my sister

My sister is a 44 w/f who has beem in and out of icu for afib for the last few years. At one poi.nt she could not even lift her body out of the rexliner and then she was by herself and went to restroom and couldnt lift herself off toilet so she.managed to get on floor and was gonna scoot but she could not move i had to call 911 to get fire dept to extract her off the bathroom floor when i fou.d her....shes in ICU again and this is about the 30th time in 3 years the doctor said only 30% of her heart is working so they cannot put a difibulator in? Why not? Does this mean they are gonna let her lay there until she dies? Does this mean she is dying? And its to late for a pacemaker? Isnt there something they can do like a temporary unimplanted device until she is strong enough to have it implanted? Im so confused and just want a heads up...she is in dallas amd im in houston, so i do.t know if the drs are saying shes about to die and device wont help now or can she get better and then have the device put in....im a single mom of special needs child w/ absolutely no help i feel so bad cause i cant be there for her but i do want to be thereif shes gonna die and not just get a phone call for the nurse.....whatdo i do.....is she dying ...i cant get a straight answer

2 Comments

answers

by Tracey_E - 2013-04-20 10:04:58

I can't give you any answers, but maybe we can help you with the questions to ask so you can better understand what is going on. Have they tossed around any other diagnoses other than afib, maybe myopathy or congestive heart failure? Can you go to her for a few days to talk to the drs in person and get a better understanding what is going on? Because it sounds to me like more than just afib. I'm no dr, that's just a guess but you're more likely to get the full story in person than over the phone. Can your sister talk on the phone?

Only 30% working, does that mean her ejection fraction is 30% or the heart is diseased and not all of it is functioning? EF is how efficiently the heart beats. If the EF is too low, the pm won't help. It can send a signal to beat but it can't make the heart muscle contract.

Afib is an electrical problem, not a structural or plumbing problem (what causes a low EF), it means the atria quivers instead of contracting. It's normally treated with meds. Sometimes they hospitalize while starting a new medication or changing the dosage so we can be monitored to see how it works. If that doesn't work, the next thing to try is an ablation. Has she had ablations yet?

Reasons to get a pacemaker for afib would be 1) the medication level needed is making the heart rate too low or 2) sometimes when they ablate it works a little too well and the heart goes from too fast to too slow or 3) there are some new pacemakers that try to pace the heart out of afib. All of that assumes the heart is otherwise healthy and capable of beating efficiently.

An icd would shock the heart out of a dangerously fast rhythm. Afib is not generally treated with icd.

Hope that helps. Good luck to you and your sister.

Possibility?

by Many Blessings - 2013-04-20 11:04:08

Hi Susan J,

I have been in chronic A-fib since 1987. Up until my CRT-P with AV node ablation last year, it was chronic, uncontrolled, high rate A-fib. I also have cardiomyopathy with heart failure, on top of several other heart problems (most since birth). Your sister may be in a similar situation.

I had a CRT-P with AV-node ablation a year ago. According to my surgeon, EP, and cardiologists, I am not an ICD candidate because the ICD would not be able to tell the difference between my chronic A-fib, and life threatening arrhythmias (VT, VF, etc.) and would be firing all of the time, putting me at even more risk. I wonder if this could be the same reason they aren't considering an ICD for your sister? It sounds like a possibility, and something you may want to ask them.

As for the CRT-P with AV Node ablation (or any other PM), it is not a cure for A-fib, cardiomyopathy, CHF, or any other heart issues that I have. It was done only to increase the efficiency of my heart, which would hopefully, increase my EF (which it has.) I wonder if this could be an option for your sister?

For me (and a lot of others) to be a candidate for this procedure, I had to fall under a strict criteria (EF lower than 30, less than a year to live without a transplant, highest level of CHF & cardiomyopathy, tried every medication and procedure out there, and more.) It is a last resort prior to a transplant in "most" cases. It is done to make you more comfortable & to hopefully add some extra years to your life. You also have to be mentally prepared since you are then 100% paced/dependent. Once it's done, there is absolutely no turning back. You cannot survive long without the CRT-P.

If it helps, I have managed to live an extremely active life with all of the issues I've stated above both before my procedure, and afterwards (there was a 2 year period prior to my CRT-P that I felt like total #$% a lot of the time, and was in the hospital quite often with CHF.) I also managed to work full time over all of these years (and still do.) I know there are many others out here that do the same. But, there are others that cannot. I think it just depends on how well your body can handle things.

My best advice for your sister (and I know it's different for everyone) is to look into a CRT-P w/AV Node ablation, stay as positive as she can, stay active if possible, be grateful, keep her weight down, eat healthy, don't drink or smoke EVER, exercise every day (even if she can only do a yoga video), get some fresh air & go out and enjoy nature! There are a LOT of others on this site, in my same situation, and that had my same procedure and are doing great as well. I follow everything I stated above and more! I know for some, and depending on the situation, even these things might not help, so please don't think I'm assuming she isn't taking care of herself.

As for your yourself, please, please, please try to stay positive. Don't panic, try and find out as many answers as you can, and take what all of us are saying, and ask her doctor if any of these things are options for her. You can only help her if you stay calm and healthy yourself.

Most of us out here have been through a lot and have a pretty serious cardiac history. ALL of us out here can relate in some way, and can hopefully give you some good advice.

Take care, and keep posting your questions. You are going to get a lot of answers!

I hope this has helped, at least some.

Blessings to you both

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