Severe – Open Heart Surgery

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I saw the pulmonologist and ended up getting a right heart cath too, and everything came back normal. The 6 min walk test, right heart cath, VQ Scan and PFT. The only abnormality was the echo as always which they considered actually only Moderate instead of Bordering Severe. In the end, I don’t have lung problems at all. We tested for sleep apnea and that was negative, and we tested for Lupus.

My ANA lupus test was negative when I was at my PCP, but with the pulmonologist test, it was positive. Other testing for Lupus and autoimmune diseases such as vasculitis, scleraderma, etc all came back negative, so it may just be a false positive. Other than that, I didn’t learn anything new.

2 weeks ago, I came down with pericarditis again. At this point, I know when I’m going to get it before it happens. When I lay down, the left side of my throat has a weird sensation, and then 2 days after, my chest will suddenly be in excruciating pain and it radiates to my shoulders, in between my scapulas and up to my neck. Hopefully I can start the medication now right when I get that throat feeling and I can avoid the ER again.

The pericarditis went on for a week and a half, and it just so happened to be the week I started my new job! Just great! I did work while I had pericarditis and I feel like maybe that is why it took so long to heal. My WBC was high again and I’m just hoping this is just normal pericarditis and not because of an autoimmune condition.

I had an echo last Thursday and followed it up with electrophysiologist since I already had the appointment scheduled. My holter monitor showed that I no longer has Inappropriate Sinus Tachycardia, and I was told the beautiful news that if it did come back, the medication Ivabradine is available in the US now!

But the good news stopped there. My tricuspid valve is worse, regurgitation is past severe now, the right atrium is moderately dilated, right ventricle is mildly dilated and now my mitral valve is showing regurgitation. He told me I’ll need to have open heart surgery

Being told you’ll need open heart surgery is really hard, and I’m surprised I didn’t cry right there in the office. I was very shocked.

I have an appointment with an adult congenital heart specialist who was suppose to keep trying to find the cause of my valve disease or officially diagnose it as primary tricuspid valve disease, but now it is looking like she will help me with where to go for heart surgery.

It isn’t something I can avoid. I’m frustrated, I’m 22, it’s not fair.

I also have to come to the realization that I may not be able to have kids.

I know for a fact I can’t have kids right now with the heart valve being severe, but it is looking like the chances are very slim even after heart surgery because of the medication you have to take afterwards.

It’s like I was being told I had cancer, and I don’t want to downplay cancer because that is just as hard and worse that what I’m going through, but I feel like it would have been easier to cope with. I’m getting surgery and we still have no idea where we are heading or why this happened and how we let it get this far. With cancer, they at least have an answer and a treatment plan. At this point, we are just winging it still, marking out more and more things it’s not.

I cry every hour now it seems, it’s very hard to take in.

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Bordering Severe. Continuation Of The Heart.

I feel as though it has been a while since I have updated on here.

I got the CT in February, and everything came back normal as far as my lung arteries showed. I have not seen my electrophysiologist to talk about these results.

2 weeks ago, I started having chest pain, it was gradual and then got very severe. I tried to put it off as nothing serious, maybe just some muscular pain. I ended up driving myself to the ER at 2AM because I woke up in intense pain and I felt like I was drowning. My WBC was very high and my D-Dimer was too, which is an indication for a pulmonary embolism. They did another CT, and again found nothing and ruled out a PE. I ended up with the diagnosis of pericarditis caused by a heart infection which they told me is common for someone who has had pericarditis before and for someone who had heart valve disease. The medication didn’t work and I ended up in the ER again. New medications helped and I was better within a week.

I had to see a cardiologist immediately and my EP couldn’t get me in, so I found a new cardiologist. He evaluated me, I no longer have pericarditis. The stress test came back normal(No more IST!), but the echocardiogram came back worse than it did in December.

Last year in June, I was diagnosed with a mild tricuspid valve regurgitation. I was told it was most likely nothing to worry about and we only concentrated on my heart arrhythmia. In December after my heart surgery, it showed that it had progressed to “Moderate, EF 60%” and I had significant enlargement on the right side of my heart compared to June. This echocardiogram came back “Bordering Severe, EF 50-55%” and more enlargement on the right side of my heart. Valve surgery is becoming an option now along with heart failure becoming a worry due to the lowering ejection factor which is trivial.

