Hello, new and old friends. For those of you who are new, I have was born with Truncus Arteriosus, a congenital heart defect. I was the third person in the world to have my whole heart rebuilt, I have had three open-heart surgeries, been in two comas, had four stokes one of which caused me to be brain dead when I was twelve.
Here’s a short book I wrote about my medical past, including being brain dead and in a coma. On sale until September 27th.
I’ve been doing great recently so I thought. Yet, I wasn’t. Things were falling back in to place but I was just sick and tired a lot. I started having what I thought were “new panic attacks”. I’ve had my fair share of varied panic attacks due to medical PTSD, they are also hereditary on my mother’s side. Theses “New Ones” tho, I had none of the usual symptoms other than my heart racing for a few mins to a couple hours. Usually, they only happened before bed and when I woke up. I had been dealing with “New Attacks” for almost a month. I had no pains and no stamina. I thought I was just out of shape, so I kept trying to be productive, but when mid-afternoon came around I was spent.
When I went to doctor for antibiotics July 16th 2019, I needed for a trip I was getting ready for. I was having one of those “new attacks”. I met a medical student who started asking me a ton of questions while waiting for the doctor. They were not unusual questions for a med student to ask me. I told him all about my history and what was going on… (I was there anyways right. Just be honest and tell him I’m having a new panic attack.) He then asked me more random questions. I don’t remember them all. I told him what I told you above, he took my vitals then left the room to get my primary. Who in turn came in to immediately run an EKG- Electrocardiography -It’s a test that records the electrical activity of your heart through small electrode patches that a technician, nurse, or doctor attaches to the skin of your chest, arms, and legs. My doctor then disappeared with the results and came back on the phone with my cardiologist. Honestly, at that point, I was getting scared. I called my mom and told her something was up and asked her to pray.
My doctor put my cardiologist on speaker who proceeded to tell me my heart was racing pretty fast and my rhythm was irregular. I started praying under my breath and asked how serious it was. My cardiologist told me he wasn’t able to answer that question because he’s not there and instructed that I go to the hospital with a trustworthy Truncus Arteriosus colleague of his. Because he was four hours away and his colleague was only two. I was worried and teary-eyed at that point. He told me because my heart was racing and irregular. I had three choices: 1. Go to the local Er and have them transport me via ambulance. 2. Have someone drive me as soon as possible. 3. Do nothing hope it stops but he’d rather I not risk it. I asked if I would need surgery. He said he was pretty confident it could be handed via medication. So I pulled myself together and went to tell my parents what was going on, only to find my dad already in the waiting room.
I convinced my dad to meet me at home then we’d drive the two hours there. Honestly, an Emergency Room Ambulance transfer would’ve taken longer and been a bigger hassle for everyone. My mom opted to stay home because it was already 5pm and she knew dad would probably stay the night. Someone had to watch the dogs. Even tho she wanted to be with us, I told her it was fine. I reassured her that I didn’t feel bad in any way, I was just tired. When we got there it was close to seven-thirty pm. The check-in and triage went smooth because my cardiologist had called in ahead.
At around midnight still in the Emergency Room, they gave me an IV for fluids, because I was dehydrated and drew lots of blood. After running a bunch of tests. The doctors on call told me I had a flutter in my upper arteries and my heart rhythm was out of wack. They gave me some medicine to see if they could calm my heart down and wanted me to stay overnight. I was really nervous, something like this happened to my dad a few years ago after a heart attack and he ended up needing a deifibuulator implant. They reassured me I wasn’t having the same issues as he had.
I found reading my Bible out loud calmed my heart a bit which was very good. My rhythm went from dangerous to not so good. Honestly I don’t read my Bible as often as I should. Yet, it goes where I sleep always! I find having my Bible close, especially at night gives me peace.
They soon sent me to a room and gave me a heart monitor to wear. (I posted pictures below) All night long they were coming and checking my vitals. I barely slept, I was praying non-stop, and reading my Bible.
The next morning after running more EKG tests and taking more vitals, they realized my heart rate was not changing and my rhythm was not getting better. When they first told me I had a flutter I thought they meant a generic flutter. I’ve had PVCs before, due to my odd heart so I really didn’t think anything was going on. Apparently, A flutter stands for Atrial flutter – Your heart misfires its electrical impulses, bringing on an irregular or fast heartbeat in the upper chambers of your heart. Making it to fast or to slow. To slow is more dangerous. PVCs and A-Flutter are common for CHD people. And is different from Afid which is what my dad had among other things.
