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 preparing 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 handled 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 chose option 3. 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 smoothly because my cardiologist had called in ahead.
At around midnight I was 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 defibrillator 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 go and 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.
(PVCs) are -Premature ventricular contractions: extra heartbeats that begin in one of your heart’s two lower pumping chambers (ventricles). These extra beats disrupt your regular heart rhythm, sometimes causing you to feel a fluttering or a skipped beat in your chest.
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 (Congenital Heart Defect) people. A Flutter 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. They would do an ultrasound, a TEE, and if all good tbed shock me via a defibrillator.
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 and 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 several times when I was alone, due to fear of the unknown and known overwhelmed me. I was also subpose to be going on a big trip. It was important to me for various reasons. The biggest reason tho was mainly to see my man and meet his family. They had told me I’d be able to still go. I shouldn’t be in the hospital more then a day. Obviously that wasn’t the case. I’ve been wanting to go on this trip for years… I am not exaggerating. Something was always getting in the way tho. And now I was was was in the way. That was one of the biggest reasons I was upset. I sad I had to cancel / postpone the trip yet again. I had no choice, and no I dea when I could go again tho. They said I shouldn’t be flying for at least three months. Thank God I purchased a ticket with insurance. Even tho I was finally getting better. I was heart broken.
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 were required to get. I have small picky veins from being poked since I was born and often they like to be difficult…
My whole arm up to my elbow became an ugly dark purple for almost a week… The pictures make it look better than what it really was. 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.
Other than postponing my travel plans some good came from the hospital stay. I always believe good can come out of every situation, even bad ones… I was able to meet some wonderful people including some “Zipper Sisters ” from Facebook. They were such a blessing to me and a nice distraction. (Again I had pictures but they seem to have poofed I will add them when if I can find them…)
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╮
“God Supplies And Miracles Happen”
The Beautiful Print book is Live again!
“God Supplies And Miracles Happen” The Beautiful Print book is finally Live again after months with a whole new look, a better word flow, and the same internal art.work. Here is the link directly to the Amazon Create Space store. The Book Will be on Amazon.com site in a few days. (Amazon and Create Space are the same thing.) https://www.createspace.com/6110807
Amy Jane Sandberg is working hard for you….
After two moths of planing and about $400.00 I had my first public appearance at a Spring Festival in Washington stare May 29 – May 31! The whole thing was a roller coaster ride of emotions. about a year ago I made he decision I would have a booth at the local festivals during the 2015 summer. I have a local friend Who just started her own business Selling ‘Clever Container’ products. https://www.facebook.com/JennifersCleverTreasures We decided to share a booth together. We dd our research and plans and before we knew it the summer had snuck up on us! Which split the registration and insurance fees. It was a lot more work then I expected it to be. Not only was I getting my stuff ready I was also her Business Consultant. ( My consulting page: https://www.facebook.com/A.Novel.Life )
I helped her get started setting up her page, creating her labels, Creating her Banner and more. When I was done with her stuff I realized how much I had to do still. Buying the books, a Banner Business Cards, Magnets, Demo products, Things to sell at the fest besides books to draw attention and of course we needed an Event Shelter. I bought a nice Yellow 12×12 $299.00 Colman for sale for $99.00.
When all that was settled we passed out fliers with in the county and handed out more then 50 businesses cards each. Honestly that was more then I expected to. Since I was going for it I decoded I wanted to raise awareness and collect donations for #ACHA and #MendedLittleHearts Because I am 1 out of 11o born with a heart defect.
When The day finally came to set up we were freaking out nervous! We decided to go early despite peoples suggestions which was a great thing because we got to choose our booth location at the Festival! With two separate businesses She took one side and I took the other but before we could set up our tables we needed to set up the tent. It isn’t a quick popup (which wold be a great Idea) When we first opened the tent bag We were surprised at how many poles and parts there were and we became over whelmed… Thank God my sister Amanda and her Husband were with us she is great at reading instructions. When we got it half way set up it looked like it wasn’t going to be taller then 3ft.. We started to panic… Jennifer called a local store to see if they had a 10×10 for sale…She was about to go get it with my brother-in-law when Amanda and I decided to keep setting up the tent just to be sure…. To out surprise and relief…… We gained the height we needed it was about 5’11 on the inside but it had lower sides to keep the sun out. Extremely pleased and tears and broken wallets averted we began to set up out sides of the booths. ^_^ All in all set up took about 4 hours, we were so glad we had decided to come early. We had a few issues with how to tie the banners and arrange the tables, once that was settled it all fell into place.
