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Old 10-23-2003, 09:03 AM   #1
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KTUC HB User
Unhappy Ongoing Problems with Atrial Fibrillation

Hi. I sure would love it if the other heart patients who hang out at this board would take a look at this:

One year ago today I fainted on the way out to my car after a corporate meeting. I had been very tired and really wanted time off. I thought I was soooo stressed! I was so anxious that I had a hard lump just below my sternum. I’d wake up in the middle of the night unable to catch my breath, my heart pounding. I had 3 weeks coming but wasn’t even able to get a week’s vacation approved and this had been going on since the previous March. I was upset because the A_D took three weeks! I felt slow in the brain and whiney and knew I was and knew that wasn’t my style. After the fainting episode I told myself, “that’s it! I’m going to my gp and asking him to write me a note to get 2 weeks off!” Meanwhile, I was working, then going home and vegetating. I had no energy.

So I was able to get in the next day. He listened to my high anxiety story and about the fainting and panic attacks and breathing problems at nite. Then he listened to my breathing and heart and told me I had a click and a murmur. (Then we both recalled he had said that when I first went to him) He gave me an ekg and told me my heart was in atrial fibrillation and I had symptoms of congestive heart failure. He told me I was going to be at home for at least 2 weeks, wrote the note, put me on Coumadin and Paxil and referred me to a cardiologist.

My life turned around in a 45 minute Dr. visit Yes, 45 minutes with the dr.. He is a DO and has been my gp since 1986.….. Congestive heart failure, what the heck is that! Believe me! I never expected this! I was in shock. I just wanted some time off to get over my stress! Now I was filling out FMLA papers for work.

The cardiologist put me on a Holter monitor and scheduled an echocardiogram. The Holter monitor revealed that I remained in afib the entire 24 hours. After the echo, I was told I had a low EF of 15% and had 4 chamber dilated cardiomyopathy. I was put on Coreg, Lisinopril, Lasix and Aldactone and the Coumadin increased until I was fully anti-coagulated. I was BUSY at the computer looking up all these terms and meds.

I was scheduled for a stress test. Came back abnormal. Scheduled for a Thallium stress test. Came back abnormal. About his time my FMLA ran out and my job faded into the past. I kept my insurance under COBRA

Scheduled for a catherization and possible angioplasty. The catheterization went badly and my artery dissected. I was rushed in for immediate bypass by 1 on 2/11/03. I got some shocks for the afib while they were waiting. I went into afib during the operation and got more shocks. I went into afib again 2 days after the operation. I was put on an IV loading dose of Amiodarone. When the afib subsided I was released on Coreg, Amiodarone, Coumadin, Lasix k-dur and digitalis. I had to take Lovenox shots until my INR came up. (awful!).

During the next month I had several more dizzy weak and fainting episodes, one culminating in an air rescue (I live in the country) for a pulse of 20 and no bp. I got some shocks for that too. This time in the hospital, I was given a pacemaker so I could take the meds! I was taken off the Amiodarone and digitalis. Three weeks later I was back in Afib. Another echo. Back on the Amiodarone.

NOW….Afib gone for six months. Recovering from operation. Did cardia rehab. Still have click and murmur which is from a severely leaky valve. I tire very easily. It is really hard to hang up loads of laundry as fast as I used to. I have had 2 echos since the bypass which showed the severely leaky valve. I am scheduled for a TEE trans-esophageal echocardiogram 1st week in November.

Amiodarone is an extremely toxic drug and I have been having a side effect from it. My eyes are extremely sensitive to light as is my skin. Also at nights, headlights, traffic and streetlights have halos around them. Headlights are the worst, the halos are like rays of light that shoot way out. It is very disorienting to drive at night. After 6 months out of afib I asked to go off the Amiodarone. Been off about three weeks and had one afib episode that woke me up at 3 am and lasted until about 7am. I have the kind of pacemaker that tracks afib, but not the one that shocks it.

I do not want to go back on Amiodarone. My card seems to love it. I wonder what other options there are? I want to talk about this with my card when I get the TEE in a couple of weeks. I sure hope get some ideas of what else I can do before then.



 
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Old 10-24-2003, 06:01 AM   #2
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KTUC HB User
Unhappy

I am so sorry that on a heart board a person with a legitimate question does not get one single answer. Meanwhile another person with anyhing BUT heart issues is the center of attention. I used to follow his line, first with naivite, then with astonishment at how he knows how to rake people in.

Well I decided to edit this after the entire situation was corrected. I am so appreciative to see this people posting on this board getting back to heart issues!

Bless your hearts



[This message has been edited by KTUC (edited 10-28-2003).]

 
Old 10-24-2003, 06:53 AM   #3
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Im sorry
i hope you get the answers you need

[This message has been edited by gigi777 (edited 10-24-2003).]

 
Old 10-24-2003, 07:12 AM   #4
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You were not cold, KTUC, to Joe. Joe is messed up. I am so sorry for all you went through. I was going crazy just with my PACs (which are nothing) and I can't imagine how going through that is. I really hope you find some answers and that you are okay.

 
Old 10-24-2003, 08:11 AM   #5
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Hi KTUC:

I'm afraid I can offer no useful information regarding treatment options, nor can I relate to your specific symptoms. I do know that the drug you've been prescribed causes corneal haziness (similar to what I have) and that it might account for the poor night vision you experience.
I do hope your cardio comes up with a workable plan and that you're feeling better soon.
Nancy

Last edited by Administrator; 11-10-2003 at 12:32 PM. Reason: members may NOT decide which member problems are "real or imagined". You may not decide who may post or where. No one is obligated to reply to your posts.

 
Old 10-24-2003, 12:29 PM   #6
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KTUC HB User
Unhappy

Thanks for your responses. Please tell me more about your heart issues.

