Youngest Daughter feeling heart palpitations

All posts from Jan 1st 2011 to Dec, 31 2011

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Suzanne
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Re: Youngest Daughter feeling heart palpitations

Post by Suzanne » October 24th, 2011, 10:44 pm

Okay, another trip to the ER tonight.

Luckily, the local Hospital is only 5 minutes from our house.

When we got there, there was only one person in front of house, waiting to see the triage nurse. He didn't look in distress, so I told him I just needed to speak to the nurse quickly, before he saw her...I know that was kind of selfish, but I just wanted Jenna to be seen as quickly as possible, in hopes of capturing the palpitations she was experiencing. As soon as Jenna sat down in the chair, in the triage area, her palpitaions stopped! tanty

The triage nurse, that was taking our info, was so nice. And, we only had to wait about 10 minutes for Jenna to be seen by the Doctor! The Doctor was great too! She listened to Jenna's heart, which was now in sinus rhythm...66 bpm. The Doctor said she needed a holter monitor. I explained to her that I got a call today, from this same hospital, and that Jenna has an appointment to get a 72 hour holter next Monday (the 31st) and she has an appointment at another hospital to get a loop recorder on Nov. 15th. She said she will put in a request to get a holter sooner, because she feels a week is too long to wait. She said she can't guarantee anything, but she will try. She explained VT to us and SVT, etc. She told Jenna that if she is at school, and she feels palpitations, she should have the school call an ambulance. She said the ambulance people could print off a strip and capture what she's experiencing. She also offered to refer Jenna to a Pediatric Cardiologist. I thanked her, but told her I would prefer my EP to give his referral. She also offered to set up an appointment for an echo, but I told her that she was already scheduled for that too. I told her my frustrations, that all we want is either a holter or a loop recorder a.s.a.p., which she totally understood. This was Jenna's 4th time today, experiencing palpitations. Again, maybe it's only SVT...we still don't know....

I have an appointment on Thursday,for Jenna, with her Pediatrician, so we'll see what he has to say.
~ Suzanne ~

St Jude ICD and Lead Implanted Feb.20/09
8 Shock Storm March 21/09
Lead Dislodged, so Replaced with Medtronic Lead June 16/09
ICD and Lead Explanted Nov.23/09
Medtronic Reveal XT (Cardiac Monitor) Implanted Jan.25/10...explanted and new one reinserted on July 21/11

Cardiac Monitor explanted Sept.9/14

KarenHall

Re: Youngest Daughter feeling heart palpitations

Post by KarenHall » October 25th, 2011, 12:54 am

Good luck with it all. I can't imagine how awful this is for you both. I'm so happy that you fianlly found someone to take it seriously as well.

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Suzanne
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Re: Youngest Daughter feeling heart palpitations

Post by Suzanne » October 25th, 2011, 10:06 am

I've left work and am on my way to the hospital. The school secretary was kind enough to bring Jenna there, and is waiting there with her, until I get there.
Jenna's been having palpitations and feels lightheaded and on and off chest pains since she got to school this morning.
I hope their able to hook her up to a monitor...i'll sit in the ER all day today, if I have to, hoping to capture what ever is happening.
~ Suzanne ~

St Jude ICD and Lead Implanted Feb.20/09
8 Shock Storm March 21/09
Lead Dislodged, so Replaced with Medtronic Lead June 16/09
ICD and Lead Explanted Nov.23/09
Medtronic Reveal XT (Cardiac Monitor) Implanted Jan.25/10...explanted and new one reinserted on July 21/11

Cardiac Monitor explanted Sept.9/14

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CeeBee
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Re: Youngest Daughter feeling heart palpitations

Post by CeeBee » October 25th, 2011, 11:44 am

Suzanne, I missed this thread somehow, but gee, I'm sorry to hear that your daughter is having problems. Yeesh. Best of luck! I'm thinking of you.
Diagnosed with HCM 2008; ICD 2009
Female, live in Midwest
College professor, mystery reader; take college students abroad at least twice a year. No shocks from that -- yet.
Do our ICDs mean we'll survive a zombie apocalypse??

