Monthly Archives: January 2012

Answers! A Second Opinion Success

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So, last night was down right awful. I was having skips like never before. Every 4-10 beats for quite a while and then every few minutes for the rest of the night. This sent me into a straight up panic attack. I have not really had a full blown panic in years and let me tell ya…they sure don’t get easier with time. And this was WITH an extra klonopin. I was up until about 1am and with the help of a couple great people online, my husband and mother and some ridiculous sitcoms…I was able to finally settle down and drift off to sleep.

When I woke up, I felt a few and was pretty anxious, but I did what I had to do because my appointment was at 10:45 and I could not wait a second longer.

I picked up  my records from All Saints and headed to Burlington. My mom met us as soon as we arrived and we decided she would come in with me. She laughed and made fun of my OCD organizing of my records. I had them in a binder according to date and test. Hey! I thought I was being pro-active and considerate!!

The nurse called us back right away and she couldn’t have been nicer. Their staff is quite remarkable. In fact, the woman running the department called me on my way out there to make sure I was okay and all set. I mean, clearly, they did this because they know my mom…but still. It felt good to be treated so well. And I still say that the nursing staff at the All Saints EP office is also very nice and compassionate.

The RN did her RN stuff…BP was what it always is….107/60-ish.  Heart rate was 80-ish. I was calm. I always feel much better once I step foot into a doctor’s office. Always.

She brought my info out to the Dr. so he could review. A short time later he entered the room with a very friendly disposition. He has a dry sense of humor and is very straight forward. I really liked him a lot. He kept calling me young too which always helps 🙂

So…here are the basics…

  • I won’t say exactly what he said about the EP suggesting an ablation…because I don’t think he would want that in writing. But he did say that there is no way he sees any need for me to have one. Says there are risks and it may not even work  and it just is not warranted. Yes, I started to cry. It was just such a relief.
  • He said that I am just one of those people who feel everything with my heart while there are people who would never feel these things.
  • He did say there IS something there. There are events happening with my heart, but they are not anything to be worried about. He said as long as I am not passing out or feeling dizzy when they happen – it doesn’t matter how many I have – I should try to go on with what I am doing. He said I can run (but not to because its bad for the knees lol), scuba dive or sky dive if I wanted to. I assured him I will not be doing any of those things regardless of heart symptoms 🙂
  • He saw no issues with any meds or vitamins I have been taking.
  • He said having more PACs/PVCs right before menses is very common but he didn’t know if uterine fibroids make it worse (I read that they release more estrogen). I will ask my Gyno about that and it may be the push I need to get that hysterectomy.
  • I asked if I could drink. He said that people who drink live longer than people who don’t. “At least, that is what I tell myself every night,” he said tongue in cheek. But he did say that it can be a trigger for some people so if it is, to simply stop.
  • He said everything he saw on my many tests amounts to PACs, PVCs and some possible SVTs. He said none of it is something to worry about. He said nothing showed any signs of a dangerous arrhythmias such as Afib, V-Tach or WPW.
  • He said I could be the most zen, buddhist-like person in the world and I would still feel these because that is just how my body is. But he did say he thinks stress and anxiety can make them worse or last longer.
  • I asked if there is any reason to believe that an event like the one that sent me to the ER 8 years ago may never happen again and he said sure – it may never happen again.
  • My potassium was low when I was in the ER that day. I asked about that being a possible reason. He wasn’t sure but he did say he likes people to have about a level 4 (mine was 3.4) but that people in good shape are typically lower. He said it would be fine to take a potassium supplement if I wanted. I asked about magnesium and he kinda shrugged it off but said, “Sure, if you wanna.”
  • I asked if there is anything I can do when I am having a really bad time like last night. He said I could take a little extra of my beta blocker. In fact, that was his suggestion at the end of the appointment. Right now, I take 12.5mg of metoprolol twice a day. He said to double it and see if that helps. It seems he thinks it might. When I first started this med, I was taking 100mg a day. So, I have no problems with this. It will probably make me more tired and could indeed make it harder to lose weight, but at this point I don’t care. I cannot live feeling the way I did last night.
  • At the very end, I asked him what he would say to his own kid and he said, “I would tell them to suck it up.” LMAO. I know it sounds like he is a hard ass, but really he isn’t. He made it clear to my mom that this is very real and I am not crazy. It is just something I have to learn to live with. And he just does it with a sense of humor, which I very much appreciate.
  • He did say that if he started feeling these he would be paranoid too. Then he made the comment, “Just because someone is paranoid doesn’t mean there isn’t someone out to get you.” So he is sympathetic to how this can really mess with someone. He said that he thought biofeedback was a crock of shit until he tried it one day and said it would be worth looking into. And he wants me to make sure I am seeing a therapist who knows what they are doing for my anxiety (and she does…she’s great).
  • He said that an ablation may likely not even help the PACs/PVCs and since those are my issues – he saw no reason to risk an invasive procedure. He said there are many steps to take before trying something like that.

