Newbie to Afib

Hi there everyone - this is my first post, and I apologize if it's long.....I need to give you background....thanks for adding me to the forum, BTW.

I am 45 years old, live in the Chicagoland area.... I was diagnosed with HOCM (hypertrophic cardiomyopathy with obstruction) in 2008, had an AICD placed 7/25/2008 (2nd one in November 2016).... Never really had a lot of problems, some shortness of breath on exertion - but could still work out and do most things. Only had the ICD zap me once legitimately for v-tach. The other time was my wedding night - which was not legit, and a bad setting - but that's another story! LOL! I was put on 200mg of amiodarone for after the legit zap, and was already taking 25mg of metoprolol daily. They eventually decreased me to 100mg of amiodarone.

I also have ITP (immune thrombocytopenia purpura - autoimmune disease that destroys platelets - dx in 2002) - which has been treated and stable since 2009 with a platelet medication.

This past February, I was told I had lupus nephritis - (autoimmune kidney inflammation) - but no other lupus symptoms whatsoever. This nephritis caused edema and massive protein leakage. Also with the nephritis, the liver kicked into overdrive.... and raised my cholesterol - which has never been a problem.... ugh!

In April, I started feeling some heart racing stuff going on, and some weight loss - which we figured out was due to the fact that the hypothyroid that was caused by amiodarone had flipped to hyperthyroid - so that was sorted out... no afib was detected by the AICD.

Apparently I was resistant to lasix - it worked a little bit....but the edema kept getting worse. So they tried adding a thiazide to help with the resistance in the beginning of June - and it worked!!! (metolazone 2.5mg/day w/40mg of lasix)....I was thrilled! My nice legs were back, and I could wear sandals again....yay! It IS summer, after all.

So, June 7th - my heart was pounding ALL DAY long... was making me crazy. I decided to call the doc on the 8th, and they sent me to the ER. Come to find out I was in afib, that was likely triggered by an electrolyte imbalance due to the diuretics. I was admitted and they had me on cardizem for a few days to get my heart rate down, hoping it would correct itself.... and went home on the 10th. They put me on blood thinners so they could cardiovert in a month if I didn't snap out of it. (this is contrary to my platelet disorder - so everything is very complicated)

So, since that hospitalization, I went from doing everything - to basically doing nothing. I was working in the yard, and doing normal things... I can barely go up stairs at this point.... which got worse because the afib nonsense made the edema worse since it screws up my heartbeat/rate....and now my body has a harder time getting rid of fluids. This makes legs feel like they are 500lbs each, can't wear normal shoes... it's awful.

The edema got SO BAD at the end of June, they admitted me for a week for IV lasix.... and were treating the afib again because my heart rate was too high. I had fluid overload in my chest as well. Since I knew I was going to be there a few days, I said - hey - I know it's not been a month on blood thinners, but I know you can do a TEE to check for a clot before cardioversion... so they scheduled that. Did the TEE, and found a stupid clot... HUGE BUMMER!!!! (in atrial appendage, apparently)....so I went home on a new blood thinner to help spare my kidneys - and back on metolazone every other day (2.5mg) - and 60mg lasix 2x a day. As of today - I think it's my best edema day, but my muscles are weak and I still am not able to do as much as I could before....

ANYWAY.................. I'm on 200mg of amiodarone, 200mg of metoprolol, and 300mg of caridzem/dilatazem (sp?) daily....plus the blood thinner, baby aspirin.... diiuretics.... stupid thyroid med (because of amiodarone)...cellcept and prednisone for the kidney issue......and clearly not enough xanax, because I'm SO anxious and scared.

I want to know that I'm going to be myself again someday - the doctors say that I will be - but I'm really losing hope. I lost my mom last summer, and I'm the only child - and this is SO HARD going through without her (dad passed in 2012) - have a husband and great friends - but NO ONE understands. I feel like my life has been taken from me.... I HATE asking for help, I HATE even MORE that I need to ask for help to begin with....