So something that I was told not to worry about and to not venture further into any reason is now becoming a determining factor of whether I get open-heart surgery or heart failure. I absolutely hate my ex-cardiologist for all that he has delayed in my treatment. I’m 21 and I feel hopeless right now. Whatever this process is, it is happening quick and I can’t do anything until we find a cause.

A majority of heart conditions have been ruled out, so now they are thinking I have lung problems that are severe enough to be backing up into my heart and causing it to work too hard. I have to see a pulmonologist June 9th and have another Pulmonary Function Test, a VQ scan(where I inhale radiation and see how well my lungs exchange oxygen), ANOTHER echo, and a 6 minute walk test.

I have a physically demanding job, I’m on my feet all day, and if you saw me, you wouldn’t once think I have lung problems. I have no trouble breathing at all, so I’m not quite sure there is even a problem with my lungs. My last PFT came back normal, the CT angio chest came back normal, and my pulmonary hypertension is MILD.

The only other reasons I was told to look into is to get tested for Lupus, and possibly sleep apnea.

I just know there is something bigger going on. I feel like my time is running out. I wish doctors would listen to me. I’m trying to connect puzzle pieces like how my venules are swollen, my red blood cells are large and unusually shaped. I tried to push for a bone marrow biopsy last year, but I was told that I don’t need to worry about it. I’m sick of ‘Not worrying about it’! I already did that and now look where I am!!!

I’m very emotional right now.

2.5 Months Post Op Sinus Node Modification

Hello again!

My last post was a little discouraging and I think I jumped the gun pretty soon.

Around this time, my heart should be healed up for the most part and my HR is completely normal.

A good example of this, I ran for 5 minutes and ended up with a HR of only 120. Normally, it would be 170. Then I sat down immediately and less than 30 seconds, my HR shot down to 68! Normally it would take 5 minutes just to get down to 95.

I’m super pleased so far with this procedure. It has changed my life. I still have some bouts of arrhythmia with random spikes to 130, but my heart corrects itself very quickly.

In a week, I continue with my heart journey and tackle my right sided heart pressure problem. I’ll have an angiography CT of my chest to see the vessels within my lungs and heart to see if I have any blockage that could be contributing to my possible heart failure and valve deterioration.

I have dumped my original cardiologist after he would not give me the CT appointment. He kept telling me that the IST was probably the reason I had right sided enlargement and a bad valve and that a few months, I’ll be back to normal. Refusing to do any type of test in the meantime. I consulted my electrophysiologist about this and he disagreed that IST could contribute to right sided heart failure and he offered to be my cardiologist and help me with that aspect of my heart.

My EP is jumping on this by giving me the CT and determined to find the cause so I don’t end up with more damage to my heart. Waiting will not help in this situation if we don’t know the cause. I’m so happy to have this EP, he’s been a blessing in my life and with my heart journey.

Overall, the journey is not over, but I’m happy there is significant progress and I have met so many wonderful doctors through all this. I’m so happy with the progress of my arrhythmia, and I know there is still more to be done with the right side of my heart, but with these doctors, I feel confident that I will come out ‘okay’.

With my original cardiologist, I felt crazy, he didn’t believe my IST or my concern for my right sided heart pressure/enlargement WITH a prolapsed valve. He made me feel like my worries weren’t substantial enough to get treatment and that it wasn’t ‘that bad’.

It’s so important to find a doctor that you can trust and encourages you to be proactive and vocal with your conditions.

Post Op 3 Weeks-5 Weeks after Sinus Node Modification for IST

In my last blog post, my heart rate was running about 85-90bpm and I want to make it clear that when I write, I am laying down in bed, so it’s a little concerning.

I wanted to be a success story, so people wouldn’t be terrified of the surgery. I wasn’t scared at all because I had the best doctor. I mean nothing could go wrong!!

Well after 2 weeks and when all the pain went away, I noticed a few palpitations, which I will say is suppose to be normal after surgery. You’ll feel the palpitations, but your arrhythmia should not be occurring. It started with every other time I would get up I would feel the palpitations and pay no mind to it. I stopped monitoring my heart. I felt like I was also having double heart beats and a pause which is normal also.