 

So basically, he said this sucks…we don’t know why it just happens to some people or why only some people feel it. He said as it is now, there is nothing he sees which needs ablation. He said we can work with meds for comfort, but he’s like to stick with beta blockers because they are very benign compared to other meds. And that I need to work on simply dealing with these. This is indeed pretty much what I was hoping to hear – aside from some miracle instant cure. I am very happy with the appointment and the doctor. Now, I just have to work on believing him and going on with my life….

 

As for my holter monitor results…in 46 hours I had the following (Dr. said none of this is concerning):

205,581 QRS Complexes – I have no clue what this means but much of it could be artifact (leads being disrupted, tape falling off, etc.)

91 Ventricular Beats – I believe these are the PVCs

6 Supraventricular Beats – I believe these are the PACs

Ventricular and Supraventricular Beats were all isolated. No couplets, bigemy or runs

Minimum Rate – 49Average Rate – 73

Maximum Rare – 117 (and I was even exercising lol…clearly not very hard)

 

 

My plan of action:

Today I am picking up a book from the library which someone recommended to me called Hope and Help for Your Nerves by Claire Weekes. I ordered 3 other books: Peace from Nervous Suffering, Deadly Emotions and Power of the Subconcious Mind. All of these are suppose to help a person understand the body/mind connection. If it is true that my anxiety is making these ectopic beats worse, then I want to learn how NOT to do that. They will always be there….but I don’t want to make it worse.

I am going to ask my therapist for suggestions on a biofeedback practioner.

I am going to up my dose of beta blocker to 50 mg a day.

I am going to try meditation and relaxation exercises on a daily basis.

I am going to live my life.

 

Thank you to everyone who has helped me though this. This isn’t the end of the road by a long shot. I will need A LOT of help getting over and getting used to this shit. But I really appreciate the people who have helped thus far. You know who you are….

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What I Want…Too Much to Ask??

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Since I am being negative and gloomy and such a whiney, bitchy mess….I figured, hell…let’s share the misery. Yea, I am fuckin’ generous like that. You’re welcome.

You know…its not like I ask for a lot. I don’t pray for riches (while I would love it…I know I don’t need it). I don’t expect perfection. I don’t need fancy things, a model’s body or a million friends. So, what DO I want?? Here is my wish list. It is not my bucket list. It is not a dream list of unattainable goals and goodies. These are things I see in the lives of others every day…things I feel like I should and could have if only I figured out how.

 

I want to feel contentment a good portion of the time.

I want to feel healthy most of the time.

I want to feel happiness more often than not.

I want to lose 10 pounds. I don’t need to wear bikinis again…I don’t need a knock out bod. I just want to wear a swimsuit without the self loathing.

I want some energy. Not a lot. I have no desire to run a marathon. I just want to know what it feels like to NOT be exhausted all of the time.

I want to be able to drink a coffee or a drink without worrying what it will do to my heart.

I never want to have to worry about my heart at all.

I don’t want to ever be concerned with dying…never ever again.

I want to find peace in the here and now.

I want to accept death and be okay with it.

I want to have a belief in an afterlife.

I want to be able to let go of past mistakes, things which have been done to me and things I have done to others.

I want to stop the what ifs.

I want to get rid of all regrets.

I want to let go of my need for control.

I want a friend or two I can REALLY love and count on.