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Carl Portman
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Re: Youngest Daughter feeling heart palpitations

Post by Carl Portman » October 25th, 2011, 2:12 pm

Your daughter and indeed you have been in my head whilst in hospital. It's bad enough for us adults but much be devastating for young people. There is one thankful aspect though - she is lucky enough to have YOU by her side and that is invaluable. Bright blessings, and give your daughter a big hug from me and Sue xx
Right Ventricular Dysplasia
St. Jude ICD implanted 28 September 2009
Ablation on 5th January 2011
Ablation on 26 October 2011
Sotalol and Mexilitine tablets
St Jude generator replacement on 02 January 2014

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Suzanne
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Re: Youngest Daughter feeling heart palpitations

Post by Suzanne » October 25th, 2011, 6:18 pm

Thanks Ceebee :)

Thanks Carl...all the best for tomorrow!!

I am so tired right now. My whole body feels exhausted.

I have some good news though! When I got to the hospital Jenna had already been seen by the Doctor and had an ECG. Her palpitations had already stopped prior. Jenna was sitting in the waiting area with the School's Administrator and told me the Doctor had requested I see him when I arrived.

I left Jenna in the waiting area, so I could speak to him alone. He told me the usual, that her ECG was normal, etc. I told him that Jenna's been having palpitations four-five times a day for the past 4-5 days (I'm losing track). He told me that he has never in his six years as a Doctor seen a 14 year old have VT. That was reassuring to hear, but I asked if he's seen a 14 year old have frequent SVT, or whatever it is, that lasts sometimes 10 minutes or more and once for three hours, happening so often. I told him that I was willing to sit in the ER all day so we could be there if she were to have symptoms again. He told me that she's scheduled for a holter on Monday..I told him thats 4 days away. We spoke back and forth for 20 minutes. I guess I finally wore him down and he finally understood where I was coming from...my concerns as a parent and how stressful and frustrating this whole situation is for me. He said he would see what he could do, what "strings he could pull" and left the room for about 15 minutes. When he returned, he was smiling and told me he was able to get Jenna a holter...we would just have to wait 30 minutes!!!!! I was so grateful!! dancee She's got the holter until Thursday morning.

Jenna went back to school and is at her Grandparents right now, for dinner.

Jenna just texted me 5 minutes ago saying she felt light headed and her heart pounding. She said it wasn't going as fast as usual, but still faster than normal. I'm so happy!!! At least we've captured something!!!!! Finally!!!!! I'll finally be able to know what's going on!
~ Suzanne ~

St Jude ICD and Lead Implanted Feb.20/09
8 Shock Storm March 21/09
Lead Dislodged, so Replaced with Medtronic Lead June 16/09
ICD and Lead Explanted Nov.23/09
Medtronic Reveal XT (Cardiac Monitor) Implanted Jan.25/10...explanted and new one reinserted on July 21/11

Cardiac Monitor explanted Sept.9/14

vikki
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Location: Perth, Western Australia

Re: Youngest Daughter feeling heart palpitations

Post by vikki » October 25th, 2011, 7:01 pm

Finally! Let's hope they can move forward in treating her now they'll have the proof.

All the best to you and your daughter. You both must be exhausted!
xx Vikki xx

ICD implanted 20th October 2010 - Boston Scientific
Hypertrophic Cardiomyopathy diagnosed 2006
throw in some VT & A-Fib and that's me
Meds: Diltiazem 180mg, spriractin and chlorthalidone 25mg, Amiodarone 100mg, Asprin 100mg, Thyroxine 100mg


Loves of my life - my husband, my two beautiful boys and chocolate!

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Clover
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Re: Youngest Daughter feeling heart palpitations

Post by Clover » October 25th, 2011, 7:48 pm

YAY!!!!!

I can't even imagine what you have been going through. This is my biggest fear. I haven't said anything until now trying not to worry you. I am so glad that she finally got the holter monitor! It should not have taken all that for you to get for her!

Long QT and CPVT are two things that came to my mind when you mentioned all of this. I'm not sure if they ever found the cause for your VT's but given your history AND her symptoms they should not have let you leave the hospital the first time without one on her!!!!!!!!!!!!!!! Kids do get VT. I pray that is not the case with her. At least now you will know! And what ever it is, you will be able to keep her more protected. We can't keep them 100% protected, but knowledge gives us power, and the ability to do what we can.

My kids haven't have any episodes yet. I pray they never do. If they do, I know I am going to be a force to be reckoned with, just like you!

Just as an FYI...palpitations and lightheadness is what started my roller coaster. You can read my intro for more information.