I went grocery shopping around week 3 and I felt the palpitations increasing around this time. In the middle of grocery shopping I monitored my heart rate again to curb my curiosity. My heart rate was 135bpm. I wanted to cry. It wasn’t anywhere near how my old self was which would have been around 150-180bpm, but it still wasn’t normal.

I was told tachycardia could happen for a month or two after the ablation, so I went home and I laid down for a while and took my heart rate again. It was ~85bpm. I cried. I just went through all that to have the same symptoms as IST just 3 weeks after???

Although it wasn’t 110% the same. Before the sinus node modification this is how my HR was:

Walking up stairs: 180bpm Walking: 150bpm Standing: 130bpm Sitting up: 110bpm Laying down: 90bpm

After the sinus node modification this is how things are going almost a month after:

Walking up stairs: 140bpm Walking: 120-135 Standing: 105bpm Sitting up: 95bpm Laying down: 80-90bpm

It is a considerable difference, but I wish the walking aspect was better. I really did feel my best energy-wise the first 2 weeks of surgery. Standing with a HR of 85bpm! That felt incredible!! I also felt like I was breathing better which probably benefited my pulmonary hypertension too!

I’m back to my coughing and breathing problems(which I really never thought were so bad until I was allowed to breathe so wonderfully).

Now I’m tired again after walking, not as tired, but still tired. I don’t know. I don’t want to discourage anyone. They did not have a successful ablation with me, I think I mentioned that. I had one spot of dysfunctional tissue that they could not completely ablate due to the risks, but they did get it to 110-120bpm, so I thought I would at least get below that for when the arrhythmia occurred, but that may be not how it works.

I also have not been okay’d to work out yet, so working out could potentially help my HR lower too.

I, again, want to make it clear that my ablation was not complete. I did have a spot that they could not get to due to the circumstances of it being too deep in the tissue and the phrenic nerve laid right over it, almost engulfing it(which could be why I cough so much when my heart races).

I have my 6 week follow up on January 20th, so we will see what he thinks.

Post Op Day Two-Two Weeks of Sinus Node Modification for IST

Tomorrow will be a month since my Sinus Node Modification for my Inappropriate Sinus Tachycardia. My HR is 89 beats per minute right now, which I will discuss in my next blog entry.

Day Two after the surgery and still in the hospital, I was extremely doped up on Morphine. My nurse didn’t know much about cardiology and had a hard time understanding what happened to me, so it didn’t help. I was still continuing to cough up mucus and don’t you dare touch my left side or I will punch you.

I was walking fine, but not long distances due to shortness of breath with the swollen heart. They kept trying to measure my urine with a cup in the toilet, but being doped up on Morphine I would just take it off before I went, so they never got to measure my urine. I got lectured a few times, but hey, you put me on morphine so.

They did a final echocardiogram and I had very little blood surrounding my heart, so I was good to go! Unfortunately they told me that the right side of my heart is enlarging and the pressure is significantly higher on the right side which is concerning for right sided heart failure. I am always filled with surprises with every visit it seems…21 years old and heart failure is a worry.

They loaded me with some more morphine before we left for our 5 hour trek back to Dallas, which I am grateful for. They also gave me another pain killer that would help me fall to sleep for the car ride home since it was hard for me to sleep and find a comfortable position.

I got dressed and thankfully I brought my own pillow. They wheeled me down to the car and I squeezed the pillow tight against my chest, it was the most comfortable I could get with all the movement. Pillows were fluffy heaven for me. The car ride home I was passed out and in bliss on pain meds.

The pain meds that I was prescribed for afterwards were not morphine unfortunately. They prescribed me Ibuprofen, yup, you heard me. They gave me the really good stuff then just snatched it away from me and gave me ibuprofen! I was also on ‘Colcrys’ which is a medication for gout, but they were using it for its properties of anti-inflammation. I used each medication for maybe 2 weeks.

By the time the morphine wore off I was in LOTS of pain. I could only take 800mg of ibuprofen at a time, but I wanted to down the whole bottle. The ibuprofen barely touched the pain. I still couldn’t eat, so I stuck with Ensure, Jell-O, and pudding for 2 weeks.

I was having a hard time sleeping on my left side and also laying flat made me feel like I was drowning because of the fluid in my lungs and the swollen heart.

