I'm New to the Site (Real Long)

Hi to all, Well I'm a 25 yr old who has SVT.It started out first with IST then after the 3rd ablation It was swicthed to SVT I am on my 4th Sinus Modification w/Ablations around the sinus node and the docs are still puzzled why my HR still hasn't budged. I am at the Max for Beta Blockers, and Calcuim Channel Blockers, and lets not forget they added some Xanax to see if that would work.. My HR was so bad cause me to deliver my daughter at 27weeks. So Now I have the 4th Ablation on the 18 th and the docs still feels that I'm too young to have a Pacemaker placed in. He says, he doesn't want me to have " the BURDEN" of having a pacemaker. I have no Sex drive what so ever from the high dose of atenolol(side effect), Was advised "never" to get pregnant again, due to my heart. Every Month I go to get blood drawn tocheck my CK Levels which indicates that there has been some damage to the heart muscles and can also indicate that your muscles have experienced heavy use. Well my Levels haven't droped below 200 and the normal for Females is 67. Doc states to me that he will be more aggresive this time (which he should've been the other time he did it) therefor I might end up with a pacemaker, but he really doesn't want too put me through this. So my question to all of you is should I put my foot down and let him know that I can't deal with this anymore to go ahead and place it in, or am I really to young and he is right that it would be a burden on me. I have had this problem for 7yrs now, with every test done to man on me...I do want more kids, I do want to be able to make love to my husband and be in the mood. Me and my husband have weighed the pros with the cons. What am I to do.. I explained this to him and he still isn't understanding me.He reads what the other Doc who was the Head EP stated that, he explained to me that I will end up with a pacemaker the 2nd time i had my ablation.I mean, My heart rate was the reason for my medical discharged from the AirForce.I feel like crap, mostly from the drugs.SO Any Advise or Wisdom about having SVT or a Pacemaker and life afterward with a pacemaker will be so Thankful.. Thx in Advance. Charly


5 Comments

charly's heart rate

by luckyloo - 2007-07-09 09:07:12

dear charly,

has your dr. checked you for an electrolyte imbalance by any chance? i get SVT when my potassium runs on the low side. i have andersen-tawil syndrome, a potassium ion channel disorder. there are other disorders that can affect your heart. i hope your dr. has checked some of the rare ones out. dr's tend to neglect rare disorders because they just can't seem to believe one may have fallen in their lap. ion channel disorders are really getting recognition these days. try looking that up and see if it could be you. elevated CK levels can also indicate other muscle damage, not just heart. with ATS my CK levels go up with my attacks (weakness, fatigue sometimes with partial paralysis (temporary) IV potassium calms my heart (i get other ventricular arrythmias too along with a form of long QT syndrome) i also take prescription strength oral potassium daily.

i have a defib/pacer in. you're never too young for a pacer. if you need it, you need it. i had my first one in at age 36. i have talked to many woman who have had children with ICD/pacers. it'd be nice to get off meds and control your heart...i'm sure that's why dr.'s don't want you to have more kids.

anyway...have them check your electrolytes! preferably when your heart is acting up.

luckyloo

Welcome Charly!

by tcrabtree85 - 2007-07-09 09:07:45

Wow! First before I say anymore welcome to the club. This place has helped me on my journey with having a heart condition a lot. I have right on with you the same exact condition. I won't go into all details on this site but I got my pm on my 2nd ablation. They were surprised after that for my tachy to come right back I went in three weeks ago for my last ablation and got my SA Node completely taken out.
It's hard when they don't really know much how to treat tachy in young women. I am very close to your age I am 21 and you will fine on this site that more people are close to your age or are a little younger with a pacemaker. I wish you luck. If you would like somebody to talk to feel free to send me a private message. I would love to hear more about what is going on with you. You will be in my prayers!
Blessings,
Tammy

welcome

by Shell - 2007-07-10 03:07:21

Welcome to the club. Hopefully you'll find all kinds of info. here. I'm 35 and got my PM a little over a year ago. It definitely is not a burden to me. In fact, I have more energy (which my husband enjoys), can do more things with my kids and have weight because of having the energy. The only thing that I can think of as being a "burden" is they said mine is doing a lot of work and the battery will run out closer to the 5 year mark than the 10 year. Is your age the only thing that's keeping your doctor from giving you a PM? I would ask him that if I was 60 and had the same conditions would you recommend I get a PM. f the answer is yes that I would insist on getting one. If you still won't give you one I would get a second opinon and see if another doctor will help. I just think alot of people (even some doctors) associate PM with the elderly and that's not the case.Any one, from infants on up can have one. I know some people thinks it's strange I have one. I was diagnosed with a complete heart block one month after birth (am actually lucky that I went so long without a PM) and when I was younger going to children's hospital for checks it wasn't bad but now when I do the cardiologist for appointmens, holter monitors, etc. sometimes I get looks from other patients (usually older) wondering what I'm doing there.

The only other burden that you may have is the limits you have right after (usually about 6 weeks) on what you can do. You didn't say how old you daughter is but you won't be able to lift her during your recovery (but after no problem) How is she anyway, being born so early do you have to deal withany medical problems with her?

DID I have test, girl you just don't know. lol

by Oliviasmom - 2007-07-10 03:07:41

Yep Had that test done, I was Active Duty, Trust me the military made sure That all there t's were crossed and I's were dotted before they paid me to get out and that this wouldn't just dissappear next wk.. Yes the CK test they run is for the heart it is three ck test one for the Heart one for the brain and the other for skeleton. I have the one for heart done which is the same one they check after you have a heart attack.. They check mines due to me having an enlarge heart and the Angina.. I just had a redo in Urine test to check and see something about adrenalin. Plus a repeat thyroid, my 3rd MRI of the brain to rule our any Tumors, that might have popped up just in case the first three doc might have missed them, So yep I did tilt table cause one said mayby pots, no Neurocardiogenic syncope,no no she had MVP, cause one Doc thought he heard a murmur, to IST, then sent me to specialist to burn the Sa nobe which then switced my heart to now SVT. Then saying no it's the Av nobe, So I'm like burn it all put the darn PM in and send me on my way SEVEN years is along time to be going through this.So sweetie trust me I hsv been poked and every test was performed. The doctors Cardio basicaly had me admitted to the hospital for 6wks on bedrest ,pressure cuffs, no stressfull visitors, for me to be waken up in the middle of the nite due to my hr being in the 200's. So Am I wrong for wanting this PM? Do you guys feel like Having the PM is a burden on yourself?

charly's heart

by luckyloo - 2007-07-10 04:07:58

hi charly,

'no , my ICD/pacer is not a burden. i still played tennis, golfed, ran ect. with it. the only pain is future surgeries to replace leads (15-20 yrs or if they break) and battery (5-7 years)

if it will help you, and get you off meds, i say go for it. just get an experienced dr. and DO NOT let residents/fellows practice on you!!!!!!!

luckyloo

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I am just grateful to God that I lived long enough to have my ICD put in. So many people are not as lucky as us; even though we sometimes don't feel lucky.