Joined the team 3/29/12-My experiences leading up

I did a great amount of reading here before my pacemaker was inserted on 3/29.

Here is my chance to give back to someone who might be wondering what my experience was like and for someone pondering if this is the right approach to take to help your quality of life.

I am an active 46 year old man- or was fairly active, getting slowed down the past few years by the normal fatigue that I thought was "old age" (ridiculous to think that I thought an early 40's male is old age even-but I knew I was slowing down).

I had bradycardia since at least 2002, and even went for a full workup of tests in 2007, in which my heart rate was into the thirties during nights and in the upper 40's during the day.

As a younger man, my heart rate was always in the 60's, never had trouble exercising, etc. Something- still unknown, messed with my hearts electrical system.

I was a decent athlete still into my mid thirties and forties, but my level of fitness wasnt such that my heart rate should be that low. Being only 41 years old in 2007, the doc then said, "your too young for a pacemaker, just drink more coffee".

Maybe not the best advice, but not knowing all that much, just figured that well, I had to live with the low heart rate- heck, I was still able to play sports, jog a couple times a week, and stay active-

The lightheadedness I just attributed to "stress" and luckily I had never passed out from it, but looking back, it was more than stress causing my symptoms, my body was fatigued.

I combated these feelings of fatigue with a more frezied life pace, almost like I was trying to compensate for my low heart rate by being constantly active with something. Once I stopped doing and doing, the fatigue would set in. To offset the fatigue, I would start "doing" again- which was a spiral of activty that was just getting me no where.

My ability to even think clearly was getting dimished. The brain fog I started to have the last year or so was really alarming to a person who makes a living in IT- I could do my job, but only at a base level.

My work was suffering, my life certainly was not optimal, and I decided to do a medical investigation as to why I felt so lousy all the time.

With the help of a very determined girlfriend- who knew that underneath the fatigue there was a person worth helping, I began that search in January 2012 again.

I repeated many of the tests I had in 2007. The tests showed exactly the same thing as 5 years ago, 32 bpm at night (three different holter monitors that I did) and an average heart rate of about 47 during the day.

I ruled out sleep apnea after getting those tests and even paid 400 dollars to get a lyme disease test from a lyme literate doctor.

When those tests came back in the negative, and nothing conclusive could be found as to what caused this condition, I decided that I did not want to sputter though another year, which I am sure I could have done.

The cost would be another year of not knowing why I felt like I did- and knowing that I have the very slow rate, doing nothing was like having a possible fix to the problem and me denying that there was something to fix.

I choose the path that was probably harder to take, to try and fix the problem, and see if this would get back the more healthy version of myself.

On 3/14, I scheduled the surgery for 3/29 (of course, being the frenzied me- I had a Springsteen concert to go to the night of 3/28- that I just had to go to).

Those two weeks waiting, I swear, all the symptoms I had over the past ten years magnified, as if they wanted to haunt me one last time, or try to scare me to change my mind, or do any one of several things to scare me out of my wits, to try to make me change my mind and keep the status quo.

Realize that may happen, dont fall for it, a better future is worth that temporary agony pre surgery.

The surgery is suprisingly simple- most of the anguish that I felt up to that point was understandable, but as I see now, I have had more pain after getting injured on the softball field than I do currently.

I was even awake during it, though the nurses probably wished I was put asleep(being I was a chatterbox I am sure), as we talked non stop about music and things- I have had worse visits being at the dentist that is how simple this procedure felt.

I was doing plenty of things the next day(heck, my day one post surgery was only yesterday), and I was very careful with not lifting my arm too high, dont want the two leads to go anywhere.

I am not a good "rester" - I have to learn how to gear myself down now, as the frantic pace that I felt was keeping my heart beating, pre pacemaker, that is no longer needed.

That hopefully, will be a gift from this.

I can say that at my current initial pace of 60 bpm, a pace which I had when I was a high level athlete back in my late twenties and early thirties, I do all ready feel more energy.

