Firstly, I did a faith Video blog just before my doctor’s appointment today for those of you who are interested.
Good news is everything seems good except but my blood is good so far. As I mentioned before because of the new medicine they are concerned about my PT/ INR levels. (A prothrombin time (PT) is a test used to help detect and diagnose a bleeding disorder or excessive clotting disorder; the international normalized ratio (INR) is calculated from a PT result and is used to monitor how well the blood-thinning medication (anticoagulant) warfarin (Coumadin®) working to prevent blood clots and strokes. My blood has been too thin. Which can cause internal or external and excessive bleeding, especially if I get injured.
If you are not taking blood-thinning medicines, such as warfarin, the most normal range for your PT INR is “0.8 – 1.1”. My level range to prevent stroke should be between “2.5 -3.5”. However, it has been ranging between “6.4 – 10 something”. The finger prick machine only reads up to “8 or 10” on average. I was as high as “12” in the hospital. Another thing that complicates issues is I’m allergic to heprin/wafarrin. That means if I’m given those my blood clots right away. It is super rare so I’m told, but it is also hereditary. Dad is allergic to those too. But at least he doesn’t need them like I do. I have to have Coumadin / lovanox shots only.
Having taken that into consideration they told me it was better to have high INR vs low while testing for my new meds. Since I’m specally complicated they decided to put me on Metropol like my dad. What I can be on is extremely limited because of the blood thiner allergy.
I am home and have been home from the hospital for three weeks now. It has been two weeks since they changed my dose from 25mg to 50mg. The only options to thicken my blood are:
🔹️1. Take a pill that costs me up to $600.00 out of pocket since my insurance won’t cover it.
🔹️ 2. Go get a vitamin K shot at the Emergency Room. Which may take a couple hours.
🔹️3. Eat things with vitamin K in it. All theses years I knew certain foods were good for thining, and thickeing tbe blood. I just didn’t realize there were two types of vitamin K. (https://www.healthline.com/nutrition/vitamin-k1-vs-k2) . For example, Spiange would be a great source of the right Vitim K. Yay! That also saves me a ton of money which I am quite limited on right now.
🔷️ My Doctor decided the shot was Would be dangerous, it may thicken my blood too much. He decided to have me to hold off on taking my medicine for a few days and eat some spinach (I Love Spinach!!! It is my most favored Veeige, no Joke!) and to be re-tested Monday… So that is the plan!
Also For those of you who also follow Deeply Rooted in Him and our Vlogs, I also did a new post there. http://deeplyrootedinhim.net/2019/08/11/that-did-not-go-as-i-planned
Besides all that medical stuff I am really cleaning out my apartment, catching up on my writing, my paperwork, websites, blogs, and Youtube channels… I have a lot to do but it is getting done. I am glad to be alive and getting the chance to continue working on my dreams and goals even when faced with trials and setbacks. I can not begin to express my gratitude to all of you who support me and encourage me and stand by me despite all that!
╰ღ╮ Amy Jane Sandberg╰ღ╮
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╮
It has been a while. I know I missed you. Did you miss me? I have been taking a break from the online world for the most part. Other than some side projects, which I will get into later. I have been really bad and been on facebook more than this blog. I have a lot of backdating to do. (meaning I need to move things I wrote here.) Let us be real. There is a lot I need to update and change here and elsewhere. I know not everyone uses Facebook, Instagram or social media. Thus, I will be working a lot on that and my books.
Moving on to the point of this post, I did a vlog! A video blog… I have been practicing with a side project which I will tell you about next time. Right now tho I would like to share this with you. This came from my heart and was really personal. It took several tries to finish and I was really nervous. Here it is from the other blog and ministry I am doing with people:
Every year or on my other blog I reflect on my life and I write about the growth I have been through. This year I decided to do something different based on the ministry we are getting off the ground. I did my third official Vlog, where I am on camera speaking to you all. I was really nervous. I pray that me stepping out in faith really bless you all. I love you! You Matter! Don’t forget that…
Here are the references she mentioned in the video.
