So nice to not have to feel alone

Hi all, this is new to me but after spending the last hour reading your posts, it feel so good to know I am not abnormal or crazy with the heart problems I have had for the last 4 years. I have had 4 sv node ablations to date and next week I go for a total av or sv ablation and then of course permanent PM. The dr is so hesitant to make me solely pacemaker dependent - but how I am living is not living! Resting is 130 and any stress or normal activity leaves me exhausted and at 178 plus. I too feel that each time I have an ablation I develop a further complication than what I begun with. I now have a irregular rhythm and yes of course, a very fast rate still! Am I being stupid to want to push for the pacemaker?? My dr says my age is his biggest worry as I am 38. I have been on every medication and yes it helps for a bit but nothing keeps my heart from slowing down.

10 Comments

best wishes

by mike thurston - 2013-06-02 03:06:31

Chez, My AV Node was totally ablated 6 yrs. ago. For me it has been a blessing. Certainly not the situation I wanted but it finally became my only option. I am in permanent afib and had 2 heart attacks with significant damage to my heart. It certainly is a huge step and every situation is different. I was 55 at the time of the abalation and for me having the ICD part is more worriesome than being PM dependent. Best you can do is make informed choices and have a great Doctor. I know how you feel about how hard it is to live with irregular rhythmns, it was killing me and I feel my EP and I made the right choice. Good Luck.

Thanks

by Chez - 2013-06-02 03:06:47

Thank you Mike, I feel so encouraged to read your post. The damage to my heart is actually what concerns me because it can't cope sitting at an average day and night of 140. I feel if My body and i have endured this for 4 years now we can together cope with the pacemaker. The dr says what will really work is the ablation of AV and PM- but now he's going to first try the sv giving me part dependency on the PM. It's worrying when even the drs not sure! He keeps saying he will only know when he gets in theatre. That makes me scared. I don't know what o prepare for. Thanks for your help.

Thanks

by Chez - 2013-06-02 03:06:47

Thank you Mike, I feel so encouraged to read your post. The damage to my heart is actually what concerns me because it can't cope sitting at an average day and night of 140. I feel if My body and i have endured this for 4 years now we can together cope with the pacemaker. The dr says what will really work is the ablation of AV and PM- but now he's going to first try the sv giving me part dependency on the PM. It's worrying when even the drs not sure! He keeps saying he will only know when he gets in theatre. That makes me scared. I don't know what o prepare for. Thanks for your help.

mike

by BStanding56 - 2013-06-02 03:06:50

Did you have the heart attacks before the pacemaker was fitted? and how are you now? regards Beth

AV Node ablation

by donr - 2013-06-02 03:06:51

Quick, like a jackrabbit on a date, send a Pvt Msg to Janey L in London, UK

She's BTDT several times. She's 50, but can give you a good perspective on the procedure.

You gotta be fast because it is almost bed time for her & she will not be available tomorrow - you need an answer tonight.

I'l warn her that it is coming.

Don

Thank you

by Chez - 2013-06-02 03:06:58

I appreciate this- thank you Don

Age?

by Chels - 2013-06-03 12:06:46

I don't have the same heart problems as you but I don't understand why he is reluctant because of your age? With the technology these days people can go their entire lives with pacemakers. It's been 22 years for me. I know the professionals know more than me but it doesn't make sense. Like you said, you're miserable right now, wouldn't he want to let you feel like a 38 year old again?!

Ageism?

by Zia - 2013-06-03 12:06:48

All this emphasis on age makes no sense to me. Either you need it or you don't, end of message. After all, age is only a number and, as already mentioned, many folks here have had a PM for years, some almost since birth. So, if you're sure you need it, get it already. End of rant, I'll fold my soapbox and move on.
Z

chez im 37 we sound alike

by my4turtles - 2013-06-03 12:06:57

You sound very much like me , i have lost count of how many ablations i have had. In the last 3 years i have had 13 heart surgeries / procedures as well as my pacemaker.. my heart would get up to 300bpm and pass out
I have also been on all kinds of heart meds .. I have very low blood pressure to to start out with and with being on them in drops my pressure even lower which is not a great fix. The Drs are thinking of making me pacemaker dependent as im now getting irregular rhythms in the lower chamber and the only way to fix this one is to make me 100% dependent.. They are holding off because my age which gets me angry.. I don’t feel like my age . Im tired, i cant run, i cant exercise , im exhausted so at this point what does my age have to do with it. I have said over and over also that when they try to fix one thing another thing happens and it sounds like the same thing is happening to you. I have been told being dependent will help this so i hope if that’s the case for you ,your Dr will go ahead and not look at your age but your health as i know how frustrating it is

lack of confidece in current medical care?

by Hope - 2013-06-04 02:06:58

Hi! Chez, Reading between the lines of your post, you do not seem to have confidence in your present medical care. At best, there seems to be a communication problem. Perhaps, a second opinion would be wise to help you make the best decision for yourself. Keep us posted on your progress. We care. Hopeful Heart

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