I am early retired on ssd. I spend a lot of time at my computer, and basically like the easy format of healthboards.com. I think us old folks are often really good at figuring out people and character. Sometimes I comment to people on forums who seem to be acting out for lack of a better word. I really read their entries carefully at first (this one I started skimming, because it was always the same ol same ol) I try to hold him to the items he presented as facts to us.

Also I take an online vow to respond to some of the other folks who have been ignored on this forum.

Last edited by Administrator; 11-10-2003 at 12:34 PM. Reason: You do not have a "territory" on this website. Make your posts without implicating other members. You may not decide others' legitimacy!

 
Old 10-24-2003, 02:11 PM   #7
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Yeah I know what you mean. I was born with transpostion of the grat vessels. Since I was so young and the procedure was new they "fixed" my blood to flow oppisite. My cardiologist told me that I might have to have a transplant by 30 or 40, but they aren't sure yet. I was one of the first with this procedure so all the facts aren't there yet. I take Procanibid for fib and I hate the side effects, I am sorta getting used to them now, but hang in there it may just take your body time to get used to them. What kind of Pacemaker do you have? Just out of curiosity. Now when I go into fib they just pace me out of it. With congestive heart failure or anything for that matter it is very dangerous to go into afib. So I would suggest to stay on the meds. GOOD LUCK though I wish you all the best.

 
Old 10-25-2003, 11:47 AM   #8
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KTUC HB User
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I originally had an analysis of another poster here who was literally hijacking this entire forum and had people split into opposition camps. I never flamed or accused him, but I did question his motives and his payoff for the way he posted. It appears he deleted his entire thread, so I am editing this post to reflect the fact that it is like he was never here.

So welcome back all heart posters. And thanks for responding! I am so very grateful.

[This message has been edited by KTUC (edited 10-28-2003).]

 
Old 10-25-2003, 02:56 PM   #9
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I'm sorry it's transpostion of the "great" vessels. I was born with it. Now they correct the valves at birth but when I was younger it was a 50 50 chance that I would live so my mom didn't want to risk it. By the way I am 21 years old. Almost 22. I just wnet into fib about 2 months ago and it scared the heck out of me. It felt like I was haveing a heart attack so this is the first board I have been to. I like it. I don't really like that joe kid. But anyway. If my fib starts acting up again I have to get the thing where they scrap your heart tissue. I actually go to school and work, 30 hours a week. I get tired alot but I think growing up with a heart condition has helped me cope with it better. So I know when it's time to stop, or when I can keep moving. I have had a couple operations when I was born and in 1986 I got my first pacemaker, I kept fainting. Well actually my heart was stopping but nobody knew. Then I got another pacemaker when I was 12 and. at 17 they moved my pacer and my leads up to my right shoulder blade. It's gross cause I can feel it now. I am really glad you guys are here to talk... I really think talking about this stuff helps...ALOT. Anyway I gotta study good luck to all of you....I'll be back on later.

 
Old 10-25-2003, 05:14 PM   #10
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Unhappy

Quote:
Originally posted by KTUC:
I am so sorry that on a heart board a person with a legitimate question does not get one single answer.

I agree, KTUC. This is my third (?) post here. My first post I was seeking a little information/opinions about my health concerns. I have not had one response. I do pray you get the help you expected from this board, and for your health to improve. God bless you.

~aggelos

 
Old 10-27-2003, 06:10 AM   #11
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Hi Aggelos

I appreciate your response! I also decided i am going to try to respond to posts with legitimate heart questions, not to answer the question, but to respond with what I might know.

Anyway, I am looking you up to see your questions.
This is a heart board and people should be able to communicate about the realities of living with heart disease, but i guess we are boring compared to the drama on another thread!

 
Old 10-27-2003, 11:52 AM   #12
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KTUC: Your story is heart breaking!! I'm so sorry about all of your problems. I am new to the group. I am disabled with a prosthetic mitral valve and atrial fib. A few things jumped out at me. First of all, seeing halos of light is not from Amiodorone, but is the classic symptom of Digitalis toxicity, which can cause other arryhthmias. It would be difficult to manage a therapeutic blood level with kidney and liver failure. I don't know which of those two organs filters digitalis, but you need a Dig level drawn. Secondly, when you have your TEE, find out what your ejection fraction is and hope it has come up from 15%, which is dangerously low, and it would be difficult to keep you out of CHF. Sorry about your problems KTUC, and be sure to ask for a Dig level.
pammie416


Please read below

Last edited by Administrator; 11-10-2003 at 02:53 PM. Reason: Healthcare profession titles do not belong on this PEER support community.

 
Old 10-27-2003, 11:57 AM   #13
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KTUC: I forgot one. Thirdly: Amiodorone is hepatotoxic and you should also have liver enzymes checked. There are many alternatives to Amiodorone. There is Flecainide, Rythmol, Sotolol, Dofetelide. You can't stay on Amiodorone very long, especially if you already have some liver failure. It also causes lung changes. You are supposed to get pulmonary function studies done before starting this drug, so that they can accurately measure changes.
Pammie

 
Old 10-27-2003, 06:02 PM   #14
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Hi!

Does someone else here have liver and kidney problems? I'm interested to hear how you are doing, if so. I missed that in your story, KTUC.

Hope all is going well for you.

Hugs,

Pam

 
Old 10-28-2003, 08:02 AM   #15
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Hi KTUC and others:
I may have confused Amiodorone with the name of another drug, but was sure it was the drug the opthomalogist asked me if I was taking to account for my corneal haziness. My apologies if this information was inaccurate.
Pam, how are you doing? Were you able to find any answers to my question about Fabry's? I know you've been preoccupied with other concerns.
Nancy


 
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