Here's an update on what's going on with me. I'll give a quick update and then a long one. Quick update: Been admitted to the hospital 3 times in 10 days, got my 4th and 5th PICC line, had a 5 hour heart procedure, then they shocked my heart, then I had a permanent heart monitor placed inside my chest. I am okay!
Long update: As I've mentioned before, ever since I got sick, I've had trouble with my heart. Nothing life threatening, but very inconvenient and uncomfortable. Ever since I've gotten sick I've had tachycardia. That means that my heart rate is a lot faster than it should be, even when I'm resting and laying down. I've seen a couple cardiologists and they've just said it's tachycardia and they put me on beta blockers to try and lower my heart rate and they haven't ever worked really well and sometimes cause more problems from the side effects. The cardiologists I've seen in the past haven't tried to find the cause of the tachycardia, they've just thrown medicine at me.
I've had several EEGs in the past year because of the seizures I've had. The EEGs detect electrical activity in your brain. On my EEG, it showed cardiac involvement. So something in my brain is being affected by my heart. This could mean that my heart is contributing to or causing the passing out episodes I have, and the seizures. After getting those results from the EEG, several doctors recommended that I go see a special cardiologist that specializes in Cardiac Electrophysiology and Pacing. They look at the electrical part of the heart and how that works.
I saw this special cardiologist almost 4 weeks ago and it was just what I needed! Praise God for bringing me to this doctor. Tachycardia is an electrical problem, so I don't know why I haven't seen a doctor like this sooner, but I'm here now! He spent lots of time with me and said what he thinks my real diagnosis is, even before all the testing. It turns out he was correct, that's how good he is. He had me wear a heart monitor for a week to see what my heart does. It confirmed that even on beta blockers, my heart rate is still way too high. One day I was laying on the couch and my heart rate shot up to 179bpm and the heart monitor company called my cardiologist's nurse to tell her and she called me to make sure I was okay. I was fine, besides the dizziness, chest pain, and being short of breath but that's normal for me since I started having heart problems. My heart rate goes higher than it should when I stand up also which makes standing for long periods of time very difficult for me. I have also developed a huge heat intolerance that seems to be related to my heart.
My new cardiologist ordered a Tilt Table Test and I did that 3 weeks ago. For this test, they strap you to a table, take your vitals laying flat, then they tilt the table up so that you're in a standing up position. Here is a good picture of it when it's tilted up.
The test lasts about an hour and you're in the standing position the whole time. The goal is to reproduce symptoms such as passing out, fast heart rate, and whatever other symptoms you're experiencing. My heart went up to 180bpm during the test and I was just standing there. I came so close to passing out but never actually did. This test also tests for POTS, which we have suspected that I've had since I got sick. POTS stands for Postural orthostatic tachycardia syndrome which is an autonomic nervous system dysfunction. The autonomic nervous system controls everything you don't consciously do such as blood flow, organ function, digestion, heart rate, and more. When I was fixing to do the tilt table test, we told the tech doing the test that we thought I had POTS and he said he's been doing this test for 12 years and has only seen 3 or 4 real cases of POTS so he said he didn't think I had it. After the test, he said, yep you have POTS.
The tilt table test showed us so much and after that my cardiologist gave us two options. It showed I have an arrhythmia that no one else had caught. The first option was to have me admitted to the hospital to be started on a new heart medicine for arrhythmias. I would be there for at least 3 days because they have to monitor you closely when you start the medicine. The next option was a procedure where they go into your heart to try and find the location of the arrhythmia and if they do, they would do an ablation which destroys that part that's causing the problem. I wanted to do the procedure because I wanted that chance of having it totally fixed and didn't want to add another medicine since I'm already on beta blockers, but because of scheduling issues, I couldn't have the procedure for over a month.
