So I Guess I’m Going to Mayo Clinic?

On February 22nd, I had an appointment with my electrophysiologist, and in the end we decided I am going to go Mayo clinic. Instead of spending my first spring break of college somewhere on a beach, I’ll be in Minnesota going to doctor’s appointments. Somehow that doesn’t sound as fun.

I’ve talked about my Inappropriate Sinus Tachycardia before, and how my electrophysiologist believes I should have a surgery to try and correct it. I am currently on the last medication available for IST, and it has failed. My IST is much more severe than most people’s, and my doctor believes my only option is to have a complete ablation of the sinus node (aka they want to burn the shit out of my heart). This will most likely leave me with a pacemaker. At this point I’m not super convinced I want to have the surgery. For a long time now I’ve thought that I may have other autonomic issues on top of IST, and from what I’ve read if that is true this surgery could actually make it worse. This is also a very controversial procedure, and only two places in the country perform more than a handful per year, one of them being Mayo Clinic.

Back in October of 2016, I applied to be seen by Mayo Clinic physicians, and was rejected. They didn’t give an explanation so I have no idea why that was. I’m glad I’m going to be able to go, because to be honest the past three week have been really bad. I started to decline around 10 weeks ago, but it’s gotten increasingly worse in the past three. I’ve been missing quite a bit of school, and I haven’t been able to function at all. This has been a major leap backwards. My last round of quizzes did not go well, and I have two exams as well as a lab practical next week over information I was not there to learn. I am so incredibly frustrated and very sad. I’ve been here so many times before, but it doesn’t get any easier.

I worked really hard last semester and I did incredibly well in all of my classes. My health was pretty good, until the end of the semester, which was a huge blessing. Unfortunately this semester started off bad, and has only gotten worse. It’s so hard to constantly give your all in school, and not reap the benefits because your health sabotages you. Not to mention none of my professors ever respond to my emails, so I have no way of catching up while I’m gone. When I do try and study, I’m not retaining any of the information and can’t concentrate due to brain fog. I feel stuck and powerless.

I am really grateful that I’ve been accepted by Mayo Clinic, and that I got an appointment pretty fast. I’m hoping I’ll be able to see gastroenterology and maybe immunology while I’m there, but I haven’t heard anything from those departments yet. I’m also nervous to go, since I have always felt that if Mayo can’t figure all of this out, no one will be able to. I’m trying to stay hopeful, and positive that we may have some more answers sooner rather than later. I hope you are all doing well!

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November Health Update

Quite a bit has changed since my last health update!

I’ve now seen my electrophysiologist two more times, even though he originally wanted to refer me on. I went on flecainide acetate for a few weeks, but it made me incredibly hypotensive and I couldn’t properly function on it, so we decided to discontinue it. I’m currently on Digoxin, and my symptoms have improved. A major part of the improvement is due to coming off the flecainide acetate, but I do think the Digoxin may be helping some. I saw him on Monday, and we are going to continue to digoxin and possibly increase it, depending on the results of my endoscopy.

At my last appointment, he brought up the possibility of having another electrophysiology study, but this time actually ablating my sinus node. I didn’t have an ablation last time, because I don’t have SVT so technically nothing is structurally wrong with my heart. The complete ablation of the sinus node for people like me who have IST, a form of dysautonomia, results in a pacemaker over 50% of the time. To me, this would be a last case resort. I’m technically on the last medication that is prescribed for IST, so if it doesn’t continue to work I’m kinda screwed. However, I’ve read all of the research papers I can get my hands on and this procedure is often contra-indicated for people with dysautonomia. As of right now I don’t really view it as an option, but if things get worse it may have to be a possibility.

On Wednesday, I had an endoscopy mainly to test for systemic mastocytosis. I had no visible abnormalities, which we expected. This was my third endoscopy, so we were basically only doing it for the biopsies, which they did a ton of. The procedure went really smoothly and quickly. I had felt absolutely terrible on Tuesday, but even with the anesthesia I felt okay Wednesday. Thursday and Friday however were a whole other story. I felt like I was being stabbed in the stomach for most of Thanksgiving, and Friday I had a migraine most of the day. I tried by best to celebrate and push through, even though I felt quite terrible.  I’m moderately nervous for the results, since having systemic mastocytosis is kind of a big deal, but on the other hand having yet another false test is going to be frustrating. You really can’t win for losing with chronic illness.

