After my second replacement in 2010, the pain got worse and much more frequent. In 2012, I had asked my cardiologist at the time and was told the same thing as my primary care doctor had said that it was nerve pain and post side effects from surgery. By the end of 2012 and the beginning of 2013, I started needing to put ice on the incision and sometimes had to take Tylenol for it. In 2014, when I began seeing my current ep, I asked if something could be done about the pain, I was giving some patches but that only helped when it was on and pain will return when I took it off. I complained about the pain when I was at my next visit, I was given nerve pain medicine. The nerve pain medicine did help with the pain but it made me sleepy so I could only take it at night time and during the day the pain would still bother me. At times, the pain was so bad it felt like my head was going to explode. My ep then suggested I try acupuncture. I tried acupuncture and it worked at first that I was pain free and  the acupuncture doctor said it was inflammation and it would take a while for the pain to go away and I continue going to acupuncture for about 5 months but then the pain return to its original state after getting acupuncture for about 5 months, so I stopped going because my pain was not getting any better.

I then went to a pain management doctor to see if anything else could be done for the pain, I was told by this doctor that it was nerve pain and when nerves grow back it grows back abnormally and there is no way for it to return to its original state before it was cut for surgery, and there is only temporary relief from the pain. I complain about the pain again at my next visit with my ep. At this time, I found out I had a small problem with one of my leads in which it had higher threshold pacing causing it to use more energy to detect my heart. My ep then said a pocket revision and moving my ICD to new spot may help with my pain because it may be that the leads have a lot of scar tissue surrounding it since it had been inside me for 16.5 years or that my ICD has been in the same pocket and same spot for so long there may be a lot of scar tissue build up causing my pain. I was given the choice whether to have the leads extracted and ICD replaced and moved to new spot sooner or wait until replacement time.

Since my pain was pretty severe at this point and I was having pain almost everyday and it started to interrupt my sleep, I choose to have it done sooner. So in June 2016, I had lead extraction and my pocket revision for my ICD to new spot and replaced. My first 3 ICD was under my muscle, now my 4th ICD is submammary (underneath my breast tissue and on top of my muscle). I still get occasionally pain now and get pain before and during my menstrual cycle but the pain is nothing like it was before and I don’t need anything for it now, it is annoying and uncomfortable but nothing like it was before that caused me to complain so much.

• DFT- Defibrillation threshold testing
• VT- Ventricular tachycardia
• VF- Ventricular fibrillation
• AF- Atrial fibrillation
• EKG/ECG- Electrocardiogram
• PVC- Premature Ventricular Contraction
• PAC- Premature Atrial Contraction
• ICD- Implantable Cardioverter Defibrillator
• CRT- Cardiac resynchronization therapy
• LVAD- Left ventricular assist device
• EP- Electrophysiology
• CPR– cardiopulmonary resuscitation
• DCM- dilated cardiomyopathy
• HCM- hypertrophic cardiomyopathy
• LBBB- left bundle branch block
• MI- myocardial infarction
• QTc- corrected QT interval
• RBBB- Right bundle branch block
• SVT- supraventricular tachycardia
• PLSVC- Persistent Left superior vena cava
• WPW- Wolff–Parkinson–White syndrome
• LQTS- Long QT syndrome
• CPVT- Catecholaminergic polymorphic ventricular tachycardia
• BrS- Brugada Sydome
• SQTS- Short QT sydrome
• ARVD/C-Arrhythmogenic right ventricular dysplasia/cardiomyopathy
• VUS- Variant of unknown significance
• CHF- Cardiac Heart Failure
• LCSD- Left Cardiac Sympathetic Denervation
• SCA- Sudden Cardiac Arrest
• SCD- Sudden Cardiac Death
• SICD- Subcutaneous Internal Cardiac Defibrillator
• ATP- Antitachycardia Pacing
• BB- Beta Blocker
• CHD- Congenital Heart Disease
• EF- Ejection Fraction
• IST- Inappropriate sinus tachycardia
• NSVT- non sustained Ventricular Tachycardia
• PAF- Paroxysmal Atrial Fibrillation
• POTS- Postural Orthostatic Tachycardia Syndrome
• PSVT- Paroxysmal supraventricular tachycardia
• ST- Sinus Tachycardia
• SVT- Sustained Ventricular Tachycardia
• BPM- beats per minute
• ASD-  atrial septal defect
• AV- aortic valve
• EPS- electrophysiological study
• HOCM- hypertrophic obstructive cardiomyopathy
• HR- heart rate
• SIDS- sudden infant death syndrome
• TdP- torsade de pointes
• VSD: Ventricular septal defect
• AED – Automated External Defibrillator
• BP-Blood pressure
• DVT- Deep vein thrombosis
• SSS- sick sinus syndrome
• EMI- Electromagnetic interference

Although I knew the risks associated with lead extraction and knew I had the very best in my care, I still wanted to speak to someone who has had lead extraction before to hear from a patient stand point. I went to the international SADS conference in 2015, although we did not officially meet at the conference, I knew Greg had lead extraction before since he spoke about it, and we happen to have the same doctor performing the lead extraction. I spoke to him and asked him a few questions about the lead extraction and after hearing from a patient stand point I felt better about my decision to have it done sooner.