I want to be myself without worrying what and how people think about me.

I want true confidence and self esteem.

I want to feel genuine self worth.

I want laughter to be a part of every single day.

I want to KNOW that the kids will be happy and healthy their whole lives.

I want to feel that my husband will truly love me no matter what.

I want to know that Cassidy will always be very near by – by choice.

I want my mother and brother to have total respect for and pride in me.

I want to become a better writer.

I want to be one of those happy, fun, close families.

I want to stop being sad about not having more children.

I want my step daughter to one day see the truth about how much I cared for and loved her while she was young.

I want to be a great mother.

I want people to feel better for having known me.

I want my kids to grow up with compassion, manners and humility.

I want to go to Hawaii before I die.

I want to live to be a vibrant, healthy old old woman.

I want to let go of all negativity to make room for the positive.

I want to stop judging others and them to stop judging me.

I want a country who cares more about people than money.

I want to feel pretty once in a while.

I want to face problems as molehills, not mountains.

To be continued….

Heart Anxiety – I Cannot Go Through This Again!!

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Boy am I pissed. I feel like I put the car in reverse just to go back to that pit was I able to drive from seemingly long ago. I know it is unhealthy and the worst thing for me…but I cannot seem to get my foot off the accelerator.

GAD – Generalized Anxiety Disorder – is something I deal with on a daily basis. This is no shock or surprise. I am in therapy for it and have been gradually getting better at dealing with it. But the panic, terror and constant fear is something I thought I had left in the dust several years ago. At one time in my life, I was having severe panic attacks almost every single day. That is when I started taking klonopin and since then – I have been pretty ok. No real full blown attacks since. But sadly, I feel myself regressing.

The fear has reintroduced itself to my life and I am trying SO hard to squash it. Just like it was in my 20s, this is all sparked by my heart symptoms. This past week, my PACs (feels like a skipped beat…very noticable) have been much worse than normal. They are always worse the week prior to my period…but this month has been more frequent than usual.

I am letting this consume me. It has taken over. I still try to be normal…cooks meals for the family, clean, shop, even exercise (tho much lighter). But all the while I am filled with anxiety and fear and worry. I am living in a world of what if-s and why me-s.

I have an appointment tomorrow with a cardiologist for a second opinion. Read HERE for more info on that situation. I just learned that all my records may not be ready on time and I am now really pissed off. I feel it is very important he has all the tests to read over. Charlie took off work to bring me and I NEED this to be tomorrow. I cannot wait longer. I have made it my goal that after this consult, I will get back to my normal life and leave this behind. I promised myself. So this needs to happen tomorrow.

My mom works with this Dr. and thinks very highly of him. His staff was excellent in getting me in whenever I wanted and are eager to help me. I feel good about going. But I am worried I won’t have all the info he needs.

I should also say that the staff where my current EP is is also great. They have been helpful and understanding. But I do fear the Dr. may be pushing for a procedure I may not need. I need to be sure.

By this time tomorrow I want to be calm and reassured. I want to laugh and enjoy my life. I deserve it damnit. I will NOT live like this again. Too many years were wasted on constant anxiety attacks…constant terror. I will NOT do that again.

Stereotaxis/Magnetic Navigation Ablation

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If you FF to about 14:00 they actually show the procedure on someone with afib. Amazing but scary. This is what my electrophysiologist wants to do to me basically….

Rockhopper.tv – Programmes

Also – here are some patient stories from the US which are pretty remarkable. But still scary.

Stereotaxis – Patient Stories

What do you know/think about this new technology?

Heavy Decisions…Having a REALLY Hard Time

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Today I had my appointment with my EP (electrophysiologist) to follow-up after an event monitor found several events including PACs and a run of SVT. Some things were reassuring, some confusing and some upsetting.

She drew pictures and explained to me what she thinks is happening. She called these irregular events – ECHO BEATS. This is a term I have not heard and cannot find much about it. She is polish and perhaps they use different terminology?? She said echo beats were the beats that precede an SVT event. On my results was a run of 7 SVT beats. She showed me the early beats (which I think are the PACs) on the graph. And she asked me, “You must be really sensitive, huh?” Ummm yep!! Telling you, I feel EVERYTHING.