So Wednesday, May 6th, I was admitted to the heart hospital at 6am to start the medicine! They tried so many times to get an IV and couldn't, so they called the PICC line team and they put in my 4th PICC line. I had to stay in the pre-op and post-op area until a bed opened up upstairs so I was in that area until about 4pm that day. I had the BEST nurse in the pre and post op area. She has the arrhythmia and tachycardia that I have and was so sweet. She took such great care of me! I got my first dose of the medicine at 8am and soon got a horrible headache, got dizzy, and just felt weird. My doctors said I could stop the medicine but I wanted to keep trying it. I got another dose of the medicine that night and the headache got worse. Still, I wanted to keep going. Thursday my head kept getting worse with each dose despite being on 4 pain medicines. Again they asked if I wanted to stop the medicine. I said no. I wanted to give it a chance. Friday came and I decided not to get my morning dose because I was supposed to go home that day and couldn't go home with that bad of a headache constantly, so my doctor decided to take me off of the medicine since I was having bad side effects. I got to go home Friday evening and was upset that I couldn't tolerate the medicine. They said that just happens sometimes and everyone is different. The heart hospital I was in is AMAZING. Every time I called the nurse, she would be in my room in under a minute. My cardiologist and his PA are also incredible. When they were trying to get my headache under control and trying to figure out what medicines to use, the PA came to see me about 5 times in 4 hours or something like that. Also, the nurse I had in the pre and post-op area was so touched by my story, that on her day off, she tracked me down and called my hospital room just to see how I was doing! It almost made cry to think how much she cared! I gave her my blog, so if you're reading this, please know how much you blessed my life! God is using your caring spirit to help so many people! I want to stay in contact! I also had visitors each day and I am so thankful for those people! Here are some pictures from that 3 day hospital stay.
It rained so much while I was in the hospital and we saw these rainbows from my hospital room! It reminded me that God was with me and His promises never fail!
Kind of hard to see but it's a double rainbow!
My 4th PICC line.
One of my friends came for a late night visit and gave me this beautiful bracelet. It has an anchor, infinity sign, and the word hope!
"We have this hope as an anchor for the soul, firm and secure." -Hebrews 6:19
This is how long PICC lines are. This one is tangled up, but imagine this stretched out and it goes from the arm, up through the chest, then down into the heart. It's super long!
For the 3 days I lived with this icepack on my head for the headaches. It's cute, I know.
Taking care of my beautiful flowers
My mom loved my look so much that she wanted a picture of my heart monitor necklace and you can also see my PICC line by the crease in my right arm.
Again, I just looked so good that my mom had to get a picture. I'm holding my arm up to show my PICC line, which adds to the look. Someone called me the flying nun because of my ice pack? Do you agree?
I did well at home and even went to church that Sunday, May 10th, and went out to eat for Mother's Day! Side note- I have the best mom (and dad)! I wouldn't be where I am today without her. I love you mom!!!!
On May 10th, after we got home from church and lunch I was laying on the couch and felt my heart go into a weird rhythm and then I passed out. After, I was fine besides my chest hurting. Later that afternoon, I was outside playing with my dog Charli and felt my heart do that weird rhythm and I passed out again and woke up with more chest pain. My parents decided to take me to the heart hospital ER. When we got there, they were rushing in a 70 year old who had been in cardiac arrest and then the nurse told us he was post arrest which meant that he didn't make it. I silently said a prayer for his family. Then, the guy in the room next to me was getting his heart shocked to get it back into normal rhythm. We heard everything and even though he was sedated, when they shocked him, he yelled out. I had NO idea that a few days later they would do the same to me...I'll explain that later. Things settled down a little in the ER after that. So in the ER, they did all the normal tests and found that my heart rate was high despite the beta blockers I'm on. I was stuck at least 5 times to try for an IV and they couldn't get it so they had 2 special techs come in and do an arterial blood draw which involves taking blood from an artery when they can't get it from the vein. They couldn't even hit the artery with an ultrasound machine, but finally on the 2nd try they got blood. After all my tests the doctor really wanted me to have an IV so someone else came in and finally got a tiny one! It was so frustrating since I had just had my PICC line taken out 2 days before on Friday!
