Pacemaker insight!!

ashleylovie
By ashleylovie Latest Reply 2011-10-20 13:00:52 -0500
Started 2011-10-05 23:06:14 -0500

Hi all!,

For those that don't know, I have congenital complete heart block. I've been on my 2nd event monitor for a little over 3 weeks now. This past Monday I was informed that my heart rate fell to 32bpm. My EP/cardiologist and I have known that a pacemaker was inevitable but we were trying to push off the surgery until I had major symptoms (ie: fainting, etc.). This decision was mainly due to my age and trying to keep from undergoing so many surgeries throughout my lifetime. This past week has been hard, to say the least. I've missed 2 days of work and have slept my way through the rest…on top of my "normal" daily symptoms. Because of my recent low bpm and my previously mentioned increase of symptoms, we decided that the pacemaker surgery can't be put off any longer. I've been all over the internet trying to find personal stories and experiences to no avail. I know the summary of the procedure but I'd like to hear more from the patient's point of view. Is there anyone out there that would mind sparing a moment to tell their story? Hospital stays, experience after surgery, recovery time, restrictions…anything! Pictures would be AMAZING also, as I've had NO LUCK finding any! I have an appointment this Friday to discuss the details of the surgery and to set a date for next week. Thank you all and I hope everyone is having an awesome day!!
xo
Ashley


26 replies

ashleylovie
ashleylovie 2011-10-14 11:51:23 -0500 Report

Hi everyone!

It's been a week and a day since I first wrote this post and MUCH has gone on!!! The first thing I must say is…

I received my pacemaker!!!!

I went in for surgery at 8am on Wednesday. The whole experience was extremely straightforward and I (surprisingly!) wasn't as nervous as I had thought I would be! I checked into the hospital at 7am and was in for surgery around 8am. My nurses were awesome and my anesthesiologist was more than I could EVER ask for! My EP/Cardiologist was a little late arriving because of a prior surgery so I received a little "cocktail" in the operating room to help me relax a little. We listened to music and talked about our lives…I felt so comfortable! When the doctor arrived at the hospital, the anesthesiologist gave me a little stronger "cocktail" and I fell right asleep. I woke up as they brought my family in to see me and I felt GREAT!! No nausea, pain or that after-anesthesia feeling what-so-ever! I was moved to my hospital room about 20 minutes after that. My hospital is located in Newport Beach on a hill overlooking the ocean so needless to say, my room was beautiful! I was lucky enough to receive a room that had 3 windows, each overlooking the ocean. The nurses called it their "presidential suite". haha I had a dining table, fold out couch, huge closet and gigantic bathroom…I couldn't have asked for anything more. I honestly felt like I was in an upscale hotel…with EXCELLENT food to boot! I did stay overnight and was released at about 11:30am on Thursday. I was laughing and walking around immediately after surgery…I feel like a new person. I'm SO happy that I went through with everything. I haven't ONCE felt like I used to. I knew that the way I used to feel wasn't normal, but after feeling how I feel now…I can't believe I lived that way for so long!! I can't really explain the way I feel but I just feel…good…and…right. After being discharged, I even went shopping with my parents haha gotta love Target!! I am a little sore still and my arm is in a sling for about a week, but nothing I can't deal with. I'm not even on anything stronger than a couple Tylenol when I need it! I have my follow up appointment in a couple hours so fingers crossed!! I get to see my incision for the first time…eek! I'll post some pictures later today also :) Thank you guys for your input and if you have ANY questions, please let me know!!

xo
Ashley

HeartHawk
HeartHawk 2011-10-17 21:26:52 -0500 Report

Ashley:

Great news! Watch for posts by Maja1959. She is a little anxious about the fact that she may need a pacemaker soon. Your experience should help allay her fears.

HH

ashleylovie
ashleylovie 2011-10-20 12:57:59 -0500 Report

Done and done!! Thanks for telling me about her!! I want to help everyone I can!! It's a scary thing in the beginning!

arkansasurviver
arkansasurviver 2011-10-12 13:24:05 -0500 Report

I have had chf since 2002 and recently discovered I was in afib. After trying the medications and waiting on body to improve I received my pacemaker in October. I remember the morning of in icu and talking to my doctors. When I woke up I was ready to go, I had a great experience. I knew at that moment I was going to make it. I was back to work, starting slow at 4 hours in a little over a month. I do work a desk job so hopefully you can do the same. I have not had any complications from the placement. The only on going issues are with my clotting issues and heart failure. It was a scary situation at the old age of 27 but the best decision. I feel now almost a year later better than I have in a long time. Let me know how it goes!

ashleylovie
ashleylovie 2011-10-20 13:00:52 -0500 Report

Hey Arkansas!
I felt the same way after surgery!! It was an instant difference…I wanted to run around and test the sucker out! haha I went back to work after about 4 days off. I have a desk job as well, so it worked out pretty well!! Glad to hear you're doing so well!

