If this is your first visit, be sure to check out the FAQ in HCMA Announcements. You may have to register before you can post: click the register link above to proceed. To start viewing messages, select the forum that you want to visit from the selection below. Your Participation in this message board is strictly voluntary. Information and comments on the message board do not necessarily reflect the feelings, opinions, or positions of the Hypertrophic Cardiomyopathy Association. At no time should participants to this board substitute information within for individual medical advice. The Hypertrophic Cardiomyopathy Association shall not be liable for any information provided herein. All participants in this board should conduct themselves in a professional and respectful manner. Failure to do so will result in suspension or termination. The moderators of the message board working with the HCMA will be responsible for notifying participants if they have violated the rules of conduct for the board. Moderators or HCMA staff may edit any post to ensure it conforms with the rules of the board or may delete it. This community is welcoming to all those with HCM we ask that you remember each user comes to the board with information and a point of view that may differ from that which you hold, respect is critical, please post respectfully. Thank you

Announcement

Collapse
No announcement yet.

ICD fired

Collapse

About the Author

Collapse

Wyoguy I am educated as a Civil Engineer. However, I spent most of my life as a farmer. If you eat Kashi organic cereal with wheat in it, you have probably eaten wheat from my farm:) Find out more about Wyoguy
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • ICD fired

    I have read about VT storms somewhere....can't find it just now. I had one about 2 weeks ago. I live around 60 miles from the nearest hosp, so my wife called 911 and we met am ambulance in our small town. They hooked me up with IV's etc. Then I got a ride in flight for the rest of the way. I remember every shock including two on the paddles. My wife said there were many ,ore with those, giving ,me burns front and back.

    I had 109 or 193 shocks according to the interrogation. I was conscious for all. Drugs finally got the heart slowed down. That part i dont remember. i do know the battery was drained. Now I am taking so many drugs that I am seldom hungry. Since the VT is being controlled by drugs, I am thinking I will be a transplant candidate.

    Suggestions would be appreciated. Wyoguy
    Diagnosed 1988
    ICD Feb 2014
    Mayo Dr Ommen 3/2014

  • #2
    You were doing so well, down to every other year check ups at Mayo!.... HCM can be so fickle. I'm Hoping Mayo will give you a plan of action.... I believe there are options before transplant but not expert in the electrophysiology part of HCM.
    Hoping the very best for you
    edit-I just read a post " Hello my name is Evan" from today.... and he has had VT storm and an ablation maybe you can connect.
    Last edited by JillC; 02-19-2017, 12:41 AM.
    After years of symptoms:
    Officially Diagnosed HOCM 2006
    Myectomy 3/11/13 at non-COE
    Extended Myectomy 7/23/14
    At Mayo with Dr. Joseph Dearani

    Comment


    • #3
      Hi, so back in late July I had a VT storm that went up to around 166bpm (my icd was set to 40bpm low and 170bpm high). I did not receive cardioversion but was in emergency and observed by a doctor. It took a little while for another VT Storm to kick in but I did eventually instantly shot up to high 160s I was injected with a medication (can't remember which one) transferred to the CCU and placed on IV amiodarone. When I was discharged I was on a very high dosage of amiodarone (the pharmacist was like "what the heck!") for a gradual reduction, my maintenance dosage was 400mg daily.

      Mid September 2016 I had an electrophysiology study with ablation, I was under a general anesthetic for the surgery so remember nothing, the recovery was the worst part. My EP said the surgery was highly successful and reduced my amiodarone to 200mg and if all goes well and I am stable I will be taken off amiodarone in December.

      I forgot got to mention, late December 2016 I thought I was going into VT but an interrogation revealed no incidents, I chalk it up to stress.

      Comment


      • #4
        Thanks Jill and HAMSQUATCH. DR Ommen suggested that ablation was not a good option for me. That has been a couple years ago, so maybe new technology? I was reading about dual catheter oblation and how much better it is in certain situations. There is also surgery for apical hcm but I won't know until my appt at Mayo on the 7th. And my present problem is electrical.

        Sounds like our experiences were similar. My bpm was 280, and they said I had a pulse. Does not make any sense to me, but none of this does. Amiodarone and I think Mexital are the two that finally slowed my heart down enough that the shocks would work to get the rhythm corrected. I was IV, then 1200 mg and now 400 mg. I am not sure what has been affecting me, but about an hour after taking my morning meds I get a little dizzy and just crash.