They gave me medicine in my IV to slow my heart rate down but it didn't work. The ER doc talked to the on call doctor for my cardiologist and they decided to admit me again and my cardiologist would see me first thing in the morning. They got me to my room around 1am Monday morning and they just monitored me and tried to help my chest pain. I had a sweet nurse who decided that at 3 am when she taking blood, that she wanted to talk to me about her private life. A very, very private part of her life. At 3am. And I had just met her at 1am. I tried not to call her the rest of the night except if I had to get up to go the bathroom because I wasn't sure what she wanted to talk about next! She gave me some medicine for my chest pain and thankfully I slept on and off until shift change at 7am. Besides telling me way too much, she was so very sweet! I haven't had a bad nurse or CNA (certified nurse assistant) at this hospital.
My cardiologist came in Monday morning and said he wasn't sure what caused those 2 episodes but that he wanted to start me on a different medicine to help get my heart back into a normal rhythm and lower my heart rate . They planned on having me stay another night to see how I did with the medicine. Then, later that day, my cardiologist came in and said that he would be able to do the heart procedure that Friday instead of the end of June! He was able to move me up! What an answer to our prayers! So instead of starting me on that other anti-arrhythmic medicine, I got to go home Monday night and not stay another night in the hospital! So I came home Monday, May 11th, so that I could have the heart procedure on Friday, May 15th.
The rest of the week I spent getting ready for the procedure. The plan was for me to go home the evening of the procedure. Here's what really happened. This is what I put on Facebook when I woke up Friday morning.
"I got 3 hours of sleep but God is holding me and I'm ready to conquer this procedure on my heart with Him! I have to be at the Heart hospital at 7am and it will start around 9. They expect it to last 4-8 hours. I will be somewhat sedated but awake through it. Please pray for my medical team and that they are able to find the problem and are able to fix it easily with no complications. Please pray for peace for me as my doctor said it would be an uncomfortable procedure. Please also pray for my family as they wait and support me. I believe that God will heal me and guide the doctors to find and fix the problem easily, but even if He has a different plan, I will STILL praise Him because as one of my favorite songs says "the storm may swell, even then it is well, and YOU are good". There is a possibility that they won't be able to fix the arrhythmia, but we're praying that they can! God can do anything! Thank you so much for your prayers and encouragement. It means so much to me and is so uplifting to know I have so many people that care.
"No, in all these things we are MORE than conquerors through HIM who loved us." Romans 8:37
"My flesh and my heart may fail, but GOD is the strength of my heart and my portion forever" Psalm 73:26"
Friday, May 15th, we arrived at the Heart Hospital at 7am for the procedure where they try to get your heart to go into an episode of extreme tachycardia to find where the arrhythmia is, and then if they find it they do an ablation to destroy that part of the heart and stop it from firing.
I made this and it has comforting verses on it and I took it to the hospital with me! I loved being able to show it to the nurses and doctors who took care of me!
When we got the hospital, the nurse who did my vitals and admitted me was the nurse that took care of me during my first hospital stay who has the same arrhythmia that I have! I was so excited to see her again and once again, she took such great care of me! Unfortunately she wasn't my pre and post-op nurse, but that nurse was great too and she had admitted me the first time! Those 2 nurses just switched roles! Both of those nurses decided to not to even try for an IV, but to just call the PICC line team. The lady doing the PICC arrived pretty fast and I decided to do it in my left arm. I've had 3 PICCs in my right arm and 1 in my left so that's why I decided to do my left. They use an ultrasound machine to put in the PICC and it usually only takes about 15 min or so. My mom got to stay in the room if she promised to wear a mask and not get too close! It's a very sterile procedure since the PICC goes into the heart. It's also called a central line. She got the PICC line up to my shoulder and then it wouldn't turn to go down into my heart. She worked on it for over an hour. The anesthesiologist came in and said if it works, just leave it like that since we were already an hour behind schedule for my procedure. It was in such a weird position and when they put medicine in, I could feel it come out of the PICC into my vein in my chest. Here are some PICCtures (get it??) from the procedure to put in the PICC line. None of them are graphic.
Trying to smile while she was putting it in!
She had me move my head a lot to get the PICC in the right place
Threading it through the vein
Taking an x-ray to see where the PICC was
Here is the finished product. My 5th PICC line
The doctors said the PICC line was okay even though it never went far enough down. They had me wear a bracelet that I've never had to wear before. It was my "blood band". Since they would be working in my heart, they said they had to have blood on standby and I had to wear this bracelet that has a lot of info about what kind of blood I would need. Praise God that I didn't need any blood during the procedure!