In her picture she showed a loop and said the beats were getting trapped in this loop created by an extra pathway. I have done some reading online and cannot really tell if this would be AVNRT, AVRT or AP. While showing me the readout (ekg-style), it all just looked like PACs but in the SVT event it looked like a bunch of PACs right after one another.  I never felt the fast rate of the SVT, only the pause after. I always feel the pause…it simply feels like your heart stops for a second.

Because I didn’t feel the fast rate, we want to make sure I am not having more than we think so I am wearing a lovely Holter Monitor for 2 days. No shower or bath ALLL weekend. SUCKYYYY!!! I am addicted to hot baths in the winter. I will also not be leaving the house until I can take this off on Sunday. And she doesn’t want me to take any of my anxiety medicine so that she can see it at its worst. GREAT! This will be a blast. (sigh)

I had a bad night last night and the anxiety med helped I think. It was skipping every 30 seconds for 10 minutes straight. I got so panicked that I started shaking and got super cold. I haven’t felt like that in years.  Anyway…

She showed me the wires/caths she uses for her EP Studies/Ablations. She told me the name, but with her accent, it was hard to understand. Something like STEROXIS SYSTEM or something like that. She showed me the ones most hospitals use which were stiff and hard to move compared to this new kind which are more like spaghetti. They are magnetized and they can control with within millimeters. She said because of those, there is much less chance for error.

Q&A…

  • What is the success rate for ablations? With the problem she believes I have, she said 99%. She said if the extra pathway is too close to my natural pathway, she simply won’t do the ablation.
  • What is the worst thing that can happen to me if I do NOT get an ablation? She said it is POSSIBLE (about 11% I think she said) that I could end up with AFIB. If that happened, I would then get an ablation, but the success rate might not be as high as it can come back. AFIB can have a risk of stroke or heart failure…eventually…MAYBE. She promised that none of these would cause sudden death. But she also knows how scared I am…so is she not telling me things to stop me from worrying???
  • Why have the ablation? Biggest reason is quality of life. She must have noticed my tears and phone calls and huge list of questions. She can see these are affecting my life and making me unhappy. She said, “Why on earth live that way if I can fix it in a couple hours and you will never have to see me again.”
  • Would I be sedated for the procedure? She said I would be asleep the whole time. I asked if being sedated would make it hard to trigger the problem (they need to do this in order to fix it). She said, “Oh, I will get it going, don’t worry.” I told her I have a huge fear of adrenaline. She just said…you will be sleeping, you won’t feel it.
  • I asked if prior pot use caused this. She said no. But that it was good that I quit because it isn’t good for my mind with the anxiety which makes the beats worse.
  • Can I have a glass or two of wine? Yes, but only white wine. They are finding that red wine can be a big trigger for many people. Weird. And not a lot, only a glass or two.
  • Do hormones play a role? YES!! And it surely WILL get worse the closer I am to menopause.
  • Is this genetic…could I give this to my daughter? No.
  • On the event monitor, every event was recorded by me…it never automatically went off due to a dangerous event.
  • How does the Beta Blocker help? Probably more for anxiety…it slows the heart rate too.
  • When should I worry or go to the ER? Never. (LOL…seriously??!!)
  • Can stress cause this? No, but it makes it worse.

So, she is REALLY pushing for this EP Study/Ablation. She said she cannot be sure what kind of SVT I have until she does the study. It would be done in Milwaukee. She acted as though it was a no-brainer. Although she did say I am in no real danger if I do not get it. She said it really is a quality of life thing. And she thinks I wouldn’t be as fatigued if this was cured. I have been majorly fatigued since my teens and they have never been able to tell me why.

But there are risks to the procedure which include stroke and death. Those rates are pretty low, but WHAT IF?? Is some discomfort and anxiety a few times a month worth possibly dying or having to have a pacemaker???