It was a high heat weekend and our helpers canceled due to the heat and illness so It was just her with her kids and I there for the three days. We decided to leave the big stuff but to take our important stuff home at night because of the stories we heard about thievery. And we used used every mussel we had doing so every morning and night. It took us about an hour set up and tear down time and by the last night we felt like pro’s. We made sure to come early and to stay late so we got great parking spots for he loading and unloading. But all in all despite the heat and sore mussels it was I think a great success. Jennifer who had a lot of great products was able to get the word out for future home parties. Due to the extreme heat There were not many people at the event as they had hoped for.. All the booths said they suffered costs due to the lack of people.
I truly am glad I did this I leaned a lot and I feel like I took the next step getting the word out about my books. I sold more then I thought and I met some really interesting people. I do have some tips tho if you are planning on doing your own event:
*One -Make sure you limit how much you will bring – less really is more. If you have to many things people won’t know what to look at first and your tables could look over crowded. Pulse your mussels will thank you later. One of the Booths near us was complaining about how little he sold and he kept trying to pawn off stuff to us.
*Two – Have a idea what you want your booth to look like so when set up time comes you aren’t panicking. Three make sure you come early no matter what they say. First come first serve is most event’s motto. We had quite a few people people upset because they came late and didn’t get to put their tents where they wanted. People were walking though the event before moat booths were set up we made most our sales in the mornings and evenings.
*Three – Know the location where you will be, and prep what you may need such as: Bandaids, water, food, food money, sun block, tape scissors, a coat if indoors, etc.
*Four and most important You have to talk to the people walking by, some will just pretend they don’t see you but others would have passed by if i had not said Hi. Don’t be a robot be yourself smile and be friendly. I don’t want to push my book on anyone It is quite personal but when I got over being shy (which is not the usually me) and I actually started talking to people I started getting more people. Be careful not to miss people who want to buy something tho because you talking to other people make sure you say Hi to everyone.
*Five Be – friend your tent neighbors. We were so lucky to be nest to some really nice guys, one a tent from Dish Network, and there was a Guy from Final Fight Radio. Which was nice because us bring to ladies in a crowed there were times when we needed them. Like when the drunk homeless guy wouldn’t leave. Or our last night when we had only half the help we had when we set up. We all helped each other out. The last thing you want at the event is enemies.
*Six- Don’t forget tables and Chairs… We shared the extra chairs we had with a neighbor booth.
*Seven- DO NOT Bring anything you cannot do alone. If its just you keep it super simple for set up and tear down. There were only about three tents with ony one person. But like I said you befriend others they will help you out most likely.
Don’t give up on your dreams no matter how long it takes you! You are awesome! That’s all I have to say other then I wish you could have been there if you weren’t and to those of you who were and who bought something – Thank you so much for coming it was great seeing you!
Please don’t forget to like my Author page on face book. I will be giving away a free book or prize if you already have the book to someone out of my first 200 likes. https://www.facebook.com/AmyJaneSandberg.Novelist
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ღ╮❤╭ღ╯ Amy Jane ╰ღ╮❤╭ღ╯
Hello My friends and Family,
I am so excited to tell you “A New Song” Has finally Been published!!!
I am not sure where to start. When I was asked to contribute to this book, I became excited at the opportunity to share my story, God’s story! But as I actually sat down to write it, I became afraid, that I would not be able to convey the message properly and that I could disappoint those who may be expecting me to write a masterpiece. I am presently struggling with some books that I also am writing. I am sure God is using this opportunity as a push. He is telling me to just do it, while using this opportunity to boost my confidence too. I know God wants me to share this story in any way that I can. He is opening new doors daily, not just for me but for you as well. We just need to walk through them – even if at times we have to crawl through. Whatever it takes for us to move forward, keep growing, and to help others do the same.
Any ways! Here is a note from the main editor, with the book Poster below.
I just heard from our printer about the book’s final price for 192 pages with contributions from 53 authors, 17 photographers/artists, and a beautiful color cover with semi-exposed Wire-0 binding that allows the book to open flat.
If we order 500– the cost will be $15/book
If we order 1,000 — the cost will be $13/book
So far, I have received orders for 237. Please let me know how many you plan to order so that I can get the best price.
I’m so happy that is is finally here!! There are so many awesome stories besiides mine in this book. It is a great Testament of God’s work!!! Please check it out for yourself! Email Diane or call her and place your order. I don’t thing it is selling online anywhere.. 😦
I can’t wait to share my story with you all!! I love you, and God Loves you too!!