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╮
My dad is one of my biggest heroes. He would go to all my doctor heart appointments and act silly to keep the mood light. I have always tried to be a good daughter. [I’m not perfect tho. 🤣]
When I was a child and he worked swing shift, I would always make excuses to stay up and wait for him to come home. That became easier as I got older. Sometimes when he got home we woul all as a family go swimming under the stars. He has always strived to keep the family close and to be a good dad 👨 ❤
He is a kind man who works hard. He is always learning new things and creating new things, and inventing new ways to fix things. He is almost always willing to help others whenever he can. He never says a bad word about anyone. Whenever he got sick he would hide it if possible. He hardly ever showed weakness.
In 1992 just before hurricane Andrew he had a heart attack. That was the first time we saw him really ill. I remember sitting outside the hospital door in Orlando while Hurricane Andrew passed over the state. Trying to entertain my sisters and not worry about my dad while mom was with him. That was a difficult task for sure. He refused to let us girls see him which was painful for us. Thankfully he survived and recovered.
It wasn’t until December 2015 where he had a second heart attack and Flatlined. Thank God the doctor didn’t give up on Dad and he came to after 11 electro shocks. After that he had a triple bypass, a stent, and a defibulator put in throughout three surgeries, within the same week. He was subosoed to make a full recovery but he was still pretty weak. Because of a blood clot in his somach that caused issues getting blood to his leggs on top of a bad hip. That didn’t stop him from being as active as possible.
Then in 2018 he developed strep / cellulitis in his foot which turned into a some sort of vasular ulser. It took most the skin off the top of his foot almost causeing him to lose his foot. I won’t share the pictures I have here but possibly in a book in tbe futer. It was pretty gross at some points.
He became bedridden, all the doctors said there was nothing they could do that he should just prepare for the end. We had nurses and physical therapy coming several times a month. It really tested our faith. Dad had blood poisoning three maybe four times. He was on several antibiotics non stop. We didn’t give up tho, we kept praying!
After months of his foot getting worse we finally went to see a second doctor who wanted to do a bypass surgery in his legs even though everyone insisted it would be a lost cause. They they proceeded to do the bypass surgery in his legs, they were pretty sure they would still have to amputate his foot later tho. But we kept praying and standing on the word of God. When reading the Bible out loud to him we came across a verese that we know God gave us for the trials we’ve been facing….
We claimed that over him and stood in faith. They kept insisting that his foot had to be taken, and maybe more. The day before the sugery, which we didn’t realize was scheduled they heard blood flow. So we asked them to push the sugery back and they agreed to push it back three days to see if there would be enough blood flow to save his foot. After the second day they canceled his sugery and he started a treatment that they use for burn victims. Called mist therapy.
After a month of treatment his foot was well to come home. I took him to a burn dr three timesca week untill he was well enough for a skin graft. When they did his first graph they also had to remove a some of the bone in his foot and big toe due to it being infected. But nothing to major. His first graph was promising tho not perfect but he needed a second one from his own skin from his thigh. Tho painful for sure he made a full recovery after almost a year of stress, fear, anger and pain!
Don’t Give up hope for a miracle. It may take a while, and may not come about the way we wsnt. But God is a Good! He is a loving father who gave us his son Jesus.
Don’t Give up hope and be strong. We may not understand the path we are traveling but it will be a path that will make a difference. 😀 God brings good out of all bad situations. I truly believe that and I fully trust God.
My dad never gave up, and he’s better, znd more active now tgen after his bypass surgery in 2015. He is one of my biggest heroes and I strive to be more like him.
God bless you today and always!
💕 Amy Jane Sandberg