I keep having really bad days/weeks and then really good days/weeks, so it’s been hard to judge the pattern of my health. I’m incredibly grateful for the good days, especially when they’re proceeded with a terrible day. I think I’m doing a pretty good job of handling it all, but I am pushing myself pretty hard. Having a few days off of school for Thanksgiving has been nice, and before we know it, it will be Christmas break. I still feel like I’m slowly declining, but I also feel hopeful due to the new doctors I’ve added to my arsenal.

How’s your health been?

I hope you’ve all been having a good November!

 

Gastro Appointment and Action Plans

I had a super busy week last week at school with quizzes, exams, and a lab for biology. I felt way less prepared for these tests than I did for my first round of tests, but luckily I actually did really well on everything. On top of all of the school stuff my health is continuing to spiral, and I’m having near syncope episodes where I become disoriented everyday, and they’ve gotten more severe.

One positive thing that happened last week is that I finally saw a new Gastroenterologist! I really liked him, which to be honest I wasn’t expecting to, since I saw two other doctors in that practice when I started to become chronically ill, and they thought I was faking it. He however, was very kind and had a few ideas on where to go next. He thinks I might have post-infection IBS, since I had some weird blood work five years ago that said I had a parasite. I thought this was a false positive since the parasite mainly lives in Africa, but apparently although possible it is incredibly uncommon for that to happen. If i did in fact have the parasite, then it may have damaged my GI tract causing the IBS.

I’ve actually never been diagnosed with IBS, even though all of my gastro symptoms fit the definition. He wants to do a few more tests before calling it IBS, since IBS really is just a nice acronym for “something in your GI tract is messed up but we don’t really know what.” I had some blood work and an x-ray, that I should be getting the results about at the end of this week. If everything looks good, we’re probably going to do an endoscopy since he thinks I might have systemic mastocytosis. I’ve done the tryptase test for MCAS, and it was negative but apparently the best way to diagnose it is by a biopsy of the small intestine, if you have gastro symptoms, or a bone marrow sample. Since I have a ton of gastro symptoms and doing an endoscopy is much less invasive than a bone marrow biopsy, we’re probably going to do that. If the regular endoscopy also fails to bring any good information, we’re considering a capsule endoscopy to make sure I don’t have any disease activity in the part of the small intestine that you can’t see during a colonoscopy and endoscopy.

If you missed my last update, I talked about how I tried corlanor for my IST and it really didn’t go well. This past weekend my doctor had me try it again, but now he only wants me to take it once in the morning every other day. I tried this on Saturday and it made me feel really crappy again, so I definitely won’t be taking corlanor anymore. The electrophysiologist also doesn’t want to see me anymore (even though I only saw him once) and is referring me to the research hospital that is attached to a med school in the city. His office has yet to send the referral, so I hope they hurry up since my heart is becoming quite an issue on a daily basis.

I’m sorry this is quite a Debby-Downer post, but it’s just reality at the moment! I am feeling positive about the new gastroenterologist and I’m hopeful that the referral for a new cardiologist will be helpful. I’ve been pushing myself so hard to make it to school, and get really good grades, so I know my blogging hasn’t been the best. Being chronically ill and being a student feels nearly impossible the majority of the time, so doing anything extra has been out of the question, especially the past two weeks. I’m hoping to post more regularly soon!

I hope you all are doing well!

Corlanor and Other Frustrations

Last week was the roughest week I’ve had in a while. My migraines have returned, my stomach has continued to be a hot mess, and my heart is becoming a major problem again. What a great mix!

I saw a new electrophysiologist on Friday, and he confirmed my diagnosis of Inappropriate Sinus Tachycardia. I was diagnosed with IST back in February after an electrophysiological study, but due to a terrible experience with that doctor I hadn’t done much about it since then. I’ve tried metoprolol, verapamil, and propanolol to slow my heart rate, but all of them failed to do so and caused side effects. Although I actually really liked this new electrophysiologist, he made big promises; promises he should have never made.