I slept sitting upright with a pile of pillows set up to help me, but in the middle of the night I always woke up with pain and needing to cough up the fluid. I was sitting on the ground with a bowl of mucus crying at 2 in the morning screaming to my SO, “I don’t want to do this anymore!!”

The first two weeks were overall hell. I had the most energy since March because my average heart rate was 65bpm and standing up was only 85bpm, but I was in too much pain to do anything! I recommend grocery shopping beforehand because even after one week, I tried to go to Chipotle and walking to the line sent me too much pain that I almost passed out.

I learned to finally not lay on my left side. I couldn’t look at my incision sites except my neck because they were indented while they were healing, ewww! Hot showers were not a thing because they made me feel like fainting. But in 2 weeks, I lost 15 pounds! 139 to 124!

I finally started feeling no more pain after 2 weeks and I could finally lay on my left side and eat food!

Thanks for reading! 🙂

Post Op Day One of Sinus Node Modification for IST

Right now my heart rate is 61 beats per minute post op day 7 writing this.

I had to stay the night after my epicardial ablation for Inappropriate Sinus Tachycardia since they had 1) Ablated my heart and 2) Put the chest tube in.

So I woke up in a really doped up daze, my mom and grandmother showed up around 9AM and brought me breakfast from the St. Davids cafeteria. I would say make your breakfast arrangements clear BEFORE the surgery because I apparently told them I wanted an omelette with green peppers which is something I never want to eat to begin with. Just a little FYI.

Unfortunately, I didn’t want to eat. Eating made me feel sick. From past experience with another major surgery(spinal), I swear that eating, drinking and walking is what makes you feel better in the long run. So I stuck with jello and water and forced myself every so often to try.

I think around 11AM is when the pain started to hit right in my rib cage and where the chest tube was coming out. A guy came in and took my echo to check to see if I still needed the chest tube or if most the fluid was gone. I was, then, cleared to get the chest tube out.

Lovely Dr. Burkhardt came and took my chest tube out. They had to take the tape off, which hurt. Then the 2 stitches that kept it in place, which hurt even more. Then the TUBE had to come out, which felt like it was a never ending tube. It was the 2nd worst pain I’ve encountered in my life. I screamed, kicked, and didn’t help the process. I described the experience as giving birth to an alien out of your stomach. You can just feel the tube coming out the whole way, from your heart out from the incision. I hated the sensation and the pain. They patched me up and then the nurse took my urinary catheter out.

Thanks Dr. Burkhardt for having so much fun and laughter taking that chest tube out! In all seriousness, he was the one that I saw the most throughout the whole entire surgery experience and he is a great doctor that I think contributed a lot to the fixings of my heart. I’ve only heard great things about him by everyone that usually works with him.

I was in a PACU overflow region because the hospital was full, so there wasn’t much privacy and I tried to flip over to lay onto my left side. I succeeded in flipping over, but immediately regretted it as I was greeted by the most intense pain in my life and I started hyperventilating as I couldn’t breathe. This is because you’re heart is so swollen in the sac surrounding it and you’re heart lays to the left.

My nurse went to get morphine, but a nurse for next door immediately came in and literally picked me up and sat me upright. He, then, gave me a pillow, and told me to push it up against my chest as tight as I could while I was coughing and hyperventilating. This helped ease the pain by keeping my heart in place and cushioning it from all the up and down motions from coughing. He, then, told me to look into his eyes and breathe slowly as much as I could. I was crying and telling him in between coughs that I couldn’t do it, but I ended up feeling better within 5 minutes. I actually refused the morphine because the pain went away significantly and I preferred sitting up, I didn’t feel like I was drowning in my own fluid.

That nurse in PACU overflow was named “Dillon” and I wish I could have got a last name as he was such a great help in my recovery. Just because I didn’t have open heart surgery didn’t mean that I couldn’t use the pillow trick to hold everything in place. I would soon always hold a pillow up to my chest and it helped with pain a lot.

From my understanding, the usual is just an overnight stay and then you are free to go, and that is what we were told to expect.

Unfortunately due to the circumstances of my ablation, I did not get to go home after the overnight stay, and I had to get an inpatient room for another night. In the end, I’m happy we stayed another night, because the pain was unbearable, which I will write more about in later blog post.

