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╮
🤔Someone asked me what my goals are for this month. after thinking about it for a few days here is my answer…. I’m going to keep it simple.
〰️My goals for the next few months〰️
📌 Write for at least two hours a day.⏳📝📇💻
📌Finish Spring / Summer cleaning.🛍🍃🛢
📌Finish A book or several books.🧝♀️✍🗂📚
📌Keep in contact with people💌💕
📌Work on Blog and A Novel Life LLC.
😉 Last but not least -Make you Smike!
╰ღ╮ Amy Jane Sandberg╰ღ╮
Hello My Loyal Friends and Family, Lately Life has been for me like a Twister and I don’t mean the game. I mean the big scary Tornado kind. Fasten your seat belts, your about to enter the vortex of Life! Some Good, Some Bad. I don’t know where to start… It guess it all started when I moved up north! I had to lean to live out of a suit case, I had to lean not to plan so much. That was hard, I greatly enjoy planing things, I lost a love and gained a stronger better love then I could have hoped for! I had a small stroke. Fiances have been tight but I have been lucky enough to be blessed enough to still do things I enjoy, like get an Ice Tot-ti and a slice of quiche on the weekend at the local cafe. I’ve had several emotional break downs, while working on my book and at other times, which I highly regret. Among other struggles, life has been mostly good. God is always Good! Last month I went to Florida, My dad and I drove for five days across the USA, to see my sister, her son, her boyfriend, and other people we care about. It was a great trip, though I missed a few planned events with some people due to schedule differences. I was so happy to see my family, I miss them so much, though I don’t think I showed it well.. My nephew is getting so big so fast! My sister has some room mates with her right now and they have a son who needs a lot of attention, and is cute as a button. I wish I could have adoped him. He needs a good foundtion of rules and love. I would have loved to be the one who gave it to him, since his parents are lacking in that area. However they do seem to care about his well being. Where they lack my sister has taken over and is doing a great job caring for him when they don’t. I am so proud of her. She is a great Mother! I also got to go to an awesome drive through zoo with lots of unique animals that one can not see at most zoo’s. We had a white rhino stalk us and at one point we worried he would ram our truck! EEKK! Thankfully he decided to go by with out a scratch. We fed giraffes, man were they cool!!! I wanted to take Cupid home, he was such a lover!! ***SPOILIER FOR ZORRO THE DRAMA*** I got to finish the Disney Zorro series with a beloved friend! I love that Zorro!! (hums the them song, he marks them with a Z! ) He had some awesome outfits, moves, I really loved most the characters, especially Zorro, Bernard, Sargent Garcia, and His loyal friend.. I didn’t care to much about the sudden ending, I had hoped he would have settled down with a woman……. I guess he Knows that he is mine ;p (Just Kidding) I will look into it latter especially the books.. Besides The Xmen, Spider-Man, and Superman!, He is one of my favored hero’s! I also went to Florida to get my first Dog. The family has had dog’s before but this one is all Mine. A female, A Pure, Blue Harlequin Great Dane, with one blue eye and one gold eye. My parents own her half brother, that part was not planed. I fell in love with her before we knew the blood line. She is a hand full. She is headstrong, very very smart, sneaky, a climber, and has a attitude, but she is also sweet, playful, loving, and great with children, and other pets.. She is a real gift from God. She has a real way with people too.. It is hard to stay sad with her around, I call her my little healer! I don’t know how I made it with out her. She is growing so fast too! Lily Belle is about 15 weeks now, about 40lbs, and is up to my knees already.. I’m 5 feet and 1 inches tall by the way… Thankfully she is now mostly house trained, at least at my house! ;p Did you know puppy poop smells much worse then a baby’s dirty dipper… EWW!! It took us 7 full days to drive back to Washington!! Sheesh!!!! We had to avoid snow storms, my Nitro does not have snow tiers, and is not a 4X4. On the way back home we saw my other brother and his girlfriend, one of my dearest friends with her family including my god children. I was so happy to see them! I wish they lived closer! I will make an effort to not wait so many years next time!! I got to taste the great salt lake flats, and man was that good salt! It reminds me we are the salt of the earth… Says the Bible.. we saw a huge tree farm that went on for about 15 miles and probably covered over 1000 acres from baby to adult trees! It was a unique site to behold! We stopped at my grandma Nanna and Baca’s house for one night and got to experience my first snow of the season there in my birth town. It was amazing! I am so thankful for that!!! We also stopped at a Cherokee town, and I got to learn more about my heritage. Along the way we went through: a few small snow storm’s, a sand storm, salt smog, city smog, saw a coyote run across our path, saw lots of: Antelope, Buffalo, Deer, and lots and lots of cows… Not including the road kill of: frets, beavers, skunks, badgers, coyotes, foxes, Porcupines, Muskrats, nutrias, bob cat, a lot of some kind of animal that was a ball of fur kind of like a big hamster not sure what it was, and much more…. It really saddened me to see so many dead and that I saw a wider verity of dead animals then I did live ones!! http://roadkill.michaelgeraci.com/ here is a site of some of what I saw, it is not for the queasy to look at… Next time I think I wanna take a train! When we finally got home, we had to a lot to do especially me, I had to finish settng up the guest room / office, and other things around the house before the holiday visits began…. I was all excited and motivated to work on on my books, when I got done with thr chores a few days latter only to find out my free word trial had worn out. Boo.. Two weeks latter, For thanksgiving my other sister with her husband, and other brother with his girlfriend with his children our other nice and nephew. (Yes I have 4 siblings, there are five of us all together.)Came with five dogs all together and nine people it was a mad house.. Yet it went much better then any of us had hoped. It was very hectic, but the time together seemed to flow nicely by. Now every one is gone and I am left alone once more at my house, with a sink full of dirty dishes, a bunch of torn peppers around the house, and Christmas around the coroner… My head and body feels like a whirl wind of emotions, pains, aches, thoughts, and it is all making me dizzy… I can’t believe how much has happened this year, with the move, getting a story published, my new house, ect.. It feels like it happened so fast and at the same time this year feels like it has been several years in the making.. It has been one struggle and blessing after another!! By the way my sister got me office professinal from work, but now she can’t find th code. I pray she finds it soon I’m itching to write!!! ;p I love you, Be safe, God Bless you all! ~Amy Jane