He started me on Corlanor, and told me verbatim this would be a miracle drug. As a skeptic with an asshole for a body I didn’t really believe him, but I was hopeful. I hadn’t done much research on IST, surprisingly since I love to research things, but now I have a million questions, most of which probably don’t have answers. Here are my questions, so if for some reason you have answers or have IST I’d love to hear them!

  1. Is IST a form of Dysautonomia?  The internet is giving me mixed signals
  2. What are other treatment options if beat-blockers, calcium blockers, and corlanor don’t work?
  3. How could this affect my laundry list of symptoms that no one seems to have an answer for?

Unfortunately my body is not liking the corlanor at all. My pulse is all over the place, sometimes “normal” around 75, and other times I’m still very much tachycardic at 120. It has also caused me to become extremely fatigued, hypotensive, and dizzy. Pretty much all day Saturday and Sunday I couldn’t do anything because I was so out of it. I started to get super disoriented (which does happen to me sometimes without medication) and couldn’t formulate sentences or comprehend anything I was trying to read. I’m on the lowest dose of this medication so I don’t think we can make this work.

I decided to stop taking it Sunday night, because I have a busy school week this week and I definitely won’t be able to go to school with all these side effects; It’s also not safe for me to drive when I’m so out of it. As far as I’m aware this is the last option I have to treat the IST, which is incredibly frustrating. I can feel my body progressively getting worse and returning to a dysfunctional state, which really scares me.

So far in the six weeks I’ve been in school I’ve only missed one class and it was for the electrophysiology appointment. I’ve been pushing myself incredibly hard and studying a ton, but if my health gets worse I’m afraid I’ll go back to missing school all the time. I just really don’t want to lose the progress I’ve made or have to leave school again. Maybe I’m thinking about this too much, but it’s really hard not to. We’re going to call the doctor today and see what he says about the side effects; I’m supposed to have a follow up on November 3rd, but it looks like I may need to see him sooner. I also have a gastroenterology appointment on October 18th with a new doctor, so hopefully that will bring some answers for my GI problems.

As for the migraines and daily headaches, I’m not sure I’m ready to go back down that road again. I’m feeling really emotional right now and the lack of control I feel over the situation is getting to me. I know that I can handle this because I’ve done it so many times, but honestly I just really don’t want to feel like like crap all the time and not be able to function. All I can try and do is hope that the electrophysiologist will have some ideas and the gastro appointment will go well.

I hope you all have a good week!

EP Study Update

I’ve began this post a few times but only ended up with jumbled words and a lot of tears.

It’s been a few days since I was discharged and the black cloud that was hanging over my head is slowly but surely starting to pass. I didn’t want to publish the posts I wrote in one of my darker hours because I didn’t feel they were helpful, encouraging, or good pieces of writing. I release now though that chronic illness isn’t always gonna be helpful or encouraging, sometimes it’s dark and sad and depressing.

I’m going to make this as short as possible so that I don’t bore you and I don’t have to think about it too much. So after that long introduction here’s what happened.

I arrived at the hospital at 9:45 and waited till around 11:30 to go back into pre-op. They had told us to be there at ten, but never told my mom when the actual procedure was scheduled. When we got back four different people over two hours tried to draw my blood and it was very stressful. I couldn’t have the EP done without the labs but none of the nurses or phlebotomists were good at drawing blood.  When we  complained that we had called ahead numerous times to warn them and asked for someone who was good at drawing blood to be on-hand my pre-op nurse said, “well it looks like we might just have to cancel the procedure if we can’t get any labs.”

She was an awful woman who was incredibly rude and made the whole situation a lot worse. When the fourth lady came in to draw my blood I started to get upset. I hadn’t eaten or drank anything in 18+ hours, I had less than five hours of sleep the night before, and I was having a hot flash which was making me irritated. On top of all that this lady tells me after waiting for hours they might cancel the procedure. I started crying, which is something I rarely do, and the fourth nurse who is looking for a vein notices. She responds with  kindness and sympathy, and then evil nurse #1 says. “oh, she’s just scared of the needle.”

This was when I just about lost it. I’m not afraid of needles and I had already been stuck three other times by incompetent people with no sympathy, yet not a single tear. The fact that she had the audacity after being so rude to act like I was being a baby and was “just scared of needles” made me wanted to scream. Luckily nurse four got the blood they needed and an IV, so things could started moving along.