It had lots of stickers on it, I'm guessing to match it to the blood if needed
Getting me ready
After he realized he couldn't fix the arrhythmia, he told me he was going to put me back to sleep and shock my heart. I said wait a second! We never ever talked about this, I didn't know this was a possibility! I was so scared. I told him to call my parents and let them know. I don't know how that would have helped anything, but I wanted them to know. So the anesthesiologist put me back to sleep and they shocked my heart (Cardioversion) to slow it down and get it back into a normal rhythm. This was just a temporary fix. This is what my mom posted on Facebook after talking to the doctor.
Victoria did great through the 5-hour EP study; so proud of her! Being awake with wires in my heart is not on my bucket list, but she conquered it!! The not so good news is that the doc couldn't perform the heart ablation due to Victoria's arrhythmia being located too close to a nerve that runs to the diaphragm. So the docs decided to put her under and shock her heart. The heart shock will hold for a while but not long enough to help long-term. So it's back to the drawing table and back to trying another med. Thank you for your prayers! We will keep on keeping on!
I woke up crying (I always do after anesthesia). I knew they didn't fix the arrhythmia, I was in pain, and was just upset at the whole situation. When I got to my post-op room from the procedure, there were beautiful flowers waiting for me!
They were from my brother! That made me cry even more! It was so sweet, and there was a card and he had written something. He really is the best, most thoughtful brother. Look how beautiful they are!
I had to be on bedrest after the procedure for 4 hours but it ended up being about 7 hours of bedrest because of something that happened that required I not move for longer. My doctor came in to see me after the procedure and we discussed the next step. There are other procedures we can do where the nerve to my diaphragm would be moved while they do the ablation and then put back in place. Unfortunately these procedures are more invasive and they're also more risky. They would have to be done at a different hospital too. We don't have a plan yet on what procedures to pursue next to fix the arrhythmia but my cardiologist is looking around and we will look around the country too at different procedures. We've got to let me heal from all of this first though. My cardiologist then mentioned putting in a permanent heart monitor so that they could always see what my heart does without me having to wear those annoying external heart monitors and this one would last 3 years. So I agreed to that. He then joked that we should just put it in right then. Yeah, cause I hadn't been through enough that day! Since I was staying the night in the hospital, he said he could do the minor surgery the next day (Saturday) to put in the heart monitor. I said okay. He left and they got my room upstairs ready and I had the best 3 nurses taking care of me post-up. One stayed past her shift because she just wanted to make sure I was okay. They had to constantly check the 2 sites on my legs where they went into my heart to make sure they weren't bleeding a lot. They also cleaned me up and helped calm me down. I was really upset, but a lot of the crying was the anesthesia and pain. Also, let's be honest. Having a catheter in you from 10am to 10pm is just not pleasant. I had to have it because of the procedure and then the best rest after since I couldn't move.
They then took me upstairs to my room and it was a great room! Yes, this was my 3rd admission in 10 days and I knew what rooms were good and which ones weren't. I had lots of visitors when I got to my room and that made my day and distracted me from everything!
Here is what my room looked like! It was right by the nurses station which I like because you can eavesdrop on lots of interesting things.