We finally got a room and I was admitted inpatient. They would, then, check my vitals every 2 hours throughout the night. That night was hard. I woke up many times pressing the nurse call button because I woke up not being able to breathe.

Because I wasn’t taking in deep breaths after surgery because it hurt so much on my left side, I was accumulating fluid in my lungs, so I felt like I was drowning while laying flat. When I had a coughing fit, I coughed up a lot of mucus that I could feel from my lungs. I would sleep sitting upright after about the 4th time of not being able to breathe.

The pain meds were wonderful for the most part and they gave me a incentive spirometer so that I could expand my lungs and help loosen up the mucus. I used the thing maybe 3 times because I would barely get over the 500 part and I gave up. I wish I wouldn’t have given up and actually did the treatment every hour or so like I was suppose to because I would have came home in better shape.

And that’s it for post op day one, December 12th! Thanks for reading. 🙂

Day Of Sinus Node Modification for IST

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As I am writing this, I am Post-Op Day 5.

My Sinus Node Modification was December 11th, 2014 at St. Davids in Austin, TX with Dr. Natale and Dr. Burkhardt with Texas Cardiac Arrhythmia.

I am from Dallas, TX and only came to Dr. Natale/Burkhardt for the surgery aspect of my inappropriate sinus tachycardia only and only saw Natale before through a consultation in October of “Yup, we’re doing this, okay”.

I went to Dr. Natale for this procedure because my primary electrophysiologist did not feel comfortable doing this procedure with how little experience he had and with how young I am. I appreciate when a doctor will tell you that something may be beyond their expertise, and in the end, I am very happy he did.

I was the first case and arrived at Cardiology Services at the Main St. Davids at 5:30AM.

Went through all the paperwork, was welcomed into a room and told to change.

Completely naked, but a gown and a urine sample. They started my IV, took some blood, flushed the line and then took an EKG. The anesthesiologist, Dr. Rockwell and another man(who I can’t remember his name for the life of me, I’m so sorry) asked me many questions about conditions, blood, and my reaction to past surgeries. They were thorough in explaining the whole procedure and were honestly great.

I was then shipped off for surgery.

I had to sit on the ‘operating table’ and use my gown as a blanket as it would soon be removed when I was under the sedative. They put several stickies all over my back and chest, and then the sedative was given to me. They gave me a mask for oxygen and I said, “You mean quote unquote oxygen?” and I don’t remember anything after that.

I was told that being under a sedative, I would be somewhat conscious and may feel pressure in my thigh/groin area, and people talking, but not knowing what they were saying, but I honestly remember nothing or felt nothing.

The surgery was planned to be 2-3 hours long. They started in my right femoral vein, right at where the leg bends. They mapped my heart and was able to get my heart rate up to 170. My sinus node was the problem, but I had one area that was extremely difficult and “deep”. They proceeded with the epicardial portion of the ablation where they entered a catheter from under my sternum and went on the outside portion of my heart to move my phrenic nerve, that controls my diaphragm, with a balloon so they would not burn it. They ablated 2-3 areas and then tackled the major one. This one turned the surgery to over 5 hours long. They entered my right jugular and did their best to pace my phrenic nerve and ablate what they could. They got my arrhythmia down to 110-120bpm(Can’t remember), and did not want to continue further because of the continued risk of the phrenic nerve. They told my mom that it was a very challenging surgery, and that they did brutalized my heart with how deep it was.

I had 74.4 minutes of ablation.

I was sent to ICU afterwards only because they went through the epicardial route and I had a chest tube placed. The chest tube would help drain extra fluid and blood from the sac surrounding my heart that they had to enter through. It will stay there until an echocardiogram gives the doctor the OK to take it out.

Sinus Node Modification, Epicardial Ablation, Chest Tube

Sinus Node Modification, Epicardial Ablation, Chest Tube

Yes, I did have a navel piercing in the whole time and was only allowed to because it was 100% plastic. I started out 128 pounds before the surgery and 139 pounds after surgery thanks to all the fluid they were packing me with. I felt like a big balloon.