        I will look for the Evan information. Thanks again!

        Diagnosed 1988
        ICD Feb 2014
        Mayo Dr Ommen 3/2014

        Comment


        • #5
          My limited understanding is that the ability to use ablation to stop VT depends on the EP cardiologist to map where the "source" the VT is coming from.....if it is a small area that can be identified as the source....then it can be ablated with pretty good results. If the VT is being initiated from multiple areas or large areas of scarring then ablation would most likely not work as well. What would be required is a cardiac cath with an EP study to find the source.
          Even though your problem is electrical at the moment.....if it is the thick or scarred apex or a ventricular aneurysm from the apical HCM that is the source of recurring V tach, then I would think that might make Apical myectomy an option if ablation was not.
          Again, it would depend on finding an anatomical location which is causing the VTach.
          I'm glad you are getting to Mayo soon.....I would imagine besides everything else that your ICD may need a new battery.
          Yes, the meds are quite strong , that's why they try to find an option besides being on Amiodorone for life. ..... I think Evan and Hamsquatch ( above) are the same person.

          Wishing the VERY best for you!
          JillC
          Last edited by JillC; 02-19-2017, 04:24 PM.
          After years of symptoms:
          Officially Diagnosed HOCM 2006
          Myectomy 3/11/13 at non-COE
          Extended Myectomy 7/23/14
          At Mayo with Dr. Joseph Dearani

          Comment


          • #6
            It would be nice to discover that this will entail much less than I fear! At this point, nothing sounds like a very good option......although everything sounds better than a transplant. They replaced my ICD the third day I think. I was really hesitant. I don't ever want to go through that again. The battery was run down. By this time they got it shut off it was only giving a partial shock. One side of the ICD (I told them I wanted to see it) was discolored as it would be metal that was heated. I supposed that was the battery being hot, but the docs and the Biotronics rep both said they had never seen one do that.

            I think the reason they were thinking that the oblation would not work was because of the area of thickened heart. I will find out more i suppose after my visit to Rochester.

            Thanks for the info and the encouragement! Even with my whole family here, no one quite understands what this is about. My one daughter used to be in research, so she has been great help. We are trying to track down any type of stem cell treatment. Not a lot of luck there, although there is some ongoing clinical trials. Maybe someone on here has better info that we can find. Everyone has been checked in my family, and so far, no one is showing positive. I pray it stays that way.
            Diagnosed 1988
            ICD Feb 2014
            Mayo Dr Ommen 3/2014

            Comment


            • #7
              Wyoguy, I'm on amiodarone, bisoprolo, ramipril, and aspirin and still get dizzy and tired, and pretty bad postural hypotension. One thing I noticed helped was make sure you are hydrated. You can't be on amiodarone forever so your doctors should be giving you other options, I'll dig up some paperwork and let you know the exact procedure I received.

              Mid august 2016 I had my pre-EPS appointment to meet with the pharmacist, nursing team, and anesthesiologist.

              Mid september I had my electrophysiology study with ablation.

              best of luck I hope this information helps.
              Last edited by Hamsquatch; 02-19-2017, 06:19 PM.

              Comment


              • #8
                HQ, thanks for the info. Yes, it is reassuring that the dizziness is part of the meds. I appreciate any info.

                Have any of you heard of the dual catheter ablation?
                Diagnosed 1988
                ICD Feb 2014
                Mayo Dr Ommen 3/2014

                Comment


                • #9
                  I am taking....amiodarone, amoxcillin, aspirin, atorvastatin, clopidogrel, diltiazem, doxycycline, metoprolol, mexiletine, xarelto and prazosin. The antibiotics are because I had an IV infuse my forearm with amiodarone. By the time they figured that out, my arm was pretty swollen. And got bigger. After release i went to the wound care facility and they opened it up so it could drain......much better now. I can see the veins in my hand again! The prazosin is for night terrors. I have certainly had some. I also get the postural hypotension, only not too bad if I just slow down. I know I got the amiodarone in the ER, and am guessing the other drug was the mexiletine. It was having no effect until the cardiologist called in and told them to double the dose.
                  Diagnosed 1988
                  ICD Feb 2014
                  Mayo Dr Ommen 3/2014

                  Comment


                  • #10
                    Hi HQ, you have quite a success story! Congrats!