Expect they didn’t. That’s when nurse #1 told us that my doctors current EP study isn’t going well and the patient coded. Not something you want to hear when the exact same procedure is about to happen to you. She said it should be two more hours and at this point it was 1:15pm. That was also the last time we saw her. She went home for the day and left us alone in pre-op with… no one. When someone came as overflow from post-op two hours later we asked them to call about my procedure and someone from the EP lab had to come get me since transport had gone home for the day.

I said my goodbyes to my parents and was brought into the EP lab which felt like some sort of futuristic room where they do experiments on people. It was also freezing and I was basically naked expect for the thin hospital gown so I started shaking, maybe that had something to with the fact it was now 4 o’clock and hadn’t eaten since 7 the night before but hey it was go time. A team of people started sticking things all over me and didn’t say much. One nurse was really kind and tried to tell me that everything was going to be okay, but deep down I knew she was wrong. I felt a weird combination of sad and numb as my body got my moved around and things stuck to it. I sat in silence as tears streamed down my face and in that moment I knew I had made the wrong decision.

I woke up from the study to hear nurse from the lab tell my post-op nurse that I had an electrophysiology study without an ablation. Those words rang in my ears and I began to cry yet no tears would fall. They found nothing. All day I had an overwhelming negative feeling and so I wasn’t surprised, just hurt and disappointed.

The recovery process wasn’t anything like I was told it would be. The scheduler told us that I would have to lie still for a few hours, but they weren’t very strict about it and if I had to go to the bathroom I could get up. This was a complete lie. I had to lie there for four hours without moving and wasn’t allowed to get up at all. It was much for painful than I thought it would be and I felt completely unprepared for everything that happened.

The next part was very scary. I started to feel off and bad. Those are two very vague terms, but I didn’t have a better way to describe it. My right hand started to tremor and at first I didn’t think much of it. My mom noticed it and was worried she called for the nurse and it got worse. Both my arms and legs began to tremor rather violently and I wasn’t sure what was going on. I was scared and everyone around me seemed nervous. They called a rapid response team and  within seconds my room filled with at least a dozen people. They started putting more electrodes all over me for the defibrillator and wheeled the machine in. Nurses started asking me questions like, “do you know where you are?” I was completely conscious, just really scared. They gave me a beta blocker and the tremors started to slow down.

The doctor with the RRT wasn’t very concerned with the tremor and once they slowed the tiniest bit, he considered me fine and they all started to leave. The tremors stopped completely about fifteen minutes after they left. They drew some labs, but ultimately didn’t really care why I was shaking. I was very disappointed in their response. When I saw the doctor who did my EP study the following morning he said I should ask my neurologist about it and he doesn’t think it’s a cardiac issue. That’s bullshit. My heart rate and blood pressure shot up while I was shaking, he just doesn’t care enough to try and figure it out. He also added, ” in the EP lab you were shaking, so it was probably just anxiety.” To which I responded, “it was freezing in there,” and he just shrugged me off with, “yeah it’s cold.” I love having my very real and very scary physical medical issues passed off as psychological issue that I don’t have.

Overall the experience was awful and I regret it 100%. I don’t think it was necessary and I wasn’t informed enough to have made the decision. Nothing I read up on could have prepared me for all of this, and I’m extremely disappointed in the level of care I received. I’m not sure how I’m going to move forward from here, I don’t have many options. This was one of the worst medical experiences I’ve had and I’ve spared some details for both my sake and yours. I guess what I would take away from this is trust your gut. You know what’s right. Listen to your body, and don’t feel pressured into doing something you’re not comfortable with because regret is a terrible feeling.

Lots of Love,

Alyssa

 

Pre-EP Feels

I wrote about my first appointment at the electrophysiologist here.

Tomorrow I am having my Electrophysiology study, and I’m not quite sure how to feel. I’m still not particularly nervous,  just anxious to get it over with. These past several weeks have gone by awfully slowly and I’m starting to feel a bit impatient. Scheduling appointments with any specialists takes a while, but scheduling a procedure with a doctor who’s a specialist within a specialty can be particularly difficult. I’m lucky to have gotten in as quick as I did, even if it has felt like a really long time to wait.