What if cardioversion doesn't work? What if ablation doesn't work...(if we have to go that route)....? All these meds make me feel weird... so many, I never felt so dozy (yet unable to sleep) in my life. I want to start smoking again because of all the stress and anxiety.... I've started trying to meditate. I am a total type A personality, and very independent.... so it makes it all the more difficult.

Will I ever be at the gym again? Snorkeling? Traveling? Will I ever have a night where I can have a few drinks again?

On a positive note, I've lost 30lbs lol due to a much better diet - so that's a plus - except I need new clothes and am afraid to buy anything.... don't want to spend the $ and gain it all back and then some because of these meds!

I would trade this heart stuff and kidney stuff to have low platelets again in a second - I thought I was going to die then.... this other stuff is so much scarier and worse.....

UGH!

THANKS FOR READING!!!

Really sorry you have to go through all that! Sounds like you need to see a talented integrative physician. The current lot is not helping - obviously.
Treating symptoms with all these drugs.....
While it's way beyond me to suggest any treatment it does remind me of Dr Terry Whals, her MS and the way she was treated by the very 'best'
medicos with no positive results. Maybe you get inspiration from reading/listening to her - hope so!

Ok, wow, that’s a lot. What stands out to me is the thiazide and arrhythmia link. HCTZ will crater your patssium levels. Have you tried supplementation? We always say that magnesium and potassium complement each other. I’d try supplementing magnesium to bowel tolerance in the most bioavailable form - bisglycinate chelate - along with potassium either from dietary sources or powdered form. That being said, CHECK KIDNEY FUNCTION FIRST. This cannot be overstated. What you’ve described with the edema suggests some dysfunction there, and that would need to be diagnosed first.

Other lifestyle choices such as weight management and certainly total abstention from tobacco use can only be helpful. I can’t say whether ablation is a good idea or not at this point, but the drug levels you mention are near the high end of their ranges, and I think some risk factor management makes sense to get those levels more reasonable before exploring surgical options.

Quote
pandapab
What if cardioversion doesn't work? What if ablation doesn't work...(if we have to go that route)....?

First, I agree with wolfpack's comments. I'm a bit surprised your doctors don't already have you on a potassium supplement with all the diuretics going on.

Second, your situation is so complex I'm going to limit my comments to what I quoted above....

Cardioversion will probably work, but it probably won't last. It's never a permanent solution. However, since you're already on amiodarone it has a good chance of lasting for a decent period of time to give you some relief and time to think.

If you choose to pursue ablation -- and I think you should give it serious consideration -- I'm not going to mince words. You should consider no one else in the world other than Andrea Natale in Austin Texas. You're far too complex to even think about letting anyone of lesser skills touch you with an ablation catheter.

Wow....
I'm new to also new the AFib world... So I can't really offer advice, but wanted to say I'm really sorry you are going through so much!

Ok, Ive been on all those meds before. Do those dosages strike anyone as a bit excessive? 25mg of Metop lowers my HR from Tachy to 75/80 every time. The most Ive taken in afib was 100mg. Plus the maximum daily of Diltiazem?
If I was put on that regimen, Id be taking Carey's advice and booking a trip to beautiful Austin TX sooner than later.

Wow.... thanks for the responses! I appreciate it so much!

I guess I failed to mention that I am currently on a potassium supplement, not to mention I knew to start eating potassium rich foods because of the prednisone AND diuretics - and had been doing that.

Last stay in the hospital, they told me to STOP magnesium supplements - but I am not sure why. That's on my list of questions for the cardiologist tomorrow.

My kidney function is tested constantly.... because of my existing kidney issues that were diagnosed in February (and of course of the effects of the diuretics on it, and treatment started early March (Cellcept and prednisone, as mentioned above in my novel lol) That WAS the only cause of edema, but the afib made it worse.

MY pharmacy questioned the addition of cardizem when I was already on amiodarone.... and had to call the doctors again to verify. I feel like it's all a bit much, so I'm not sure WTF is going on.