I am a blessed quick healer, so the pain from the insertion spot on my left shoulder is not at all bad, I only used Tylenol for the pain.

I also made a device to keep my arm from lifting over my shoulder at night, as trying to sleep with the sling was just too much. So, some velcro around my wrist, a belt from one of my pair of baseball pants(any belt will do) and a piece of string tied between the two did the trick last night well and kept the arm low and sleeping better.

I will also report that this is not an immediate panacea for your woes- if it was a fix for everything, they would be putting pacemakers in every one!

I still am a bit lightheaded- but I believe that it is my body adjusting- it took ten years to get my body in a state this bad, it will take more than two days to recover.

To those that are "young" and "look to healthy to have a pacemaker", my suggestion is dont let things go as long as I did.

I believe my doctors back in 2007 were a bit thrown that I "looked" the part of an athlete- was not overweight, have some muscle on me, even a tan!

But, I really had a heart rate in appropriate for my body- Looks I believe, even fooled my doctors- and probably since I did well on treadmill tests and never passed out, I got the "Drink some more coffee" prescription- irony is that I have horrible side affects from caffiene.

This post is for the new timers, we are only new around town once, so this is my story and my time to give some hope and comfort to someone reading late at night, on your laptop, worrying about what this will be like-just like I was only a few short weeks ago.

The rest of my story is to be written, and I hope to share more experiences here with others and gain the valuable advice from those who have walked so long in shoes I am just getting into.

May your procedure be successful!


8 Comments

Great story

by ElectricFrank - 2012-04-01 02:04:16

I can understand your experience. You are actually too gentle with your doctors about their decisions and recommendations. They can take their choice as to whether it was incompetence or $$$$. In my case I was in the OR for an implant in 2 days after the symptoms became apparent. That may have been due to my having insurance that would pay well for it. If I had been in an HMO I might still be trying to get mine.

Now for the good part. Welcome as a fellow traveler. I too had mine while wide awake and felt the same way about it. I enjoyed the experience of having the pacer turned on. My HR by this time was down to 26bpm and it felt great to have it jump into the 70's. I also was active quickly after the surgery. I think the lack of anesthesia or sedatives speeds up short term recovery.

I've had mine since 2004 with one replacement in 2010. I'm currently 82 yrs old and very active.

So best wishes,

frank

Appreciate your feedback and welcome here

by jds66 - 2012-04-01 11:04:18

Frank,

Thanks so much for your comment back- I have read most of the posts on this site, and you always have a seemingly very positive attitude toward based in reality regards to our situations.

Getting this feedback is really helpful to me personally and really, I guess the reason we all join and share our experiences- to know we are not alone in this, and that it will be a positive experience.

Right now, only, only just day 3 post recovery, and I am certainly probably feeling some emotions and limitations that I really did not expect- It is major surgery and I guess I tried to minimize that in my mind, since I could walk around and do most anything I wanted to afterwards, with some minor restrictions.

But, I am now getting I sort of have to let my body and mind adjust- and in time, will be back to my old self.

Just didnt understand how difficult these first days post recovery would be- this is an important part of my story- and sharing that angle might help prepare someone in the future that has a similiar reaction- I guess my ego was a bit shocked that I wouldnt recover and be normal in all of two days!. haha