At 10pm that night, I was able to get up and was off bedrest! I took a lap around the floor and then settled in for the night. They started me on a new medicine for my heart that is to help keep it in a normal rhythm. So now I'm on a beta blocker to lower to my heart rate, which he doubled the dose of that, and then the new medicine to help the rhythm of my heart. I slept well that night besides the normal hospital things that wake you up. At 7:30am Saturday, my day nurse came in and said they would be coming to get me soon for the procedure to put in the heart monitor. I had the best nurse that day! My doctor came to my room and talked to me about the procedure. I told my nurse that I was nervous about the procedure because they usually use 2 medicines to sedate for these procedures when it's not general anesthesia, and I can't have 1 of the medicines and the other medicine doesn't work on me. She said she would be waiting for me after the procedure to see how I did. Two OR nurses came to to my room to get me and they took me down around 9am. It was a maze to get to the OR and a lot of the hallways were dark because it was a Saturday. On the way to the OR, they told me the medicines they would be giving me and I told them that those medicines don't really do anything to me. It wasn't general anesthesia but they are supposed to give you enough medicine so that most people fall asleep from the meds. Again, I told them those medicines don't work and I couldn't have 1 of them. I don't think they believed me. They got all the drapes ready and my face had to have a drape over it since they were putting the monitor in my chest by my heart. They went ahead and gave me the sedation and pain medicine and I was still wide awake. My cardiologist was fixing to start when he realized he needed something else. By the time they got whatever he needed, the pain medicine had worn off and I was still wide awake. He started and made a tiny incision and then to get the heart monitor into my chest, he put all his weight on my chest which left me unable to breathe because he was pushing so hard. I was in tears and they had already maxed me out on all the medicines so they couldn't give me anymore, so I just had to lay there and take it. It was horrible. The nurses had to hold my body down because I was shaking from the pain. The procedure only took about 10 minutes, but it was excruciating.
They took me back to my room around 10:15am and my nurse was waiting for me, just like she had promised. The OR nurses explained that everything went well, but that I was in a lot of pain and was totally awake through it all. My nurse gave me my morning medicines (I couldn't eat or drink before the surgery so I couldn't have my normal medicines) and then medicines for the pain.
This is what the heart monitor looks like. I can feel it inside me which is kinda weird. This can stay in me for 3 years if needed. I have to carry a card with me at all times that says that I have a heart monitor
I have to have this blue device with me at all times because if I have symptoms or my heard does certain things, I press a button and hold it up to the monitor in my chest and it sends my heart rhythm to the doctor! It beeps once it connects to the monitor in me! Pretty amazing.
My cardiologist came to check on me several times because my incision was bleeding at a steady rate. It slowed down later in the day. He also just wanted to see how I was doing since it was traumatic for me. I realize that this doesn't compare to things that other people go through, but it was still painful and scary to be wide awake and all the medicines had worn off by the time they started the procedure. He said I could go home after I ate something and rested for a while!
I rested in my room but never went to sleep because I was so uncomfortable. My nurse kept checking on me and giving me medicines as needed. I had a couple of visitors which was great and helped cheer me up and distract me from everything. I wasn't hungry but knew I needed to eat before I could go home. I ordered lunch around 1:30pm and didn't eat much, but made it look like I did so I could go home! They had the best angel food cake with strawberries on it and I got that at every meal! So I ate that and some yogurt and pasta. Yes, I realized that getting cake at every meal isn't the healthiest option, but I was barely eating during all my hospital stays and that's all that sounded good!
I got to go home later that afternoon and have been home ever since! Recovery has been more challenging than I planned for since I ended up having multiple procedures instead of what was just supposed to be the one procedure to try and fix the arrhythmia. My cardiologist said it would take at least a week to recover from just the 1st heart procedure, and then to add the cardioversion and heart monitor surgery, that is a lot for me to go through in such a short time. It all happened in less than 24 hours.
One day last week I was lying on the couch with my blanket and noticed that my arm was on my favorite verse. I looked down and saw my hospital bracelets and realized that they remind me of how far God has brought me. It reminds me of all that I've been through, and how God has gotten me through it all by giving me strength, hope, peace, perseverance, and grace. I think that's why I keep all of my hospital bracelets. I look at them and see physical proof of God carrying me through this illness, through the pain, through the tears, through it all, never leaving me. I have hundreds of hospital bracelets from 7-8 years of this and each one represents a difficult time. But more than that, each one reminds me what I've overcome with God! He's never left me! I was also wearing this bracelet that I mentioned earlier that reminds me of the verse Hebrews 6:19- "We have this hope as an anchor for the soul, firm and secure". God is my anchor, hope is my anchor, grace is my anchor, peace is my anchor. I'm blessed.