Problem here with journeying to Austin (or anywhere else) is insurance - I won't be covered if I go outside of my HMO to get any other work done. If anything, I think my cardiology group would probably send me to Mayo Clinic - but I'd prefer to get sent to Northwestern in Chicago. They are a Center of Excellence for Hypertrophic Cardiomyopathy according to 4hcm.org....but again, insurance....I am not sure how to get around all of that, and the stress of making a change in the midst of a 'crisis' is extremely overwhelming.

I just want to feel like myself again, and resume normal activities. I know that the edema has been a big factor, and the muscle atrophy due to that and not being as active because I can't be... which sucks, because I'm a 'go, go, go' type of person. This TRULY sucks!!! I AM noticing improvement, but feel so 'cloudy.'

Want to know I will travel again, snorkel, hike, work out.... and be 'normal.' Do NOT want to wear compression stockings forever (though edema has improved since I got out of the hospital on the 6th.... but I'm still not normal yet. SO DEPRESSING!!!

With so many things going on, I'm left to wonder if the AF is secondary to it all. What caused the hypertrophic cardiomyopathy? Hypertension? Have you had an echo done? Ejection fraction?

You would certainly be a case for the top notch EP. I'd probably go the medication route for the time being until things stabilized. I don't know how your HMO works but is it possible to work out an out-of-network arrangement with them? I've heard this is possible in the past, but who knows now with how far we've gone to blow up our healthcare system. I agree this is added stress on top of everything that is unneeded and counterproductive.

I was diagnosed with HOCM in 2008. It was found because I was getting pre-syncopal episodes. It was diagnosed via EKG, Echo, 24 hour holter monitor. They consulted in depth with Mayo Clinic before placing an AICD because of my age.

I NEVER had high BP (always low) but was diagnosed with MVP several years earlier - which is the #1 misdiagnosis for HCM.... it's SUPPOSEDLY hereditary, and I've had no family with it - until just recently an aunt found out she has a form of it as well... she's much older than me,.

I've had several echos done over the past 10 years...The TEE I had done on 7/2 said that the the 'estimated ejection fraction was 45%' and the 2D echo said it was 50-55%. that was on 6/8 - which was the day after the afib started.

I still am a big believer that the metolazone taken daily with the lasix causing the electrolyte imbalance is what triggered the afib.... but was also told that at some point people with HCM end up with afib, and most people in the HCM forum on Facebook I read seem to have afib, but I NEVER had it until after this episode at the beginning of June.

I can contact the medical group and find out if I can work an out of network arrangement - but not sure I'll be able to afford it. It's not that I don't trust my physicians, I've got a great EP, and just found what seems to be an amazing cardiologist that works very closely with him....and I actually LIKE him - which I don't say very often....I've had some very bad luck with doctors. Fired the first nephrologist I saw in February, and straight out told the last cardiologist I saw that I didn't plan on seeing him again. He was condescending - and basically told me since I had edema, I was in heart failure - which I KNEW wasn't right.... I know my body, and my labs did NOT indicate that - so I kept pushing for tests, which led to the nephrotic syndrome/nephritis diagnosis.

I might add that since November 2016 the following things have happened in my life: (add to already being high strung, type A personality who's always on the go)...........

*My mother was diagnosed with lung cancer
*My work bought another company which tripled my workload
*Amazing beach vacation canceled due to my mom's illness
*Mom hospitalized for pneumonia while on chemo
*Mom hospitalized for sepsis while on chemo and radiation
*Mom died 6/23/2017
*I'm an only child - with an amazing husband - but then we had to clean out mom's house (where I grew up) all last summer and
deal with all the aftermath and paperwork, etc.
*Had the house remodeled from 10/2017-1/2018 - dealing with contractors is SO much fun! LOL
*Moving our stuff from our house to the new house
*Selling our house and moving in Jan 2018.
*Nephritis dx in Feb 2018

Mind you during all the back and forth between mom being sick and then cleaning her house and construction, we ate VERY poorly (fast food).... and honestly, with all of the busy-ness, I don't believe I truly dealt properly with the grief of losing my mom - who was also my very best friend in the world. We quit smoking in January 2017, started again a little bit in July or August of 2017, but not to the extent of what we were previously. Quit again in June of this year after this afib started.

