Implanted 5 days ago - words of wisdom please

Yes it gets better!

by Tracey_E - 2018-10-29 22:02:16

Glad you found us! Once you heal, your life will be exactly like it was before with a few extra check ups and possibly a box in the bedroom to send reports. I used to hate my box but it means fewer check ups so I've made peace with it. 

YOU CAN ALWAYS MAKE LIFE WHAT YOU WANT. Seriously. Repeat to yourself as needed. Write it down and put it on the bathroom mirror and your fridge until you can own it again. 

48 hours is a little overly ambitious. It was more like a week for me until I was back to my regular schedule but still napping a lot and moving slowly, closer to a month until I was doing everything I did before and feeling like my old self, 2-3 months before I was back to my old routine at the gym and not feeling any residual soreness. 

About the only thing we can't do is get near really strong magnets. In reality, most of us don't get anywhere close to magnets strong enough to cause problems anyway. I've had a device since 1994 (I'm a year older than you, btw) and can honestly say it's never once kept me from doing what I want to do. I travel, I ride roller coasters, I work out, I hike or ski every vacation, I love to kayak and zipline. No one looks at me and sees a heart patient. It's kind of fun telling them and seeing the shocked look. 

It can take 6 months to a year for the box to fully settle in, for the incision to flatten and fade. Until then, try not to judge it, know that it's not as good as it's going to get. Keep it out of the sun for the first year and moisturize regularly once it's healed up. I did that religiously on the first 4 and you can barely see the scars. I slacked off on the last one, skipped sunscreen a few times and got sunburned once, and it's still all red two years later. My own fault. 

I would go to Italy, absolutely. The change of scenery and activity will be good for you. Think of it like rebooting the computer. One thing that helped me adjust more than anything was being active again. The more I was able to do, the better I felt mentally, the less I thought about the pacer and my screwy heart. Eventually one day I realized I rarely gave it a thought anymore and I trusted it to do its job and keep me safe. I know it's hard to imagine, but you will get there. 

If you ever want to chat, feel free to message me. 

Thank you too

by CB805 - 2018-10-30 12:07:51

Thank you Swan girl for the reply :) I am so happy to have found this forum. You all understand and that is such a blessing and so comforting. As I told Tracey, I am “allowing” myself to “grieve”. I learned that after the fire. I have a great therapist that taught me how to allow myself to do that. Like you I also had the awesome high income career pre- fire, then the heart issues began the next month. It was too much. I resigned. It was hard. My job, my “stuff” my self as I knew me defined me. It was all gone. Your post in an inspiration. I will get back to the new me again. I work everyday on getting to “me”. It’s good to hear you live a full life and are healthy and can do all the things you love. I needed to hear that ! I was thinking before joining this forum crying all alone in my bed - now what ? Thank you for the hope. I got this !  Everything that has happened this year has tested every fiber of my being. Faith, health, marriage, mind and so on. I just am being kind to myself now like never before putting my self just a little bit first before everyone else. That was something new to learn too :)  I truly believe people are placed in our lives for a reason when we need them the most. I have a couple great friends that are always there for me, family, except my husband, not so much. They only know the old Christy. It seems everyone only remembers  the “old” Christy pre fire pre sick. I’m still that person just a little different. I even think maybe improved from my own inner perspective. Thank you again for everything. 

One day at a time

by Theknotguy - 2018-10-30 16:52:41

If the doc says you're OK with going to Italy, then it looks like you're OK for Italy.  Just take it easy and don't try to run through your visit.  

Based upon your comments you're probably feeling like I was after waking up in the hospital.  My mind was going at about 200 miles a minute and I couldn't focus on one idea at a time without another popping into my head.  What I had to do was force myself to focus on today and today only and concentrate on getting through just today.  If you feel yourself going off on a tangent, remember to just focus on today and not worry about the rest.  Most of the time you can't do anything about it anyway.  

