was nervous only for the sense of it being a test and getting that test anxiety. Meaning, I wanted to "do well". This MRI was slightly more involved that a regular MRI. It was really rather interesting. You see, for an MRI, in order to get the best quality of photo, one must be completely still. But, as we are inspecting the heart- the heart is constantly beating, right?! And, I am breathing...making my chest rise and fall. They take images of the heart in-between "pumps" and also; in order to get good images, the radiologist had me perform what they called, "breath stops." It meant that in certain intervals, I was to take a breath and hold it until I was told to breathe again. It was not hard but certainly something to focus on. Eric laughed at me, later because I told him I would fall asleep in the tube during the test. He was like, "How?! you had to do all that breathing!" I told him it was between the breathing exercises, I would get so relaxed: there was air blowing on my face, I was under a warm blanket, I was wearing scrubs (having spent 9 years working in scrubs- it was like home), and the banging and clanging of the machine was like white noise. I never 100% fell asleep because I knew I was supposed to be awake for the breathing stops...but I did drift off so hard one time that my leg twitched me awake and I thought, "Oh no! stay awake and be still!" God certainly provided me comfort if that is what my family prayed for! LOL!
Then came the monitor. Nothing new, however I have not worn one longer than 48 hours. Essentially I resume normal daily life and activities, keeping in mind that I must not get it wet, and I had to keep Ellie from pulling and tugging at fun new things on mommy. While maintaining my running, hiking, and exercising, I therefore managed to get good and sweaty meaning I had to replace the lead stickers pretty frequently. Eric gave Ellie all of her baths just to be on the safe side. This monitor allowed me to press an "event" button when I had one of my "spells". This is helpful in pinpointing the rhythms of my heart at the time of the events and in helping decipher if the rhythm is good or is in fact the culprit....or if it is really just my blood pressure as we hope and suspect is in fact the case. I am just glad for medical knowledge and technology to help us see what is causing these "spells."
The very first day I had it on, the monitor company called me after I had ran my 5k at the Y. I was just starting my cool down when I checked my heart rate which read 184. It was this exact rate even when I was in high school running the same. I rarely check my heart rate when I run. Is that weird? I just am always thankful to have pounded it out and to be able to go take a shower and relax and eat! Ha! Anyway, about 10 minutes after I finished my run and was lifting my little weights, the company called. The lady on the other end asked, "Are you ok? We got an alert about 10 minutes ago....are you having any symptoms?" I told her I was great and that I had been running and am currently exercising. She replied, "Ohhhhh well that explains it!" This was not the last time they called after I finished a run. The highest I ever saw my heart rate rise was to 196 after shaving 20 more seconds off my best 5k time. I really was busting it to get that time shaved smaller and smaller. I never have any symptoms during my exercises and running. It was a little comical actually for both parties as the company would call and politely check on me after such a high heart rate. I would explain I was fine, just running and they would laugh as if that was not at all what they thought was happening on the other end of the wire. They were always super nice and very conscientious in caring for me. I was very impressed with the "LifeWatch" service. I even had a full conversation with one of the nurses! They went above and beyond! Cheerful, sweet, kind, and bubbly voices on the line! Super fast at answering my calls when I had questions, too.
Wearing this monitor was an experience. Again, this was not my first time wearing a monitor, but it was the first time wearing one for so long and being contacted so frequently while wearing one. It was the first time I have worn one actually (to my awareness) searching for a culprit to a problematic symptom I have been experiencing and not just routine maintenance. Sometimes my brain would wander into different places. I could go from hardly caring or noticing I was wearing it, thinking it is most likely and surely nothing going on with my heart, "I am fine still for now"...to letting my mind run away, wondering if I were in fact nearing the long awaited pulmonary valve replacement surgery.
