4th ablation....

[PearlSantana]

I was diagnosed with SVTs when I was 14 years old, it was never active until I had my little one. I had her at Kaiser and the level of irresponsibility (tu put it kindly) at that hospital really shocked me. Well, my heart rate was going crazy, they made me have a natural birth which was not good for me and made me wait 2 days in and out of SVT episodes of 250 bpm. I finally had my little one and the stress on my body from them having made me wait two days messed my heart up. I ended up having to have ablations. The Electrophysiologist was so rude and full of himself I was shocked. He even told my family that I was only having the ablation done because I wanted to, not because I needed it. After he got to see one of the episodes I had he changed his mind and became a bit more humble towards my case. Well, he did the first one but didn't know where the electrical signal was coming from, they had me there for 6 hours before giving up. After that I had two more and they did burn some spots but didn't find the source of the SVTs. It got better but I still have problems with it.

Every now and then when my magnesium gets down by a hairline or when I am stressed or have caffeine I go into a crazy SVT episode where my heart stays between 150 and 200 and won't go down until they shoot me through an IV with some beta blocker (hi never I am on at the time). Yesterday I had an episode that scared me as the rhythm wouldn't slow, even after 2 shots of metoprolol and a 5 ml shot of adenosine then another 12 ml. Now, I'm sure some of you have had adenosine and know how it is no fun.

I am seeing a group of Electrophysiologists at Stanford hospital, they are also geneticists and genetic counselors and experts and they want to do another ablation. I will be honest, I am scared. Apparently the problem is on the left side on the upper chambers of my heart so that makes it a bit more dangerous (that it's on the left side) and it also makes it a bit scary. The death risk is 1 maybe 2 in 10,000 and that is only for older people, I am in my 30s but I have a child. I am everything my child has and my child is everything I have and as every parent, I fear my child not having me there. I guess I am ultimately looking for someone to say "Pearl, stop being silly. You will be fine." The doctor who will be doing the ablation has done 100s before and never lost anyone so that's comforting but has he done an ablation on someone who's had 2 before and one attempted? Do the more ablations you have make it more dangerous to have another one? Those are all things playing in my mind and sanity.
Ugh!

[researcher09]

Sorry to hear about your problems with Kaiser.  Was it their Santa Clara center that did the ablation?  I thought prior to this that they did well for their patients but your story makes me want to ask their director questions.  SVT should not be difficult to map and ablate.  Success rates are well over 90% at experienced centers and major complication rare.

[PearlSantana]

Yeah see, the doctor who did it was so unprofessional and rude about the entire situation. I was married to someone very abusive at the time who saw all I went through and a month after I had my daughter I was getting ready for the ablation he came to me (the ex) and told me he wanted me to get pregnant again. I said I wouldn't, I was afraid and wouldn't risk my life and not being there for the little one I had just had. He thought my body was his property. He became very angry and abusive after I said that. On the day of my first ablation he asked the EP if I could get pregnant again and the EP said to my ex "Yes, she can get pregnant and have as many kids as she wants. She doesn't need this ablation she is only doing it because she wants to." My ex was furious with me afterwards.

This doctor took me in saying "I know exactly what this is, we are going to fix it!" They told me not to take my med which I didn't and by the time I got to the hospital my her date was so fast and blood pressure so low (one trying to compensate the other) that I was almost fainting. They had to carry me in the room and put me on a bed. This EP was standing there looking scared, shocked, puzzled. Ordering people around on how to lower my heart rate and nothing would do. Finally it calms down and they control it. They take me in, to do the ablation, had me under for SIX HOURS and found nothing. Turns out they didn't really know what they were doing. Right there and then, they should've told Kaiser "Look, her case is different and we can't handle it. Let's refer her to someone who can." But NOPE! They ablated on me twice more, this time on the left side. They found spots to burn but never the actual root.

I felt like and still feel like money to them is everything, that they will do anything, even risk the lives of patients like they risked mine all 4 times just to save a buck. Later I was told that Kaiser pushes natural labor on women not because they think it's healthier but because it saves them money. The proof is in the fact that the day I went to the hospital (two days before I was supposed to give birth) complaining of chest pain, they had me in the ER then transferred me to labor dept, then my heart went crazy and a cardiologist took me to do some tests, the cardiologist said "You need to stay here overnight so we can monitor you." then sent me back to labor felt (I forget what the floor is called). After that, a idiot midwife comes in and says to me "OK, you aren't in labor we are sending you home." I said to her I wasn't going anywhere that my cardiologist had said I shouldn't be discharged. You know what she said? "OK, let me look at your chart and see what the notes are." How dangerous and just really stupid is that? Wanting to discharge and treat a patient BEFORE you even go over their charts and notes to see what's going on and who that patient is. She didn't even know my name up till then.