I ended up with a urinary catheter, and I had to lie flat for 6 hours after the surgery. I was so out of it, I barely remember anything except trying to kick my legs and telling the nurses that I couldn’t help it while they tried to hold them down. I was in no pain after the surgery because I was extremely doped up. I actually tried to get up a few times and made no sense as to why I wanted to get up. So the hours after surgery were great.

Thank you so much Dr. Andrea Natale and Dr. J. David Burkhardt at Texas Cardiac Arrhythmia in Austin, TX for treating my Inappropriate Sinus Tachycardia and although brutalizing my heart, overall fixing it for now.

My heart rate after surgery was around 75bpm. Normal blood pressure.

I’ll end this post with me(clearly the poster child of Sinus Node Modification), doped out after eating my strawberry jello 2 hours after surgery.

Post Sinus Node Modification with epicardial ablation for Inappropiate Sinus Tachycardia!

Post Sinus Node Modification with epicardial ablation for Inappropiate Sinus Tachycardia!

Almost Ablated!

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I am now 2 days away from my Epicardial Ablation for Inappropiate Sinus Tachycardia.

I don’t think it has hit me yet that I am having ‘heart surgery’. Again, I don’t want to say that, I’m having a heart procedure that will hopefully change my life.

Because of this procedure, I had to take my exams early and for the past 2 weeks all I’ve been doing is studying and everyone always asks me if I’m scared for this procedure. I honestly forget I’m having it done since I’ve just been studying until my eyes bleed.

I hate the question: “Are you scared?” I mean my dad had the balls enough to say the real thing, “Are you scared you’re going to die or lose oxygen to your brain and end up on life support?” Dads are great.

Luckily, being in the medical field, I know that it is an almost impossible chance of that happening, but hey, look at Joan Rivers or the girl who went brain dead through a tonsil surgery.

I will be ‘awake’ during this procedure, but highly sedated, so I am one step above them. There is a 30% it won’t take and they will have to do other methods such as going through my femoral vein and go straight into the heart. That’s the most common method, but can lead to scar tissue in the heart.

At this point, I’m not 100% positive which method they will be doing. My EP told me epicardial, but the nurse said the femoral vein. We will most likely know during pre-op or of course, during the surgery itself.

The main risks they have mentioned are a pacemaker or a paralyzed diaphragm. Apparently a nerve that control your breathing, the phrenic nerve, runs right over the sinus node, the place they are ablating. So if they burn the nerve, I could have troubles breathing. So I guess that’s a way to go brain dead.

Tomorrow we leave for Austin, TX from Dallas, TX and go to the pre-op appointment. Then my procedure is scheduled at 5:30AM Thursday, Decemeber 11th.

Luckily I’ve reached my $10,000 deductible for insurance, woot!

Thanks again for reading this little update 🙂

Inappropriate Sinus Tachycardia – Not SVT!

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Hi, I’m Kate and I’m 21 years old and I’m having heart surgery.

But I don’t want to call it heart surgery, because that sounds like some dramatic bloody mess where I have some high chance of dying or becoming a vegetable.

I’m having an epicardial ablation for ventricular tachycardia. But that’s not what it really is either. I’m having a Sinus Node Modification through a epicardial ablation for ventricular tachycardia METHOD.

At this point, you are probably wondering if I even know what they are going to do, and I’ll let you know, that no. No, I don’t.

So why am I having this procedure you may ask.

Disclaimer: I won’t be getting into what the Epicardial Ablation or Sinus node modification is in this blog post, I want to start with the condition that brought me to this.

Well around the time of March 2014, I started having an overwhelmed feeling every time I stood up. I, for some reason, thought it was high blood pressure. I bought a blood pressure cuff to curb my curiosity and what I found out was that I don’t have hypertension, but my heart was racing as soon as I woke up, stood up, exercised, pretty much anything that involved doing something. My heart was constantly in ‘tachycardia’, by definition over 100 beats per minute. My bodies definition, over 150 beats per minute.

So then I started this cool thing where I would faint, thankfully 99% of the time at home. The other 1% at Walmart where parents shovel their kids away from me and act like I’m a freak who enjoys falling on the ground. My cat was much more accepting at home.

So I was scheduled to see a cardiologist after about 2 weeks of this happening.