And let me kinda explain this ablation thing to ya…

I would be put under with a general anesthetic. I have had this once before and it scare the piss outta me. And this time would be worse because I would have to be intubated (I did not have to be last time because it was so short). Then they shave your peek-a-chu and make a couple incisions in your groin area. Through those incisions they thread wires up to your heart. They then put adrenaline (or a like substance) into your IV to make your heart go into the irregular beat. Once they can map the beats and see where the issue is, the then burn it with the tip of the wires…essentially burning a scar onto your heart where the extra pathway is. UGH. It sounds so awful.

I have a huge decision to make and it scares the piss out of me. I will see what this Holter reports probably in about a week. I will then get a second opinion from a cardiologist at a different hospital as well. I am doing that only because I know that with specialists (an EP is a specialist) – they often are more eager to perform their talents. I’d like to see what a cardiologist has to say and since my mom kinda knows him through work…why not, right??

Okay. So…I would LOVE to hear what you have to say. I am sorry this is so long. I hope I didn’t leave anything out.

So, what should I do? I really need input, advice, etc….

By the way…thanks for listening!!

 

UPDATE – I found the info on that new cath system she was talking about – http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1586159/

Bleep, Bleep, BLEEEEEEEEEEP (and other heart talk)

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I have discussed my flip floppy, fast, crazy fucked up heart issues occasionally throughout the years. HERE is one blog…and HERE is another. Those posts go over all the basics as well as some of the fun, fun detail.

Long story short…

In my 20s my heart would flip flop and sometimes race. I made several trips to the ER (ER stands for Errrrr, I don’t know whats wrong with you…). I would be patted on the head, given a xanax and told I need to see a shrink (as if I wasn’t already a mental patient).

8 years ago, I ended up in the Errrrr again with a sustained heart rate of 170-180 for over 4 hours. Normal rate is 60-90. It started out of nowhere and my blood pressure dropped to 50/30 (my normal is about 110/70) at one point and I thought I was a goner FOR SURE. And the looks on the RN’s faces were pretty scary as well. It was all very horrible and I don’t think I ever really got over that trauma. My rate finally came down when given a beta blocker. I have been on beta blockers ever since.

I saw a Cardiologist the next day and she diagnosed me with SVT (supraventricular tachycardia) and said I have probably had this all along…that I probably never really had text book panic disorder. I had weeks and weeks of terror. I was so consumed with fear. Also during those weeks, I became pregnant. Coming to terms with the pregnancy and its symptoms as well as getting the right medication dosage…it was really rough. But I got through it.

Not long after, I saw an EP (electrophysiologist) who specializes in arrhythmias. He looked at my chart and all my test results. He then said, “Ahhh, you probably don’t have SVT. Take your medication and don’t worry. You don’t need an ablation (something I was VERY worried about).” HERE is a description of an ablation procedure. Seriously, it sounds god awful.

I begin to be more and more at ease. The medication was working and aside from some occasional flip flops (which are technically PACs).

About 8 months ago (or so) I started to feel more PACs before my period. And it was making me anxious again. I made an appt with a new EP. She set me up with a 30 day heart monitor. I wrote about it HERE. I got the results back on Monday. Not cool.

I wanted the test because I was hoping it would finally ease my mind. I figured they would just tell me they are harmless palpitations (like they have said in the past) and to stop worrying. And while the news wasn’t HORRIBLE, it wasn’t what I hoped exactly. The RN said that I had a couple PAC Couplets (which mean 2 in a row) and a 7 beat run of SVT. She mentioned having an ablation if they were starting to effect my life. So, two things I did NOT want to hear…SVT and Ablation.

I scheduled an appointment with the EP just to talk. That is on Friday. And then I cried the rest of the day. I was just so disappointed. I was really hoping that I could possibly even STOP my beta blocker. They impede weight loss significantly and make me tired as well as depressed. I hate the thought of taking them forever.