So, to recap, I was admitted to the hospital 3 times in 10 days. The first time was for 3 days to be started on a new medicine to get and keep my heart in a normal rhythm. Unfortunately the side effects were too much and I wasn't able to stay on the medicine. 2 days later I was in the ER and was admitted again for high heart rate and passing out episodes. I was going to stay 2 nights to try another new heart medicine, but my cardiologist was able to move my procedure up instead of having to wait until the end of June. He had an opening and wanted to try and get my heart fixed. So I was only in the hospital for 1 night and about 24 hours and got to go home without starting the new medicine! 4 days later on Friday, May 15th, I was admitted for what was supposed to be the one procedure to fix my heart. They put in my 5th PICC line but worked on it for over an hour and never got it in the right spot but it worked and was ok. I then had the 5 hour heart procedure to try and find and fix the arrhythmia. To find the location of the arrhythmia, they made my heart rate go up to 250bpm and I had to be awake for about 4 hours of the 5 hour procedure. They found the exact location of the arrhythmia, but they were unable to fix it because of it's location. It's right where the nerve to my diaphragm is and fixing the arrhythmia would have caused damage to my diaphragm. They then decided to put me back to sleep and shock my heart to slow it down and get it back into a normal rhythm. I stayed that night in the hospital and the next morning, they surgically placed a heart monitor in my chest by my heart. I was able to go home later that day!
It has been a lot to go through. I'm doing okay though. I'm dealing with the reality that they weren't able to fix my heart and now we're looking at more medicines and invasive and risky procedures. I just want my heart fixed because it is causing a lot of problems. I'm not frustrated at God, mad at God, or blame God for any of this. I'm just mad at the situation. 7 years of this gets exhausting. But my hope, peace, endurance, grace, and strength all come from God! He had never left me and is using this for good. Your prayers and kind words have also carried me! I WILL praise Him for all He's done and for His promises that anchor me in the storm.
"You get glory in the midst of this
And You're walking with me
And you say I am blessed because of this
So, I choose to believe
As I carry this cross, You'll carry me"
Someone (city official) said something to me a couple of days ago that caught me off guard. He came to my house for something and asked about my hospital bracelets so I explained what was going on and that I had Lyme disease and he said "you're one of the lucky ones. You're still fighting and you're not dead". So yes, I am blessed to be alive today, blessed to feel pain because it means I'm living, blessed to be weak because it means I know what it is to be strong. I'm blessed. God has a plan for me.
These are lyrics from 2 songs that are especially comforting right now.
"I have unanswered prayers
I have trouble I wish wasn't there
And I have asked a thousand ways
That You would take my pain away
And I have asked a thousand ways
That You would take my pain away
I am trying to understand
How to walk this weary land
Make straight the paths that crooked lie
Oh Lord, before these feet of mine
How to walk this weary land
Make straight the paths that crooked lie
Oh Lord, before these feet of mine
When my world is shaking, Heaven stands
When my heart is breaking
I never leave YOUR hands"
When my heart is breaking
I never leave YOUR hands"
"I must confess that I still don’t get it all
Lord, I believe that all your words are true
Doesn’t matter where I’m going if I’m going with You
I press on, I press on, I press on
When I still don’t get it, I press on"
Lord, I believe that all your words are true
Doesn’t matter where I’m going if I’m going with You
I press on, I press on, I press on
When I still don’t get it, I press on"
Thank you so much for your prayers, visits, comments, texts, cards, and encouragement. It really does lift my spirit and make a huge difference! Please don't stop!
I don't know what's next for me, but I press on. Trusting God. Thanking God.
I'm unable to read too much Victoria. It looks terrifying what you're going through and as for the doctor's comment "you're one of the lucky ones. You're still fighting and you're not dead" - that must've be scary and relieving at the same time! Take care, I wish you the best in your recovery.
ReplyDeleteVictoria, you are such a courageous women of faith! May your faith continue to grow and shine through this journey. My prayer is through this journey you continue to grow in your commitment to God.
ReplyDeletePain is an attribute God allows us to have so we can understand what is good...you surely know pain...God is good. Continue to hold on to God (the good). As we all go through trails and pain in our lives may we be as brave and as faithful.
May God continue to richly bless your journey!!!