I had a lot of different thoughts and many moments talking with God while wearing this. To start, I was constantly thinking these dizzy/light headed spells/ almost falling out were scary but hopefully just a result of a high athletic activeness and having need for more electrolytes and carbs. But then a little devil would pop in my brain and remind me how realistic it is I will eventually have another surgery for a pulmonary valve replacement...and that means not waiting until the last minute when my body is severely weak, tired, and highly symptomatic. It means catching issues early and nipping them quickly and safely. So my reality of needing surgery and knowing it was likely to be in this time frame "ish" and possibly even more likely to come along after having a baby made me focus too much on scary thoughts. But, being scared and having scary thoughts is not bad. These thoughts allowed me to be strengthened in myself and more importantly, in God. The wandering fear taught me to take deep breaths, take a step back, and make my inner strength prevail and rise. It taught me NOT to shut down but to keep fighting. Fear is not bad. It is normal, but we must allow it to equip us with strength and not to have us come crumbling down. I prayed and prayed and talked to God with many praises for all circumstances. I prayed for His will and His peace. I prayed this was something super minor like blood pressure (in comparison to needing open heart surgery anytime soon). But I also clung to the purpose of the life God created me for and that is where I found my strength. There was one day where satan was really going to attempt to cripple me with all the negative thoughts any heart survivor waiting in the balances for the next big thing would potentially possess. I had just finished my usual run and was feeling awesome until I took another phone call from the monitor company. I was so struck with fear (Not due to them) that I stopped lifting weights and got in my car. I needed to go somewhere- to a safe place and I needed to breathe, reflect, and talk to God and get my mind right. I didn't want to talk to anybody. (I am a major introvert...bubbly, but like to process in silence). I drove with windows down and peaceful music playing to our home under construction....I never told Eric this so when he reads this he will know for the first time... I walked into the dusty freshly dry-walled space to our bedroom. I went to the corner of the window overlooking the lake (where I plan to have my reading chaise lounge) and I sat on the dusty floor. I was in silence and I was in a safe place and I was within walls literally filled with God's word. I let light tears softly drip off my salty, sweat dried, flushed cheeks and I spoke to God. He and I discussed how my life was created for His glory. My body is a vessel through which He is to receive glory for His great love, mercy, and miracles. I told God I would never ever want a different heart or body, yet I am scared for what I do not know. Type A planners like me do not like not knowing when big things are going to happen. We do not like not knowing what is going on. We do not like heavy surprises. We (I) tend to prepare mentally for the worst just to be safe. Cue my anxiety issues, lol! God reminded me to cling to Him. God reminded me of His power, love, faithfulness, and His promises. God reminded me that He is Healer. God reminded me He gave me this defective heart to show others who are "lost" His love and power. God reminded me that so many more people have actual real problems and medical battles and I am so healthy and strong. No one would know I was born with three congenital heart defects by watching me. Some friends of mine are young and battling breast cancer, chrohn's disease, port placements, etc. Their lives are full of medications, treatments, weekly doctor visits, surgeries, and their lives are altered drastically. I am basically a normal girl who is just waiting for my next opportunity for my heart to be even stronger than it is now. (That is how to look at this). I am waiting for my upgrade.
If I look at myself with self pity, negativity, or remain in any sadness or fear, I will not have the spirit and fight I need to remain a strong heart warrior and survivor. There are reasons why I am the strong, tenacious, and stubborn fighter I am. First and foremost, God knitted me in my mother's womb with a defective heart ON PURPOSE because God created me with a purpose and that heart IS my purpose. I must use it to fight and display His grace and power and to encourage others and show light in dark times. I must be the light. I must let God's light shine through me. I must let others see why God intentionally having created me with a defective heart is sovereign and beautiful and full of so much good. It also helps to lead to cures for others. It leads to better medical technology and advances. My heart has purpose in and from God our Father. Secondly, I am strong because I CHOOSE to be. I am telling you very transparently the fears that I do get from time to time. But I have to choose to rise above those fears, cast them upon Jesus because He cares for me, and I must choose to live my best life with a strong fighting will in order to thrive and encourage others as well as to be present for my family and friends. Thirdly, I am strong because of doctors like mine who care for my heart both emotionally and physically. And of course, last but most definitely not least in any way, family and friends keep me strong by making me laugh, making me drink my water, making me push in my running, making me get up and not wallow in self pity. They make me fight. They lift me up. They encourage me and show me all I can and need to be. There is no coddling and there is no taking it easy. They push me and this is what I need. My poor mama was the brunt of my anger and pain during my last surgery in 1995. I told her all of this was her fault and that I was mad at her. I threw a pillow at my nurse and I was as mad as a cat in a baptismal pool. Mama just took it. She is stronger than I will ever be. I was not acting that way to be a brat, I was just a 4 year old girl who was confused and in severe pain and angry. While my mom did not enable that behavior, she also knew I needed to fight in some way and some form. She was my punching bag. She made me get up and walk. She made me drink and eat to regain strength. I was so mad at her. But she pushed me and taught me to push through my pain and self pity and while she received the worst retaliating anger from the sauciest 4 year old girl, she also created a very tenacious daughter. I want to fight. I want to excel. I want to surpass expectations. I want to be strong. I want to be healthy. My husband has already showed me after my C-Section that he will push me, too, to get moving again. (He is more gentle than my mom but still stern enough to make sure I am not allowing myself to surrender to the fight and the pain.) (And, I was not as mean hahaha!) I know am equipped thanks to my mom and God to push all that anger and pain into a fight to be strong and to thrive.
I have no clue what these exams will show. Hopefully, oh how I hope, they will all just show what we already knew...I need to raise my blood pressure and eat and drink more to keep up with my high activity level (which I have already been trying to do). But, if they show something more....I want all my followers, friends, and other heart warriors to know...I am ready to fight. Big battle or small battle. Never ever stop fighting. I will daily maintain a healthy active lifestyle and healthy diet. I will keep God first and remember He is my healer. And I will praise Him even in the worst times. But let's just hope I have a silly body that needs to get its little act together! ;) I just feel so strong...the strongest I have ever felt in my life apart from these "spells."
Blogging helps me sort my thoughts and emotions as well as to look back on how far I have come in life as it is ever changing. Thank y'all for letting me update y'all and be real with my heart's feelings as we wait and see! Nothing or something.....keep fighting the good fight! :)
No comments:
Post a Comment