My tachycardia never occurred while sitting down, or laying down, so when the doc did an EKG and checked my pulse while I was laying down on a table, he saw nothing wrong and looked at me like I was crazy when I told him to check my pulse when I was standing (spoiler alert; he never did which made my diagnosis 2 months delayed).

He gave me the 24 hour Holter Monitor and scheduled an echocardiogram. Well I did the echocardiogram the following week and waited for him to give me those results along with the Holter Monitor. I had a lot of bouts of tachycardia throughout my Holter Monitor and was actually at 110 beats per minute laying down and doing the echocardiogram. It’s kind of like when your car starts making a funny noise, but when you take it to the mechanics it won’t make the noise anymore and you feel stupid. So I was happy that I was able to prove something at this appointment so I wouldn’t feel like this was all in my head.

He wasn’t too concerned about the tachycardia because SURPRISE! Another heart problem appeared during the echocardiogram. I have a Moderate Tricuspid Valve Regurgitation. What the hell? So I had to schedule a transophageal echocardiogram to get a better look at the valve.

In the meantime, he wrote my tachycardia off as supraventricular tachycardia(and hinted towards stress and anxiety) until I saw an electrophysiologist who would end up doing more tests and believing me.

So I made the TEE appointment with my new EP who also scheduled a Table Tilt Test and a Stress Test on the same day at the hospital in May.

The end results were that my heart didn’t have an abnormal structure and that my valve was just prolapsed from a secondary cause, which we still don’t know because I haven’t done any more tests.

But SURPRISE! They found another heart condition! I have mild pulmonary hypertension, which is no big deal since I took a Pulmonary Function Test and that came back normal. And I have a Persistent Left Sided Superior Vena Cava. So I have a left and right sided SVC, which doesn’t tell us anything apparently.

With the Table Tilt Test, we learned that I have a mild form of POTS(Postural Orthostatic Tachycardia Syndrome) because my blood pressure drops when I stand up, but not significantly because I didn’t faint during the test.

But when they gave me adrenaline, my heart wouldn’t stop racing. Also during the Stress Test, within 2 minutes of walking my heart went to 180 beats per minute and stayed there until I laid down.

My EP diagnosed with me with Inappropriate Sinus Tachycardia, not SVT.

With SVT, you can go from 70bpm to 200bpm out of nowhere, and then reset back to 70bpm. There is no gradual change and your heart is able to correct itself. This is a problem in the accessory pathways of the heart.

In Inappropriate Sinus Tachycardia or IST, the usual average heart rate is 90-95bpm and simple things such as standing, walking, cleaning, cooking, whatever can make your heart gradually start to race and stay racing until you sit back down. This is a problem in your sinus node, the pacemaker of the heart.

Of course, having your heart race all the time, makes you feel like you ran a marathon every day and leads to a fatigued lifestyle that will never go away.

They gave me some beta blockers, Metoprolol, to slow my heart rate down with the side effect of lowering my blood pressure, but I suffer from hypotension, so I couldn’t take the beta blocker unless I wanted to faint or my blood pressure was normal. So they gave me some Midodrine to raise my blood pressure, but in return it would make my heart race even more and I was so sensitive to it that it would shoot my blood pressure up into hypertension, so each medication had a delicate balance and was hard to manage. Plus, they both made me feel way ‘fuzzy’.

As the months passed, I kept feeling worse. I found peace when I sat down to control my tachycardia, but suddenly sitting down didn’t help anything and my heart was 110-130bpm sitting down and worse standing up.

The midodrine doesn’t do anything for my blood pressure anymore so I am constantly in hypotension, so I can rarely take my beta blocker which only helps for maybe 3 hours at a time anyways.

I work in the medical field that requires me to constantly be on my feet, and if I’m with a patient, I can’t just sit down if I feel close to fainting or take a break. I’m lifting patients, holding them, running around getting stuff done and I was finding it to be extremely hard to keep up. When my heart races, I can’t think straight or concentrate on the task at hand that I’m working on with a patient.

I talked to my EP about this and how the medication does not help, he referred me to another EP who will now be doing my Sinus Node Modification in 3 days.

Basically he is going to burn a part of my sinus node that is causing my arrhythmia.

I’ll write another blog post detailing the experience because there isn’t much information out there about the procedure or the condition without it being too science-y. Thanks for reading this far. 🙂