In addition to the holter monitors the do have "event" monitors that can go longer. I wore one for 30 days. (good thing too as mine was caught in week 2). What is nice about those is that there is a company that is monitoring the events so you get instant feedback if something wonky occurs. It sends the strip to the cardiologist and they review it. On my episode the company themselves even called to make sure I was okay. Then told me to go to the ER if it happend again and expect a call from my dr.

With the holter moniter I think they just store the data and then they review the whole thing at the end of the monitoring.
St Jude "Fortify" ICD- 7/27/10
Polymorphic Ventricular Tachycardia
CPVT diagnosis (Class II Variant on the RyR2)
No longer in denial of my condition
VT successfully converted to sinus via ATP on 7/28/2011


"There is a moment when fear and dreams must collide"

My Intro Post: http://www.icdsupportgroup.org/board/vi ... 943#p63943

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brucerob
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Re: Youngest Daughter feeling heart palpitations

Post by brucerob » October 25th, 2011, 9:04 pm

Suzanne, I'm hoping and praying that you get the answer soon and it will be an "easy fix".

Good Luck Suzanne and Jenna.
Bruce

1st: Implanted 5/30/08, re-implanted 6/30/08, removed 5/2/14
2nd: implanted 5/2/14, removed 11/29/16
3rd: Implanted on right side 12/2/16

Received therapy on 7 occasions, all appropriate

KarenHall

Re: Youngest Daughter feeling heart palpitations

Post by KarenHall » October 26th, 2011, 12:53 am

I'm so glad that Jenna is now being monitored. What a relief for you both. Let us know how it all goes.

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dadmanbob
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Re: Youngest Daughter feeling heart palpitations

Post by dadmanbob » October 26th, 2011, 7:43 am

Hi Suzanne,
I hope you and Jenna now have the time to calm down and relax awhile. I am very sorry you both have gone through this. I really would not want Jenna to turn into another story about people having heart problems. Also sorry for the late reply but just got back online my self.

Bob
BOB
ischemic cardiomyopathy NSVT, stent 1 left side 4/5 &1 right side on 6/9 2011
MI Heart attack unknown when it happened 20% dead muscle
CHF-3, PVD, CAD, CKD-3 & EF 35 now 55 12-19-11
ICD ST JUDE 6/29/11, CD2215-36Q, RVA LEAD, RA-LEAD
Med's
AMLODIPINE 7.5MG AM 5MG PM,ISOSORBIDE MONO. ER 120MG, PLAVIX 75MG
ASPIRIN 81MG,HYDRALAZINE 50MG X4,CARVEDILOL 50MG AM/PM, LIPITOR 80MG
Spironolactone 25mg am/pm,FUROSEMIDE 40MG, Calcitriol .25mg mon,wed,fri
ZANTAC 150MG

I welcome my ICD he is Electron a transformer

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Suzanne
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Re: Youngest Daughter feeling heart palpitations

Post by Suzanne » October 26th, 2011, 6:51 pm

vikki wrote: You both must be exhausted!
Jenna's not even slightly exhausted; she's not even tired. It must be because she's 14, and she just moves on right away, as soon as her palpitations stop. It's me that's stressed about it all. I'm happy she's not, and i tell her not to worry about anything, that we'll get it resolved. I guess I'm taking it all so hard because maybe I see myself, it all reminds me of what I went through, and I hate the frustrations of it all...trying to capture the events. I keep telling myself that maybe it's some kind of hormonal issue, that it''s just temporary SVT, or something that will resolve itself, or be resolved easily. It's hard not knowing.

Jenna's has had no events today (so far). That's a little frustrating, because for the past 4 -5 days, she's had events several times a day. We return the holter tomorrow morning. At least we captured "something" last night.
Clover wrote:YAY!!!!!

I can't even imagine what you have been going through. This is my biggest fear. I haven't said anything until now trying not to worry you. I am so glad that she finally got the holter monitor! It should not have taken all that for you to get for her!

Long QT and CPVT are two things that came to my mind when you mentioned all of this. I'm not sure if they ever found the cause for your VT's but given your history AND her symptoms they should not have let you leave the hospital the first time without one on her!!!!!!!!!!!!!!! Kids do get VT. I pray that is not the case with her. At least now you will know! And what ever it is, you will be able to keep her more protected. We can't keep them 100% protected, but knowledge gives us power, and the ability to do what we can.