Around 11 a.m. they came in to discuss a plan. Really – I didn’t have an option. If I wanted my heart rhythm to be good again without surgery of sorts. I had to agree to their plan as I describe below.Around two pm they arrived to do an ultrasound- (image using sound waves to produce pictures of the inside of my heart externally.)
Then they prepared me for a TEE (-A transesophageal echocardiography. Which is a test that produces pictures of your heart. Using high-frequency sound waves (ultrasound) to make detailed pictures of your heart and the arteries that lead to and from it. Unlike a standard echocardiogram, the echo transducer that produces the sound waves for TEE is attached to a thin tube that passes through your mouth, down your throat, and into your esophagus. Because the esophagus is so close to the upper chambers of the heart, very clear images of those heart structures and valves can be obtained more detail than a standard echocardiogram can give them. The sound waves are sent to your heart by the probe in your esophagus that are translated into pictures.) I was escorted to a small room after and I was given me some liquid to gargle to numb my throat, and some to swallow so they wouldn’t damage my throat. The anaesthesiologist used to be a nurse for children with Congenital Heart defects and she was talking me through it with great patience. This test had to be done In order to make sure I had no blood clots in my heart. I got panicky when my throat went numb. I thought I wasn’t breathing. (Remember, I went in sick with sinus issues, and was breathing through my mouth mostly.) The woman reminded me I had oxygen on and it was currently at 97%. She then gave me a little sedation to calm me down. While telling me that it is quite common for people to feel that way. (I wondered if that was true tho.) When I was able to swallow again, my throat still numb, I told her. She said good, and that she could see the cardiologist coming. He introduced himself, told me the plan, asked me if I was good. The next thing I knew I was waking up a couple hours later. I’m pretty sure they had said that they were going to keep me mostly awake for the TEE, but I guess they were worried I couldn’t handle it. Thus, they put me completely under. I won’t lie, I’m glad they did.
While I was sedated. They didn’t see any clots and went ahead with shocking me. Which put me back in my normal sinus rhythm and my heart rate is mostly normal now. So I was told.
My throat was sore from sinusitis, but after that, numbing stuff ect it actually felt better… My back and chest were a little sore the next few days but only because they did the defibrillator shock to reset my heart. I was in the hospital a total of five days andv six nights. All the while they closely monitored me and searched to find a bata blocker that would work on me. I’ll admit it, I cried a few times when I was alone and fear of the unknown and known overwhelmed me. When I couldn’t sleep or relax I’d flip through my Bible and read random passages writing down anything that stood out or encouraged me. Like- Mark 5:36 “Daughter, thy faith has made you whole, now go in peace.”
I was an IV blood thinner, not heparin. I don’t know the name (I’m allergic to Heparin and Warfarin. It is genetic and rare… I posted info and links below.) Along with my Coumadin just as a precaution. I was later given a shot like ENOXAPARIN (LOVENOX), DALTEPARIN (FRAGMIN): <A Low molecular weight heparin injectable anticoagulant blood thinner used for both the treatment and prevention of clots. They are produced by chemically breaking down heparin into smaller-sized molecules. But something newer instead, but non-heparin based.> Called: FONDAPARINUX (ARIXTRA): Fondaparinux is a synthetic blood thinner, acting similarly to low molecular weight heparin. It blocks the clotting activity of a blood-clotting protein (factor X), and it is administered via an injection under the skin once daily. Because at one point my vain blew from the IV leaking into my skin. I also had bruises all over too from all the blood draws they had to do. I have small picky veins from being poked since I was born.
My whole arm up to my elbow became an ugly dark purple for almost a week… They had to keep an Iv in me so they switched arms.
One of the last mornings I was there, I felt bad because I scared a phlebotomist or Iv tech when I was half asleep by being a brat. I haven’t had the best expeinces in my medical life and sometimes PTSD is a b…… I made sure I apologized and explained I wasn’t fully awake and was thinking something else was going on at the time… I think after that they were a bit scared of poking me tho… However, most the time I tried to stay positive and in a cheery mood. They were one of the best hospitals I’ve had to stay at ever.