Do things get better - yes they do.  The pain goes away.  You can make life what you want.  How it changes your life depends upon you.  You can do just about anything you want.  And the new normal will be similar to the old normal.  

I like to say we live in a mickey-d world.  You walk into the store, order what you want, wait a couple of minutes and walk out with what you ordered.  Unfortunately your body doesn't work that way.  48 hours is way too short of a time to expect results.  It's going to take time for things to heal and how long that takes depends upon  your body.  So it doesn't do any good to make a mark on the calendar and expect things to be fixed just because you marked your calendar.  

Hope everything goes well and you can tell us about Italy.  
 

Hello from a fellow VC native!

by Kassandra - 2018-11-02 11:03:04

Hi CB. I am fairly new to all this myself, 45 year old active mom and lawyer/ professor. I actually grew up and lived in Ventura County (Oxnard, Oak View) and am so sorry for your loss in the fire. I have many friends that were affected and one that lost his home (Steve Hintz - I clerked for him while in law school and he officiated my wedding).

As for my PM story: I fainted a couple of times (once at Chuck E. Cheese!), finally went to the doctor, had an abnormal EKG, wore a monitor for less than 48 hours, got a call that my heart was stopping a few times a day, and the next day got a pacemaker. It was all very sudden and shocking although I now realize I had been having problems for years that I attributed to other things.

At first I thought, this is no big deal - a routine procedure. I didn't even cry or get upset. I had never suffered from depression or anxiety before in my life. No medical history, always healthy and a runner/hiker - a year before I was backbacking in the Andes at 17,000+ feet! It was inconceivable to me that this was happening but I just took it in stride.

After the PM I was anxious all the time, especially at night. I was afraid it wouldn't work or something would go wrong. I felt like I could feel it shocking me. I needed some adjustments so I had the upper limit turned off and the lower limit set to 50 rather than 60 due to my normal slow resting heart rate (I am not paced all the time - just for a jump start when my heart stops). I quickly learned you have to be your own advocate for these things so if it doesn't feel right - go get a check and have them fine tune it.

I was doing okay for week after - still in shock but then my incision came open in the middle of the night and I ended up back in the hospital two times. I had an allergic reaction to antibiotics while home alone with my 10 year old and was rushed to the hospital. Then I had infection concerns and internal bleeding because my blood wasn't clotting. While in the hospital I contracted c. difficile (uncontrollable diarrhea caused by being in the hospital and on too many antibiotics). Needless to say, it was more involved and, literally, crappy, than I ever imagined it could be. I spent more time in the hopital post-implant than for the implant. All this added to my shock and I questioned the competence of my doctor and my need for this device. He kept saying I was very unlucky and this never happened. Maybe I was.

After release, I would wake up so mad about the PM that I became concerned as I had never really been angry before. I was so mad it was a physical reaction and it was unfamiliar to me. I wanted the pacemaker out in an irrational manner. I finally went to a therapist and that really helped. She explained all the transitions I was going through, both physically and emotionally. In only too two sessions and she happily released me. Turns out, I just needed someone I didn't know to explain to me what I was going through.

Since then I have improved greatly - physically and mentally. I went on a family vacation to Iceland two weeks after release from my last stint in the hospital and hiked volcanoes and glaciers with no problem. I just couldn't wear a backpack or carry luggage (which was great - husband and kid did everything!) I was scared to push myself at first but after a hill or two I realized I would be fine.  A month after my release I hiked seven miles including summiting a 12,000 foot peak. I felt sluggish but that was from being out of shape. I went salmon fishing in British Columbia two months after and, although a bit painful, I had no issues. I even got a free massage from a lovely lady at the airport every time we travelled!

I guess my point is, it sucked and it's okay for it to suck. It will get better. Get help for your mind and emotions. In my experience the body heals more quickly than the mind. Even if you think you don't need it, at the very least you will have a person to vent to about all the transitions you are going through.