HeartHawk
HeartHawk 2011-10-07 23:04:31 -0500 Report

ashley,

I went right to the source and asked my "go to guy" cardiologist Dr. William R. Davis about pacemakers when my father-in-law had a similar loss of heart rate (32 BPM by the way). I'll paraphrase slightly but he basically said implantation of a pacemaker is the cardiological equivalent of doing an appendectomy - common, safe, and effective.

Here is a good article on the subject.

http://www.heartconnect.com/news-articles/417-atrioventricular-block-treatment-amp-management

If you have any specific questions just post them and I'll get an answer from Doc Davis. However, actual patient experience for community members woud be fantastic!

HH

ashleylovie
ashleylovie 2011-10-14 11:19:13 -0500 Report

Thanks HH!!

I've been using that analogy constantly to ease everyone's worry! I'm going to post a general response here to fill everyone in on everything that's gone on in the last week!!!

Te Ja
Te Ja 2011-10-06 09:10:39 -0500 Report

I to will be needing a pacemaker at some point in time my dr to is waiting for me to start fainting etc. My thoughts and prayers are with you.

ashleylovie
ashleylovie 2011-10-06 13:01:22 -0500 Report

Isn't that such a weird feeling? To be sitting around and waiting to faint?! I was so tired of it!! I couldn't go anywhere alone and couldn't/wouldn't drive alone for fear of hurting myself and others. I understand that many doctors recommend putting off PM surgery until symptoms progress to cut down on the amount of surgeries you'll have in your life, and I agree to a point. Heck, I agreed for 5 years! But when my HR got down to 32bpm's and I no longer had energy for ANYTHING, I began to think a little more about it. There are hundreds and hundreds of children with pacemakers out there, and they're thriving! Why can't I? For so long I told myself, "Just hold on until after the wedding, just hold on one more year!". But now, the thought of just being NORMAL and living life without thinking of my heart constantly, feeling lazy or being worried about my dizziness outweighs any concern I had. I can't wait to live the healthy, ACTIVE life that I've been envious of for so long…and so what if I have a little scar and bump on my chest? haha am I the only one actually looking forward to surgery?! ha doubt it :) Thank you for your constant input and friendliness! You're awesome! Is there a special reason that your doctor is waiting to implant the pacemaker other than the risk of future surgeries? Have you asked for a second opinion by any chance?
Take care doll!
Ashley

Te Ja
Te Ja 2011-10-06 13:40:04 -0500 Report

The cardioligist I went to for several test stated I should have a pacemaker. Then at my next regular dr appoitment he said he wanted to wait until I started passing out. The only reason I can think of is because when I am very active my heart function normal. It's only when I'm just walking or sitting that my it does not fuction correctly. Which makes it hard when I sit at a desk 8+ hours a day. Now that I have been on this site for awhile I realize I need a second opinion or at least go back to the cardiologist who I have't seen in a while. My biggest fear is if I pass out will I wake up or like you said hurt someone.
I hear you on the waiting, but it sounds like your body is telling you it's time to do something. Take care Te

ashleylovie
ashleylovie 2011-10-06 14:01:49 -0500 Report

I see! What is your official diagnosis? Your symptoms seem a lot like mine used to be. My stress tests always came back positive. I've never had a problem increasing my HR naturally either. My main problem, like yours, was my resting HR. My sleeping HR was the main concern…which was when my low of 32bpm was recorded. Also, like you(:D), I have endless symptoms at work…where, like you!, I have a desk job. I'd been to 3 different cardiologists before deciding on my current one. Whom, luckily, is also an electrophysiologist. I was actually referred to her by my 2nd cardiologist who felt that she would be a better fit for my disease. My 2nd doctor specializes in pacemaker placement as well…so I got pretty lucky there. That's why I strongly recommend a second opinion. You can never have enough connections!…let alone information. My experience with my first doctor was one that I wish I'd never went through. It was horrible, to say the least. I'm sure that your primary doctor would have no problem referring you for a second opinion. Most doctors seem to recommend it. Are your symptoms increasing or progressing? I wish you all the best, take care of yourself!!
xo Ashley

Te Ja
Te Ja 2011-10-06 16:05:20 -0500 Report

That is the weird part or I should lack of me asking I have never been told or been giving a name for what is wrong. Only that the right side of heart is enlarged, and I have a irregular heart beat , I said earlier only fuctions properly when I'm in full activity.
As for my symptons palpations are getting stronger thou lasting about the same amount of time. I had a couple of episodes where my arm and chest got a heavy feeling, dr said I probably was having panic attacks because EKG was fine. Other then that I feel better then I have in a long time. When my symptons first started I couldn't walk to the mail box 100ft away. Now I can walk or bike 2 miles.
I believe thats another reason my regular dr is not pushing for a PM is little change in symptons, thou feeling better. It so weird to be feeling better yet I can get so tired, so fast when trying to do something.

Te Ja
Te Ja 2011-10-14 13:08:03 -0500 Report

Thank you so glad you are now doing great, I was gettig worried you had't post in a while of course I see why now, and congratulation your new healthier life.