My kids haven't have any episodes yet. I pray they never do. If they do, I know I am going to be a force to be reckoned with, just like you!

Just as an FYI...palpitations and lightheadness is what started my roller coaster. You can read my intro for more information.

In addition to the holter monitors the do have "event" monitors that can go longer. I wore one for 30 days. (good thing too as mine was caught in week 2). What is nice about those is that there is a company that is monitoring the events so you get instant feedback if something wonky occurs. It sends the strip to the cardiologist and they review it. On my episode the company themselves even called to make sure I was okay. Then told me to go to the ER if it happend again and expect a call from my dr.

With the holter moniter I think they just store the data and then they review the whole thing at the end of the monitoring.
I agree Clover!! That's been the most frustrating thing!! We should have gotten a monitor straight away!!!! I will most certainly have words with my EP the next time I speak to him!! I'm very disappointed that he didn't help us right away!!

The hospital that I have been bringing Jenna to lately doesn't have loop/event recorders. They only have holters. I'm familiar with loop/event recorders....that's what captured my sustained VT (an external one) and that's what I have implanted. My EP has scheduled Jenna to get a loop (from his hospital) on Nov. 15th, which is totally ridiculous to me. He's not too concerned, with the information he knows, because Jenna has never fainted. I feel he should have acted quicker just to ease my mind, considering what I've been through. He might know or believe that it's nothing serious to worry about, but I don't! I haven't been able to speak to him for the past week, because he's away until next week. Last week, a nurse did communicate with him via email, and then he called her. He should have called me. It would have meant a great deal to me.

And thanks Bruce...I hope it will be an easy fix too.
Karen and Bob, thank you.

I will let you all know as soon as I find anything out.
~ Suzanne ~

St Jude ICD and Lead Implanted Feb.20/09
8 Shock Storm March 21/09
Lead Dislodged, so Replaced with Medtronic Lead June 16/09
ICD and Lead Explanted Nov.23/09
Medtronic Reveal XT (Cardiac Monitor) Implanted Jan.25/10...explanted and new one reinserted on July 21/11

Cardiac Monitor explanted Sept.9/14

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Eric
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Re: Youngest Daughter feeling heart palpitations

Post by Eric » October 26th, 2011, 7:23 pm

Suzanne,

I am glad they got something, hopefully it will tell the docs what they need to know.
Thoughts and Prayers are with you.

Eric
Eric [bot]

Idiopathic CHF/ EF currently @ 53%, Low point 26%
St Jude ICD implanted 6/2008 Device changed 6/2009
1 Shock (innappropriate), ICD reprogramed 6/2010
Lead revision 3/2011 due to fractured lead
53 shock storm 4/21/2011 (Inappropriate)
ICD turned off May 20111 through 8/16/2011
Lead revision 8/16/2011
VT episodes starting in August 2012
ICD Changeout 2/25/2013 St. Jude Inspire Assura
Too many meds to count
Life is too short, live in the moment and make the best of it :)
Intro is here:http://www.icdsupportgroup.org/board/vi ... 271#p75271

Mary Kay
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Re: Youngest Daughter feeling heart palpitations

Post by Mary Kay » October 28th, 2011, 8:48 pm

Suzanne,
I haven't been to the site for awhile, catching up tonight. I just read all 5 pages of your experience with Jenna. I am so upset for you I don't know what to say. You are a great mama bear, keep after them. Have you found a pediatric cardiologist yet. That would be one of my main priorities. Never listen to any doctor who says, "I've never seen this before." I will pray that this gets resolved soon.
CHF, Cardiomyopathy and LBBB
EF 20%
St. Jude Bi Vent ICD CRT implanted September 9, 2011
7 shock storm inappropriate due to dislodged lead
damaged lead removed and replaced Sept 26, 2011
EF improved to 50% in December 2012
Carvedilol 12.5 mg 2x
Ramipril 5 mg 2x

Char
Posts: 111
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Re: Youngest Daughter feeling heart palpitations

Post by Char » October 28th, 2011, 11:31 pm

Hi Suzanne,
I too have just been catching up on whats been going on lately.. I wish you and your daughter all the best.
Our Toronto Drs are amazing, once we get them moving LOL... What Hospital have you been taking her to?
She is so lucky to have such a wonderful mom thats being so aggressive.. Big hugs to you both
Charlene

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