I am almost 5 months out from discharge and back to exercising and living life. I push myself more each day. It still hurts, but that is because I have a lot of scar tissue and nerve damage from the cauterizing and repairs done in subsequent surgeries. My scar looks like a 5 year old did it because they reopened it twice. My posture has been affected so I went to physical therapy and learned some exercises to correct that.

I haven't fainted in 5 months. The thing is doing its job. We make lots of new jokes about me and the PM around the house. We named the PM Skippy. 

Go to Italy, have your family carry your bags. Drink some wine, eat some great food, enjoy it!

Feel free to PM me if you ever need to vent. Best wishes to you and your family. My heart is always in Ventura County!

- Kass

With you in anxiety

by Samianhill - 2018-11-13 23:34:38

Hi. I had ventricular tachycardia on 9/30. Had never experienced anything wrong with my heart prior to that day. At least not that I knew of. Had an ICD/pacemaker implanted on 10/3. Had lots of problems and lead revision surgery on 11/1.

Going from no heart problems to the event followed by two surgeries in a month has been overwhelming. Especially as I feel they don’t give you enough information. 

I don’t hardly ever remember being aware of my heartbeat before and now I’m hyper-aware. Sitting here typing this now, I feel a fluttery feeling in the center of my chest. I’ve never been so anxious. I’m so happy this forum exists. For example, no one has told me that it will take 6 months to a year for the box to settle. That was great to read  just for the info. 

I’m so sorry to hear about the fire. The last thing any of us need is more things to stress us out. I’m having marital issues and my son is having some problems. It’s all just too much worry. I hope we both start to feel back to normal very soon. ❤️

I can relate

by CB805 - 2018-11-14 17:52:00

You have been through a lot I feel you. I’m sorry. This is a great platform for advice. Tracey whomalso commented on my thread is so helpful and an Angel with her positive great insight and advice.  My experience with feeling heart beats. I know everyone gets a PM or ICD for different reasons. I had a AFIB which were flutters no different than the ones I felt that were VTAC. I had an ablation for AFIB that was successful. The the fire happened. I know that stress, anxiety and worry can make my heart flutter. After the fire almost 9 months after the surgery I was back in AFIB I had a cardio conversion ( shocked with the paddles under anesthesia) I converted to normal rhythm and have not had that sense. I have HCM so over time and from what my cardiologist and EP doctor said the stress and adrenaline surges caused my heart to have to work harder and because of my genetic HCM which I never had issues with before I needed to get an alcohol ablation to decrease the gradient which was successful. I was feeling great and so happy and thankful the worst was over. Then I passed out. I know I would get VTAC but never passed out before and never knew it being any different than AFIB. I only knew I wound get a few non sustained beats due to being on a monitor while being in the hospital. They always said he wasn’t to be concerned about. Well the passing out made it a concern. So I got the ICD PM. I have a follow up appointment this Friday with the EP. I also didn’t know it takes 6 months plus to seat. Nor did I known what to expect after the surgery. Mine seems bulging to me and they say it will nestle in over time. Also that ICDs are larger (?) than a PM. For me, sometimes, and it’s hard to pin point but this what can sometimes cause my heart to flutter. And again, not always are these triggers but sometimes. Anxiety, stress, lack of sleep, alcohol, coffee, too large of a meal. I don’t know if my PM ICD is set to pace. I know the ICD is set to give a treatment at 252 and if the treatment isn’t successful it shocks. My mom who I inherited the HCM from has had a ICD PM and hers paces and she has never been shocked in 8 years and she is 72 with severe palpitations. I know they can integrate the device to see what is going on. I am requesting that for my appointment Friday as I also have had one bout of dizziness and some palpitations. I have found that meditating helps. For me it’s a day by day getting better situation. It takes time I believe to get use to it . I did a week after take a vacation for the weekend then went to Italy with my husband for five days. I was pleasantly surprised I was able to do that ! My advice call your doctor and tell them that you feel the flutters . I’ve read maybe settings need to be adjusted. Hope any of this helps. Again this is a great site for really good advice and other peoples experiences too .