✞ John 3:16 For God so loved the world that he gave his one and only Son, that whoever believes in him shall not perish but have eternal life. (New International Version)
✞ Hebrews 13:5-6 Make sure that your character is free from the love of money, being content with what you have; for He Himself has said, “I will never desert you, nor will I ever forsake you,” so that we confidently say, “The Lord is my helper, I will not be afraid. “What will man do to me?” (New American Standard Version)
✞ John 10:10 The thief cometh not, but for to steal, and to kill, and to destroy: I have come that they might have life, and that they might have it more abundantly. (King James Version)
✞ John 10:11-12 “I am the good shepherd. The good shepherd sacrifices his life for the sheep. 12 A hired hand will run when he sees a wolf coming. He will abandon the sheep because they don’t belong to him and he isn’t their shepherd. And so the wolf attacks them and scatters the flock. (New Living Translation)
✞ Jeremiah 29:11 For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future. (New International Version)
✞ Psalm 37:4 Take delight in the Lord, and he will give you the desires of your heart. (New International Version)
✞ 2 Timothy 2:1-2 You then, my son, be strong in the grace that is in Christ Jesus. 2 And the things you have heard me say in the presence of many witnesses entrust to reliable people who will also be qualified to teach others. (King James Version)
╰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╮
Let’s see…Today I:
1. Ran errands.
3. Cleaned House
4. Spent time with my Love.
5. Spent quality time with mom.
6. Read emails.
7. Worked on a book.
<I think I’m starting to get the feel of my mac>
8. Made important phone calls.
9. Did some PR.
10. Cleaned the apartment some…
I feel accomplished….!
╰ღ╮ Amy Jane Sandberg╰ღ╮
Talk about an adrenalin rush!! I just cleaned out my office ( for the most part) in under an hour!!! Along with unpacking 3 boxes, dishes, sweeping, and watching an hour show!! I got more done in this hour then I have had time to do in weeks!!! Do you have times like these too? It is so amazing how much you can done when you work like that. Yet it happens; I moved so fast. I felt like the woman from “No Ordinary Family” with her super speed!! Seriously, WOW! If I had a before and after picture of that room you would be amazed.
It seemed like; Every time I started working on just that room, something would always come up… Good thing, my aunt and uncle surprised me and are coming in the morning!! They will be the first relatives to see my house besides my baby sister, and my parents since I moved in… I though I had more time like til the end of the month when my Nanna and Baca (grandma n’ grandpa) are coming; and soon after my boyfriend early October . Good thing I started doing the other chores yesterday and this morning. My house has not been so clean since my sister visited. It is not hard to clean but I was pet sitting and and not putting things away, not folding, kind of adds up ;p
I am glad they are coming. I meant to sleep but didn’t wanna leave the main stuff for morning.. Now I just have lil things to do… shower, and clear off dining room table, and hopefully finish folding the clean cloths ( in 3 garbage bags…) That is the chore I hate most! folding, boo! I don’t have a dryer, it is in the lease that the washer and dryer belong to the land lord. Even if I could get one I can’t afford one, so thankfully I can wash my stuff at my beloved parents house not to far from here. God is so Good!
In the last 8 months I have really leaned to treasure the little things, the pleasure of a shower, a cozy bed to sleep in at night, a vehicle to get around, doctors, pots n’n pans, dishes, silverware, hot water, soap, loved ones, a helping hand, patience, joy, health, food, internet, a phone! Praise God I have them! After living out of a suitcase for 5 months travling back and forth from family homes, it is so nice to have a place to be proud of, a place God has blessed me with to keep me safe, and where I can share my time with people who are important to me!!
I had this whole other blog I was gonna write, but it will have to wait till latter, sleep has finally come and now I am saying good night! God bless you, and take time to remember and treasure the people and little thing in your life that are important.
I am so sorry I broke my word.. Life keeps throwing things at me. The Devil is cruel.. However not all the recent events have been bad.
* My Nephew is now 8 moths!
* More Family Time.
*It has been freezing so = More outdoor Activities
*I needed a break from the computer
* We lost a dear Cat after 14 years.
* My Cozen lost his newborn to heaven
*Word 2007 needed an compatiblity Pact
*Net was down for a bit
Moving on, I got the site up for my comic. http://anovelife.wordpress.com
I downloaded and installed the Word 2007 comparability pack. I started 3 more blogs >.<;; All for good reason and personal reasons I may explain latter. And I will link at a better time.. I am going out of town next weekend for a Dr. Visit. My cardiologist is wonderful, but is is a trip to see her. ❤ It will give me a much needed break and some thinking time. Plus work time for my books. I will work on keeping my word and post stuff in two weeks.. I am truly sorry for the delay but thats life..