Again, I posted links below for those of you who wanna know more…
I usually don’t talk about what goes on with me anymore. I was really shaken up. I’ve been so good for so long, with minor scares. I put off going to the doctor mainly I guess because, I was afraid of what they may say. I was also worried about my family and all we’ve been through lately. I didn’t wanna cause them more stress.
I asked so many questions. I especially asked them about a cause or trigger that could’ve avoided this happening. He said there really was none, it’s just something that happens to congenital heart patients; especially those with Truncus Arteriosus.The doctors said A Flutter can be pretty common for Trunkis Arterosis and other CHD patients. If not caught in time it can really damage your heart. I really didn’t think anything of it because I had no pain and panic attacks are common for me. It was a really scary realization of what was going on within me. It’s a good thing they caught it before it got worse. Please take care of yourself and if something doesn’t feel right or it is out of the ordinary, make sure you talk to a doctor.
I had to postpone my travel plans but it is a good thing I did. I was able to meet some wonderful people including some “Zipper Sisters ” from Facebook. I am doing so much better, just getting used to the new medication. I see a big improvement in my activity, abilities, and sleep. I’m still a bit sore and my arm is finally starting to look natural again. I am still shaken up from this experience and having issues sleeping alone at night like when I got home after my second coma….
With congenital heart defects, you need to see your cardiologist regularly. I was told I may never have another attack again, which I pray will be true! I’m going to make sure I take care of myself. I’m now on Metropol the Beta-blocker and beginning to feel like my old active self again for the most part.
God bless you all and thanks for reading and supporting me!
╰ღ╮ Amy Jane Sandberg╰ღ╮
#CHD (Congenital heart defects) Grow up to be #ACHD (Adult’s with Congenital heart defects) If you have a CHD, you are a Survivor! Just like me. We are all born special in some way or another. Don’t let your CHD hold you back! We all have a purpose, we all touch lives and we help others in our own special way That God gave us… CHD may limit us physically but it can’t stop you! Thank God Your purpose isn’t mine, because without your unique gifts and talents, some of us may not have lived.. Don’t let others put standards and limits to what you can do. Only you can decide
If you are looking for a work out, or looking to help out anyways.. Seems they added a lot more options to the and websites since last year. This is awesome! #MendedLittleHearts #ACHA #FightToLive http://www.congenitalheartwalk.org/ —I encourage you to get involved in someway..
Hello Dear Friends,
Wow what a crazy year it has been…. I can not believe all that has happened this year… This year seems like it was several years all wrapped up into one.. I forget what all I’ve written about… Last year I was angry and upset, I was lost and confused, I was drained and empty feeling, and it lasted up till November this year. I had a lot of falling outs with people and a lot of misunderstandings. I learned I suck at explaining things in words. I should stick to writing.. lol.. Even then is hard to express myself. I am happy now. I gave up trying to make things perfect, now I am just enjoying what life dishes out. What God has for me… That is really the best way to go… Falling into God’s will helped me fall back into my dreams and my joy. My passion is to help people via my written work and by me being me. That makes me happy…
I lost a lot this year but I gained so much in return. For the first time in many years I’m happy with who I am… I keep telling you: Only you can make yourself happy. And that’s mostly true.. If you lean to let go of all the hurt and stress you hold inside, and Let God in, is one way. Another is you can choose to be happy, choose to look for the good in every bad situation. Only you know what is holding you back and keeping you down…. Also having that someone who has faith in you and is constantly encouraging you and helping you makes a huge difference. I don’t know what I’d do without those awesome people in my life…
I may wear my heart on my sleeve, but its because I want you all to feel loved. There are so many different kinds of Love…. And I love you all. My heart was made big just so I could love you all. 😛 Some of you settle for just Like… Being liked is good enough… But you are better than that. You deserve to be loved… No one is perfect… We all mess up… That doesn’t mean we don’t deserve love….
I don’t know what I was planing on saying, I don’t know if anyone even reads this… Take this next year with a seed of hope.. Don’t let last year get you down. Tomorrow is a new day -wait better yet- a New Year!! So —- Make new choices… Make good changes to your life that will make you happier.. Don’t wait till midnight to do so. Do it tonight. Every one is suffering in one way or another, everyone has issues, some worse then yours believe it or not.. You are blessed and lucky to have what you do… If I could ask you to do only one thing and you would’ I’d ask you to let you wall down and let people in… We are made to need people… So many complain about not finding love…. But if you won’t let your walls down to let anyone in then it will never happen… I don’t just mean your one true love, it counts for friends and family love too… If you stay guarded, no one can get close… And you will keep staying empty and lonely.