BP probably started to go up in July 2017 a little bit, which is also when the low protein started in my blood (beginning of kidney issues, apparently) - but we just thought I wasn't eating properly because of all that had been going on.

PHEW...................... sorry guys....................

I totally get the hassle of dealing with doctors. I fired my first set, too. GP and cardio. Never fun but you gotta do what you gotta do!

You really need to figure out a way to get to Austin if it's at all possible. Good news is you can always keep your local doctors. You'd keep your cardio anyway and EPs can function in a clinical role. Anyone worth his or her salt should be willing to do that. Given your plethora of comorbidities, have you considered seeking out an integrative MD? See if there's a common thread to all of this? Hopefully the HMO doesn't make that hard to do.

They have a department with integrative medicine, and I am looking into that. I am also starting to try to incorporate meditation into my life, and soon yoga...once I can get some strength built back up. I cannot stand this trouble I'm having with stairs that I did not have before 6/7.... it's so pathetic for a 45 year old.... and embarrassing! Plus, I can't wear shorts or skirts...or sandals....ugh!

I know autoimmunity is one thing, which is aggravated by stress. Heart conditions can be aggravated by stress as well.... and I've had my share of it.

I will have to do some digging into whether I can go out of network, but with an HMO - it's not really likely.....

Ugh.... cannot stand the heat in Chicago, not sure I am cool with heading to Austin lol.... PLUS, I don't even know if I should be traveling right now...

Good move panda! Got nothing to loose and everything to gain. As the old saying goes:'If you keep doing what you are doing, you keep getting what you are getting'.
After all, they have pumped you full with drugs (admittedly, they may be the only way in the short term) but haven't helped you resolve your problem? Bit like shifting the deck chairs....?
Let's hope your integrative doctor is talented and not just a technician.



Edited 1 time(s). Last edit at 07/18/2018 08:57PM by Joe.

Good move panda! Got nothing to loose and everything to gain. As the old saying goes:'If you keep doing what you are doing, you keep getting what you are getting'.
After all, they have pumped you full with drugs (admittedly, they may be the only way in the short term) but haven't helped you resolve your problem? Bit like shifting the deck chairs....?
Let's hope your integrative doctor is talented and not just a technician.

Well - I saw the cardiologist today, and they seem pretty darn confident about the cardioversion... he wants me to see my EP ASAP, so I'm going to see him on Monday.... then we're scheduling cardioversion for about the beginning of September....and they are hoping to get me off some of these medications that they have me on. They think that the amiodarone will help the cardioversion work.... and I sure hope they are right.

I don't have, or have not found an 'integrative doctor,' so to speak - but there are integrative medicine services in the specialty clinic at the hospital (which is also where the afib clinic is, and the CHF clinic, and palliative clinic is) so I will be looking into acupuncture and other things that they offered. Have already started to do some guided meditation - which is super tough for me. Once I can get out in my yard/garden again, I know some more stress will be taken away.... dirt therapy is always good.

This is all new, so technically - we haven't tried much yet, and since they found that clot - it set us back.... and the heart thing set my kidney thing back..........so now, it's just hoping to get the afib fixed and then the kidney thing will start to improve again (I WAS improving til afib)....

The edema though - that honestly is the worst part.... well, besides the shortness of breath.... it doesn't help. Attempted going without compression stockings today - think it may have been a mistake. OOPS!

Any other insight is appreciated.................

Hello Pandapap,

I have nothing to add to the sage advice of the veterans you find here - only my own encouragement to hang in there. I am a newbie afibber myself & understand how overwhelming it can be to have all this come at you at once.

You will survive and you will adapt. Try to take it step by manageable step and carefully consider everything you are learning.

And take comfort you are not alone in this journey.

Kind regards

Anne