Hello All, Me again!
Well, who else would it be? *giggles* I have good news. You can watch the video or scroll past and read below. The video is only about two minutes long.
My blood levels are almost exactly where they need to be… The Spinage did the trick and you could say my PT/INR was re-set. Now it should all be fine. I go back in two weeks to make sure. Woot!
Other than that I am still cleaning… Sadly – my place was a mess, but not worthy enough to be on one of those hoarder shows. You know what I am talking about right? It wouldn’t take me so long expert I am going through every little thing and throwing stuff away or setting aside for donations. Along with that, I am sorting through my computer files looking for lost books and stuff I need to organize again. While I take care of pets, run errands, update social media and of course write. I was sick for so long I am way behind where I want to be so I am working hard to catch up and making sure I am not overdoing it. I am not the night owl I used to be, as I get stronger I will be back in full motion. Keeping a smile on my face helps. Life is stressful enough… I wanna spread smiles not stress! I am working hard to stay positive but at times it is overwhelming.
I am an author by definition, how I live my life and how I treat it is like one would treat a book being written. Authors are people too. Just like actors and singers. I wanna keep it “real – down to earth” as some may say. I want to show you that no matter how hard things get. You can survive this and you are not alone!
Also, yes I believe in Jesus, I do not believe I would be alive if it wasn’t for him. LITERALLY! There have been so many close calls… I talk about my faith here and there, it is my blog/website after all. As a writer, it just comes out because it is part of who I am. Yet – I will not force my faith on you. I believe in Love. Love can make a huge difference! I believe Jesus died for everyone – no matter what race, gender, or choices you make. Jesus loves you. John 3:16 It is up to you what you do with that knowledge. It is not my place to tell you what to do. It’s your life and your choice. I do want to say tho – Miracles are real, You are loved, and you are not alone if you don’t wanna be. Someone asked me once what if Jesus and God were not real at tge end… I answered: “If they aren’t that at least I choose to live with hope and it gives me strength believing there is some out there with me and looking out for me. I do believe that they are real tho 💯.
For one- The Bible says in the book o John Chapter 1 verses 1-6 (NIV) 1 In the beginning was the Word, and the Word was with God,(B) and the Word was God. 2 He was with God in the beginning. 3 Through him all things were made; without him nothing was made that has been made.4 In him was life, and that life was the light of all mankind. The light shines in the darkness, and the darkness has not overcome it.
Furthermore, there’s evidentiary proof all around. My life is also proof. I am constantly profounding Doctors.
╰ღ╮ Amy Jane Sandberg╰ღ╮
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╮
Hey all! Happy New Year!
Out with the old and in with the New right? I don’t know about you but this year has been something dramatic novel! I feel as if a lot of what has happened the past few years has been surreal. Some great moments, among some very tying times. As if I was someone else watching my life as it happened. I can not at this time go into details of everything. In short Its been hard emotionally, mentally, and physically. My faith has truly been tested. There were times I thought I wouldn’t’t be able to handle it. Sometimes you are forced to make hard choices. I had to yet gain put my books on hold for various reasons.
I was surprised tho this Christmas when I received a gift from one of my biggest supporters. She gave me a Mac Pro laptop computer. It is not huge, but its is way more then I could have asked for or though to request. In return she expects me to publish some books this year. The wonderful woman is going though so much right now and yet she invested in me. I sure hope I don’t let her or any of you down. The Mac is so different from what I am used to. I do not have the programs, adaptor port, or mouse that I need yet. However, that will be rectified in a matter of days. From what I have discovered so far the Mac pro is amazing. This touch pad is great. I feel so bad, that still haven’t published any books since “God Supplies and Miracles Happen”. I have been without a computer for several moths. Plus Money has been extra tight. I feel truly blessed and completely surprised. I don’t feel worth it somedays. At times I felt I should give up… But then I am surprised you all still are here believing in me. I am truly humbled! I pray I can live up to your expectations and then some. I have an amazing group people in my life and a wonderful family. I want to remind you, God is bigger then the situations we are in. I sure pray this coming year is better for all of you. I love you all I am truly truly grateful! May this year bring you an abundance of blessings and open doors. God bless you today and always!😁
There was a massive fire only a street away from our house! It was super scary!!! It was started by a bad power-line. The flames ran up the side of the mountain and on to the bluff we live… It was defiantly life changing… Fear is powerful, it is brain numbing too at times… I rarely have faced a situation where I lost the power to think. I was mentally and physically frozen for a few minuets. So I prayed… Because that is what I do when I know not what to do, I ask God. And then I made mental notes of where the animals were, where what I needed to save was… I was faced with the reality. It is really interesting what really goes though your mind when faced with the question- There is a fire, what is the one thing you save? If the fire reached us, I would loose so many items, some collectors, none of them as important as the my family and pets… The first thing I thought of, was I have no pet carrier for the cats, what will I do with them? Let them outside to fend for themselves if it comes to it, animals are smart and they have instincts would they make it? No… I’ll try and wrap them in a towel put them in the car hope I don’t drop them on the way down… If I must I will… I told myself Then I quickly found my dog leash, and got her downstairs. (I live on a second story with stairs on the outside.) I kept a close eye on the fire. I have to say the Firemen were fast, brave and awesome! The news said we had only seven fire trucks, but I counted about thirty-three of all types.. There was even helicopters working hard to put the fire out!
I was about to pack up and get us all of us out of the house but then I looked over to the empty field next door and saw about ten deer peacefully eating grass and sleeping. After that I felt peace and I knew we would be safe. Just then the wind shifted and instead of blowing north it stated to blow west… Which was good! Soon after that They had the fire out near the homes, but the fire moved fast west… The poor firemen worked well into the night and into the next morning to get the massive fire out.
We were so blessed not to have any homes or people hurt in our small town. The firemen did an awesome job! God is so good! Sometimes still when I see smoke I quickly go over the emergency list I have prepared in my mind, what I need to do etc as i it were a natural reaction… Fear is a funny thing and very powerful… This whole thing was super scary but a great lesson of faith and a real test. One which I am glad we didn’t have to take!
♥Love ya, Amy Jane Sandberg