In June 2016, I had the lead extraction and pocket revision for my ICD. I had general anesthesia. My new ICD was placed submammary (under my left breast tissue and on top of my muscle). My new lead was tunneled from right side to the left side new spot because I have a persistent left superior vena cava and this anatomy can be challenging to place new lead on left side. My leads were inside me for 16.5 years. The surgery took about 3 hours. My groin was used as the excess point for the lead extraction, so after the surgery I had to lay flat on my back for 4 hours. I stayed at the hospital for one night and was discharged the next day. I had post op appointment two weeks later and my ep said I was healing well. I recovered well after surgery.

1. Why am I consider at this risk level at the current time?
2. Will my risk level change overtime? Or will the risk level remain the same all the time?
3. What are the treatment options?
4. Why am I being started on this particular dosage of beta blocker?
5. Why is this beta blocker the best one for me compare to the other ones?
6. If I have a question after my appointment, what is the best way to contact you?
7. Will I need to have genetic testing? How long does it take to get back results for genetic testing?
8. What will be done for my kids and other family members?
9. Is there any specific medications I should avoid with this diagonals?
10. Are there any specific foods or drinks I should avoid with this diagnosis?
11. How often will I need to see you and why?
12. What kinds of tests will be done to determine my diagnosis?
13. After I get a diagnosis, what kinds of tests will continue to be done to ensure I am protected by current dosage of medication and how often will it need to be done?
14. What does the genetic test results mean?
15. Does hormones play a role in the risk factor?
16. When going through puberty, will I have an increase risk of events?
17. When going through menopause, will I have an increase risk of events?
18. Can I continue to participate in sports?
19. Are the medications safe in pregnancy?
20. Do I need any precautions if I am thinking of pregnancy?
21. How will I coordinate care if I am thinking of pregnancy?
22. Can I still take the medications if I want to breast feed?
23. How would the medications I am taking affect the baby during pregnancy?
24. Is there a correlation that during your menstrual cycle you may have more arrhythmia?
25. Based on the condition I have, will I be at a higher risk of events during postpartum?
26. Is it ok to take vitamins and other supplements with the current medications I am taking?
27. Do I have to keep my heart rate below a certain rate while exercising?
28. Are there any activities I should avoid with this diagnosis?
29. What restrictions will I have with this diagnosis and why?
30. Are there precautions to take if I may need other surgeries?
31. What side effects is possible from the medications I am taking?
32. Will I have full access to my data so I can meaningful engage in my own health care?
33. Do you engage a resident therapist/psychiatrist who can help me with coping issues, should they arise?
34. Are there any support groups I could join either in person or online to talk to others?

2 years later, when I was 13, during gym class I had passed out again and this time I had woke up very fast from it. This time I had tests done for my heart since I told the doctors I had already had tests for my brain and nothing was found. After a few EKGs, a hotler monitor, echo, and stress test, I was then diagnosis with Long QT syndrome. It was a very scary feeling since I did not know what the results were on the stress test and many doctors were surrounding me. I was told I needed an ICD right away since I was consider high risk and needed to be put on medications. I was hospitalized while awaiting for my surgery. While many parents are the ones who have to explain to the child what is going on, I had it the other way around where I was the one explaining to my parents since they only spoke some English.

After my ICD was put in, I went back to school and normal activities. A few months after my ICD implant, I experience the first shock from my ICD while walking in the hallway in school, I went to the doctor and I don’t remember but I think a adjustment was made to the ICD settings. When I was 14, I had experience more shocks, where on two separate occasions I had two shocks each time, my medications dosage was increase and both times was when walking in a hallway of school. When I was 15, I was shocked again, this time it was 7 times in a row, it happen while waking to the bus stop. At this time time I felt alone as no one stopped to help me and bother to even ask if I was ok.  I was placed on two other medications and settings to my ICD was changed. I also had ablation surgery when I was 15. I graduated high school with my class even through I had missed so much school.

I had routine check ups through out the years. I had genetic testing done 4 times and all 4 times no mutation was found for Long qt. I had ICD replacement in 2004 and 2010. I went to college and obtained my bachelor’s degree. Then when I was 28, I had recurrent VT recorded on my ICD and did not know about it until I went for my routine check up. At follow up about 3 weeks later, I had 4 more episodes of recurrent VT recorded on my ICD. I had ep study and then was diagnosis with CPVT. I had genetic testing done for the 5th time and this time a mutation was found for CPVT. I am currently taking nadolol and flecainide and have my ICD as my treatment plan. In 2015, I found out I had a small problem with one of my leads which it had higher threshold pacing causing it to use more energy to detect my heart. Due to my severe pain I was having in my incision, I chose to have the lead extraction and replacement of my ICD sooner, so in June 2016 I had lead extraction and my ICD replaced in which it was move to a new spot with a pocket vision.

I live a normal life. I am currently working full time and am in the middle of obtaining my master’s degree.