I have had a couple of days to sort things out…do some reading and my mom talked to a cardio employee at her hospital. I do feel better. I realize now that the news could have been so much worse and this really isn’t THAT bad. And what it all comes down to is acceptance. I need to accept that I will indeed one day die. And I will never be able to control when and how that happens. No doubt, it is still my biggest fear/obsession – but I need to work on it because it is taking over my life with worry. I also need to accept that as we age (ugh…what a fucked up term), shit is simply going to happen. Whether it is cancer, diabetes, heart disease…SOMETHING…we cannot stay perfect forever. I have to just deal with it the best I can. And if that means one day having to have wires zapping my heart…well…then that is what it means. (sigh)

I will go to my appointment on Friday with a list of questions and a request for one more test (Holter Monitor, which I think will be more appropriate). If I am unhappy with what she says, I will have a second opinion with the Dr at my mom’s hospital. After that, I will learn to live with what I have to live with. Period.

And that is my heart to BLEEP heart for today. Talk at ya soon.

 

 

Just a Bunch of Boring Crap

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Well I certainly hope everyone enjoyed their holidays and are looking forward to the New Year. Are ya all amped up? Any resolutions? Are you sick of hearing the word resolution?? I know I am.

I don’t make New Years resolutions because I make them all year-long. And I illustrate them on my Vision Board. Now THAT I need to update. Its old and not really workin’ anymore. I need to freshen it up. Some of the goals will remain the same, but new ones should be added. But all in all, I still have the same desires, wishes and priorities. Weight loss (MUST lose 10 lbs by July), happy family, good marriage, improvement in my writing, letting go of negativity and poor self-image, make some friends (real life friends…not just the online kind)…ya know, basic stuff for which I am always reaching.

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I am finally done with the Heart Event Monitor. It caught some of the PVCs I have been feeling. But it was nothing like it was the previous month…figures. But hopefully, it will be enough to give the Doc enough info to ease my mind. I am going to call them next week to schedule and appointment to go over the results.

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My anxiety has been weird lately. I was almost completely off my anxiety medicine, but I had to start taking it regularly again. I do take WAY less than prescribed and less than what I was taking…but I sure was hoping to stop altogether. I guess I just can’t do that right now. I was starting to get panicky. Especially during the night when trying to sleep. Of course, the triggers are always health/death based. I worry about Cassidy SO much. I imagine the most terrible things – it is truly ridiculous but scary. I just cannot bear the thought of anything bad ever happening to her.

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For some weird reason, I have been watching this show called One Born Every Minute. It is basically a reality based show that lets you peak in as women are in labor and delivery. It’s really been freaking me out. I will be watching one minute stating, ‘There is NO WAY I will ever go through THAT again!!’ And then 10 minutes later…usually when I see the damn kid…I think, “Oh my God, I have to have another baby before it’s too late!!!” I am maternally bipolar.

I know that having a baby would probably not be in my best interest. I am so very tired all of the time as it is. Cassidy is already 7 years old and it would be like starting over almost. Charlie doesn’t want another. I don’t know how my body could handle another labor like the one I had (christ, that was hell…pure hell). I would have to stop taking the anxiety med and probably go into panic mode for 9 months. And it took me 6 years to lose all that weight…I am trying so hard to get my body back at 37 years old; another pregnancy would likely ruin it for good.

But when I think that this is my only life…when I realize that I may one day REALLY regret not having another…I get overwhelmingly depressed. I see how fast Cassidy is growing…how fast Mackenzie grew up and it floors me. As sad as it is, Mackenzie and I just are not that close. I feel like once she is old enough, she will choose to not even come here anymore. That is very depressing. So it will all be on Cassidy to take care of me when I am old LOL. Ugh. Talk about all your eggs in one basket…

Anyway, this whole baby thing has me pretty upset from time to time. I should probably stop watching that show.

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Another show I have been watching is Sons of Anarchy. We started with episode one over the holidays and are now almost finished with season 3. I am obsessed. I just love a good drama that keeps you wanting more. Breaking Bad, Dexter, Homeland (god, is THAT a great show), Big C, Weeds, The Closer…there aren’t many…but I sure love a good drama.

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I have been volunteering at the Recall Walker headquarters for the past couple months. Only once a week, taking signatures. I feel like I should be doing so much more. I am just a shitty activist, I guess. But its better than nothing, right? It will all be over in about a week. Ugh. I am nervous. But I don’t want to get into any political yakky yak right now…enough of that on Patch.

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Oh hell. I am so tired. I know this post was lame as shit. I promise to make a better attempt soon. Have a good night y’all.