The only reason I didn't file a lawsuit was because I was going through so freaking much I just wanted to get healthy and not stress but that midwife has no place practicing. Kaiser needs a serious wake up call!

[researcher09]

Oh boy.  That's the second mid wife Kaiser story I have heard.  In my friend's case, the daughter nearly died from bleeding complications after birth of a large baby.  Something is not right with the way they handle patients and communicate between specialists.  I am going to copy and send your note to Kaiser Santa Clara.  By the way, most of their EP ablation doctors are Stanford trained and Stanford sends fellows there to train so they will be interested in your story.

[PearlSantana]

Yeah I nearly died too because I lost too much blood. Needed two bags after all that and it just screwed up my body. I don't know if they're Stanford trained, they sure didn't act like it. They acted like they'd just gotten out of school and had no idea what on earth they were doing. Weren't able to find the source or tooth of the SVTs either.

[tom_h]

I wouldn't let the word "paroxysmal" shake you up.  It's just a term used for sudden, abrupt episodes, which is typical for SVT.  I had left side SVT for 54 years before getting it fixed 5 years ago.  Once started, mine would run on and on, for hours if allowed.  I learned at an early age to slow mine by using Valsalva, and utilized this mrthod to convett mu episodes all of my life.  Left side SVT is the accessory path kind and is often associated with Wolff-Parkinson-White (WPW) Syndrome.  This type of Atrio Ventricular Reciprocating Tachycardia (AVRT) I would think is easier to find and ablate than AVNRT where the pathway is usually close to and even part of the AV node.  To access the left side involves puncturing the septal wall of the atria, and I believe therein lies the possible danger in this procedure.  I was given a dose of Heparin, a short acting anticoagulant used to prevent possible life threatening clots from forming.  I don't think you should get shook up about this.  Make sure you are happy with your electrophysiologist, and can place your complete trust in him.  If you can't, choose another one!

[PearlSantana]

Thank you Tom, I really appreciate your reply. I am very happy with him as I know he is very capable and knows what he is doing. It's just the idea of doing another one and what if this one doesn't work either.... I mean, there is a HUGE, massive difference between the ones done at Kaiser and this one which will be done at Stanford. Stanford is a world university with some of the best doctors in the country so I know I am in good hands. If I had WPW they would've known it already by now though, no? I've done hundreds of EKGs, would it have shown? Is paroxysmal SVT the same as WPW?

[MichelleP_3811]

Paroxysmal just means that is comes and goes. It isn't all the time.  Which is different from types of svt which can be avnrt, avrt, wpw, pat.  The name indicates, for the most part, where the svt problem is.  Ablations in the atria are extremely safe.  The puncture, if necessary, it may not be necessary, is the biggest risk really for left sided ablations.  No one can give you a perfect guarantee but odds are more in your favor for a successful ablation than not.  Trust your instincts on whether an ablation is right for you.  However, if you do not get it corrected it will not go away.  It may get worse but then again it may not.   If you learn vasovagal maneuvers like Tom mentioned and learn how to stop your episodes on your own then you may be able to hold off doing the ablation until your child is older.  Do what feels right for you.  Whatever you do try to stay as calm as you can when an episode happens.  Take care and best of luck whatever you decide.

[PearlSantana]

Thank you so much Michelle, I know an ablation feels right. The maneuvers don't work for me, the only thing that works is a bucket of ice cold water with ice in it and I put my face in it. When I was in the ER the other night not even adenosine would bring down my heart rate but that did it. I will talk to my doctor more and see what more I can find out. I found out last night that the doctor performing the ablation is a professor of cardiology and director of his department so that was more comforting.

[MichelleP_3811]

Best of luck with it and let us know when it is scheduled.  I will keep you in my prayers just for good measures.

[PearlSantana]

Does the number of ablations you've had it make to more dangerous to have another one? I have had 2 ablations and 1 study, would having this other one be more dangerous?

[PearlSantana]

And thank you Michelle for your prayers and support. Sorry I didn't thank you before, was running around at work. Ugh, bills bills work work :) why can't we all just love and not have to work eh?! :)

[MichelleP_3811]

I know, work is a hassle.  I don't know the statistics about the number of ablations one has.  I suspect that they are ablating in different spots because they were unable to find the spot that was causing you trouble or it is possible you had multiple spots.  That is not out of the question.  But ablations for the kind of svt we have are very minimal.  Meaning the spot that ablate is very tiny so it shouldn't cause too much trouble.  I suspect the new EP will ablate in a whole other spot.  There is always a risk but it is generally minimal.  

[PearlSantana]

Also, for the first time last night I saw the word paroxysmal Supraventricular tachycardia which was scary. How did they get to that? Did they see it on an ekg?