I guess I’m mostly just not feeling very hopefully. I don’t think they’re gonna find any abnormal heart tissue to ablate which means the procedure won’t change anything for me. I’ve had so much testing done and it always comes back normal or just barely off so that doctors aren’t sure what to make of the results. My dad told me he has enough hope for the both of us which is a nice thought, but seems a little rose-colored.

One small thing that’s concerning is that you can’t eat or drink after midnight before the EP. This is routine and not at all surprising but with my terrible veins I don’t want dehydration to make them an even bigger issue. I also am currently taking Topiramate which dehydrates you, so the combination of the medication, no water, and my small deep veins could make placing an IV very difficult. They also go through a major vein in your hip to place the catheter in your heart and I don’t want the placement of that to be an issue. Luckily for me I’ll be asleep at that point and it will be their problem. 🙂

The main concern I have is this procedure being unnecessary. What do I do next? I’m supposed to start Botox soon but I’m not feeling super hopeful about that either. Diagnosis wise I’m not sure what we’ll do but we have to continue on.  If they don’t find anything it’s still always good to have more information even if it doesn’t give me a diagnosis it can help rule other things out. I know this is just a low point and I’ll find some hope and pick myself back up soon. I could be completely wrong and this could solve a small portion of my health issues. As someone who likes to be right this is one of the few times I sincerely hope I’m wrong.

Lots of Love,

Alyssa

 

Cardiac Electrophysiologist Update

Yesterday was my Electrophysiologist visit and it went quite well.

We waited for a bit, but once we got into a room the doctor was really quick. He had already reviewed the stress test, EKG, and echo from the cardiologist and had an action plan, which was refreshing. His plan was not one I expected though.

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The doctor said he could do another Hilter monitor but this time for 3-4 weeks, but didn’t think the information would be anymore helpful than the previous 24 hour one was. Instead he suggested an electrophysiology test. This is a procedure where they go through a vein in your inner-hip/groin area and go into your heart with a catheter. If there are any extra chambers, which is what they’re looking for, then they would a cardiac ablation.They also stimulate the heart to see how it responds. He isn’t expecting to see extra chambers, and thinks the final diagnosis is going to be Inappropriate Sinus Tachycardia. The doctor said “Inappropriate sinus tachycardia is frustrating, because it happens for no reason and you have to rule out other things to properly diagnose it.” Great, another annoying medical condition that doesn’t seem to really have a reason, I might as well collect them now.

Whatever it is, it’s going to be nice to get a definitive diagnosis about something. He said the scheduler should call before Monday afternoon, and the procedure will probably be done in the next 3-4 weeks. That’s really fast, and I’m surprised he thinks he’s going to be able to do it so soon. You normally have to wait 3-4 weeks at least to get a specialist appointment, let alone schedule a procedure.

Oddly I’m not nervous at all, which kinda weirds me out. Lately I’ve felt like everything that’s been happening isn’t actually happening to me. Like I’m watching a movie and someone else is going through all of this; it’s been weird. Even when I look in the mirror I don’t see myself, and I don’t mean that metaphorically. I’m almost surprised at my reflection every time, and I don’t think it’s just the sudden weight gain. When I look at pictures from a year ago when I was really thin, and had my long golden hair, (before I cut it all off and dyed it), I also don’t see me. I’m not really sure what I look like, and for someone who doesn’t have vision problems, I feel like thats an odd thing to say. Maybe I’ll get nervous when it’s planned or a few days before the procedure, but for now I feel kinda numb about it.

I’m happy we’re doing something about the tachycardia, because I honestly waited way too long to go see a cardiologist. The chronic pain had always been the most important thing in my eyes, so I put this on the back-burner. I’ve brought it up to plenty of doctors, but they’ve all shrugged it off and just said “that’s weird.”

So, here’s my update since for once there’s actually something to report instead of just medication changes. I hope you’re all doing well, and are feeling okay. I’d love to hear about what’s going on in your life!

Lots of Love,

Alyssa

Update: The EPT is scheduled for 3/2/17. Longer than he said, but not too bad!