Don’t Give up on your dreams, fight for them, I don’t believe anything worth doing or reaching comes easy….. If only it was…. Then life would be boring?? :p
Thanks for all the great memories this year, and the adventures God….. I thank you for tomorrow and t new year you are giving us… I pray it brings Joy, closure, togetherness, and fulfillment like never before!!!!
My biggest accomplishment this year was getting closer to God and publishing my personal short story
ღ╮❤╭ღ╯ Amy Jane ╰ღ╮❤╭ღ╯
Hello New and Old readers,
I am so happy. A few weeks ago I finally finished my short summery / preview for my book to come.
Once completely Brain Dead; Two comas; Three open heart surgeries; Third person in the world to have her heart completely rebuilt; Three strokes; plus so much more. Yet Alive Strong, and still living life Abundantly! She’s one of a Kind, and lives to serve God, standing on His word – the Bible. Her favorite verse being: “The Devil comes only to steal, kill, and destroy; but I, come to bring life and to bring it Abundantly.” ~John 10:10
http://www.lulu.com/spotlight/AmyJane27 It is free to download. In Pdf and Epub ( for nook and other e readers) format
I am so excited to share this with you all for free. There was a scare; I thought I almost lost it. I had accidentally deleted the project and had trouble re-submitting the work. I contacted them for help, and well… They didn’t help at all. I figured out there was some hidden formatting in my document when I edited it and had to copy just text and re-do all the prior enhancements. Such as: Italics, bold, spaces, headers, and footers.. You need to basically submit an almost clear format free project… Make sure, if you plan on using Lulu.com, you read the info on how your format should be… And does a test run… It is also really easy to edit your work… I really want to share This story with you. The book has been hard to write, very emotional.. But it is getting done.. I Pray you all like it.!!! Thanks!!! Have a great weekend!!!
Have a set goal do your best and allow for unexpected bumps in the road, because they will happen, but keep a smile. Because You will make it, if you do not give up. ~Amy Jane
“Miracles Still Happen Today”
This Book is dedicated to:
First and foremost God my Father the Alpha and Omega! My beloved family! And every one who believes in God and has Jesus in their hearts! But also to those who do not believe in Jesus or my Father God yet.
!This is to Everyone!
~With all my Love~
I want you to know that God Loves you and cares about your life. Whether you think so or not.
And I would like to add…..
“Shit (always) happens”
My Opening Words to you my readers.
You are probably wondering what this book is going to be about… Well, honestly I don’t know what exactly myself… I am just following God’s orders and writing it. This has been years in the making. The book should have been done well before now, “I think”. However God’s timing is always perfect and more has happened to me and I now have clarity and wisdom I can use to better express myself.
I can also tell you it will have key points of my life story and people I know which will all be based on facts. I promise I won’t bore you with the little things in my life. I will be pouring my heart out as I write this. It has not been and will not be an easy task. It has brought some very raw emotions to the surface, for me and for the others involved in my life. Nevertheless these events have to be told so that you may learn from them and find your own strength, clarity, peace, healing, and most of all JOY!
To reiterate the main topic is about my life. How it has not been easy to live for me. How it is not easy to live as a believer for any one Christian and non Christian a like. And how time after time we find the strength we need, the faith, the grace, and miracles big and small. You will be amazed by some of the stories and maybe brought to tears at times too. But in the end I hope you will smile and find a personal walk with My Father and yours; in your own life!
I ask that you please take the time and read each bible verse I list as they come up so that you understand the points, examples, I am making as I go. I am compiling a list of the ones I am using in full, in this book. In King James Version and N.I.V. for your easy access and in case you do not have a bible or internet access. I do suggest you look it up on your own when you have some free time too.
Disclaimer: I will have you know:
I am writing what I know to the best of my ability on the many circumstances in which the events happened to me with accuracy. And not exclusively in the order the events took place. So I will also add a time line in the back of the book. But I will try my best to stay on the main time line. Everything I describe is indeed FACT not fiction in anyway. Please read with an open mind.