                    Do you know what type of ablation was used with you? Most of them are single catheter, but there is also a double I read about. I have not been on here in a while, so it may have already been discussed. In that event, I will keep looking. Thanks
                    Diagnosed 1988
                    ICD Feb 2014
                    Mayo Dr Ommen 3/2014

                    Comment


                    • #11
                      Not sure which kind I had tbh.

                      Comment


                      • #12

                        I am home from Mayo where I saw Dr Ommen, Boilson, and some names I can't pronounce, but they are electophysiologist. My EF which had been 30-35 is now 60??? I think this has to do with who does the measuring, and as Ommen explained my heart was pretty beat up after the shocks and a month later it is almost normal size for me. So, his conclusion is that nothing with the heart has changed since last year....I am still stable HCM.

                        The electrical guys have said that oblation is a possibility. However, I have to go off of the rhythm drugs for them to be able to cause another VT to find the problem. The location of the origin of the VT is not in the apex, which is where it should come from for my version of HCM. It is up higher. I had an 85% blockage that was corrected with a stent, and that is the area where he thinks it came from and possibly caused the VT. The problem with all of this is that if I have another VT storm, the doctors will use the amirodrone to stop it, and my system needs to be clean. So, kind of a catch 22. The plan is to cut my Amirodrone to 200 mg for three months, and the discontinue for the next 3 months. That will have me in shambles for fear of having it happen again.

                        For now, I am off the transplant list....and hopefully never find it necessary to make that choice!
                        Diagnosed 1988
                        ICD Feb 2014
                        Mayo Dr Ommen 3/2014

                        Comment


                        • #13
                          That seems like a weird timeline, everyone is different I guess. I was on 400mg amiodarone and had it discontinued for 1 week before ablation so they could enduce VT then continued on 400mg and reduced to maintenance dosage of 200mg about two months later.

                          Comment


                          • #14
                            Wyoguy,
                            I was trying to figure out how the EP guys could tell what part of the ventricle the Vtach was from without doing an EP study.....I'm guessing they could tell by looking at EKG strips from your storm episode. If the Vtach was initiated from higher up in the ventricles it would look different on the EKG. If it was higher up, you may have gotten a better ventricular contraction which allowed you to keep a pulse and not lose consciousness....blood going to brain....which is good. Although it was scary, if you are conscious your brain and organs are getting a blood supply. People can actually walk around with V tach at least for a while, depending on the rate .... definitely not at 280 bpm. The biggest danger is that the Vtach will deteriorate into V-fib which is just an erratic quivering of the heart that cannot supply blood to the brain and other organs.
                            So you are tough, you're heart is tough and surviving being in the middle of Wyoming with intractable V-tach....I think you are meant to stick around for a while. If it were me, I would just ask the EP guys through the Mayo App messaging....what is the absolute shortest time between now and a trip to Mayo for an ablation? and hold that thought!
                            Love and Light,
                            Jill C.
                            After years of symptoms:
                            Officially Diagnosed HOCM 2006
                            Myectomy 3/11/13 at non-COE
                            Extended Myectomy 7/23/14
                            At Mayo with Dr. Joseph Dearani

                            Comment


                            • #15
                              HQ, that is very good news to hear. Where did you have yours done? Maybe I can reference this to the EP guy.

                              Jill, he did look at the EKG that was taken when I was in the ER. No idea how they were able to decipher this, but that is what he said. I talked to the EP about how I could stay conscious at 280 bpm. He said it was 180, not 280. Yes, it makes sense that I was getting O2 to have stayed conscious. My family was at the ER when all the commotion was taking place. My brother said that my feet and legs were grey. I do have some memory issues which they think will resolve themselves in time. Also had coordination problems. It is better, but still not normal. I agree that there must be something that I need to do......Now if the good Lord will just make it obvious to me Thanks for the responses!

                              Dennis
                              Diagnosed 1988
                              ICD Feb 2014
                              Mayo Dr Ommen 3/2014

                              Comment

                              Today's Birthdays

                              Collapse

                              Working...
                              X