Again, thanks for the good word,

Jeff

Similar story

by Denise Aug - 2012-04-01 12:04:05

I just joined this site, stumbled upon it accidentally. I too just received my PM on 3/29, although mine was an emergency. Like you I have been fatigued for a very long time and just continued to push myself. I am a massage Therapist and 45 years old. Most recently I had been extremely fatigued waking up feeling like I hadn't even slept, so I drank extra coffee LOL. Then Inhad started to get some jaw pain...then on Wednesday chest pain. So off to ER I went. I think the ER Dr truly saved me, because they couldn't find anything wrong with my heart. Every single test came back good, on his instinct because of fatigue & jaw pain he insisted that I stay. After I was admitted he STRESSED to me to not let anyone send me home. So of course the Dr that took over thought I had heartburn and wanted to send me home..first time I ever spoke up for myself and told him the other Dr said I should't go. Thankfully my oldest son therevto back me up on that. Well during the night my BP and HR fell. I buzzed the nurse when I saw my BP going down..I felt miserable....the last I remember was 83/43. I think I blacked out...I felt like I left my body...I couldn't move....I kept hearing she's bradying. So thankfully I was in hospital. Anyway in the a.m. They did a cardiac cath...no blockages heart COMPLETELY healthy. So determined I need a PM. Well before surgery the Dr showed me my strip....basically my heart was stopping at 10 seconds at a time. He said he had never seen such a sharp drop on someone my age before. Anyway I am here, I believe because that ER Dr had good intuition. I can't imagine not being here for my children. I keep looking at them thinking this could have been a very different weekend. Anyway thought was similar because like you I am healthy and same age. As for my recovery I doing fine...the site is uncmortable and sleeping at night has not been easy. Unfortunately because of my job I cannot work for 2 months....that stinks....but on the other hand I am here and grateful. I wish you a speedy recovery and I am assuming you see your Dr on Thursday like me.....so I wish you all the best!

Recovery is a very individual thing

by jds66 - 2012-04-02 01:04:11

Denise- thanks to God that you were saved and the worst didn't happen! We are both too young to say good bye to this life- I have two kids also, 18 and 14, so I totally get what you are saying in regards to how much you have at stake. Your experience must have been scary as heck, I mean, you were living it in an emergency situation- which just adds to the stress of it all.

Frank- I hear you on the recovery thing- right now on Day 4, I am just not feeling it, feel like I have gone backwards for a couple of days, the light headness is still with me- and it has my stress level through the roof.

I know recovery is a very individual thing- I just didnt expect to go in reverse from my Day one post op to feeling pretty much worse than I felt in some respects before my surgery.

Maybe this is part of recovery, or part of my recovery, but at the current time, it feels like a day to day thing, last night it felt like an hour to hour thing- I only hope to re read what I wrote someday and say, "man, that was a rough time I went through"

Right now, it is my reality- Still, hang in there Denise, you have alot to be on this Earth for- thank God for the solution you found.

Recovery

by Denise Aug - 2012-04-02 06:04:24

First I want to thank you Frank for your reassuring comments..I am very glad that I now know I will be here a long time for my children. Thank you for your advise on sleeping. I had ironically tried that last night...but because I had cardiac cath done on rt leg it did nit last very long.

Jeff; I have to say that in the beginning I really felt good, but like you I kind of feel like I am going backwards. Yesterday I started with S.O.B. So back to ER we went, after more blood, ekg, ultrasound, and chest x ray.I was ok. They thought maybe stress from the trauma. I do feel very fatigued..and again today experienced some SOB. I guess my body adjusting to new heart rate..like you I had low heart rate...and I am far from an athelete. So funny because so many symptoms you described I had. Brain Fog, dizziness, oh I also had numbness down my left arm..and being a massage therapist tried to massage my neck thinking pinched nerve from how I sleep. I guess that heart rate actually normal I feel like it's beating so fast. Today I was walking around the house not doing anything but just had to move..not used to sitting around all day....then after that tired so sat around all day LoL. I figured first week out might as well rest. We also had a Disney trip booked over Easter break. The Dr said I can go..but no rides..which is fine, we were actually going to surprise my friends that we have not seen in 3 years. I can't wait to see her, I will just rest, and everyone else can go about whatever. We have vacation club and we are going back anyway. So my first visit on Thursday hoping less fatigued by then. Hopeveach day is finding you better. Please listen to your body because now I now personally it's never wrong. Work and everything else will still be there when we are healed!!!
Denise

Recovery Comments

by ElectricFrank - 2012-04-02 12:04:21

Jeff: For me the important thing is too listen to my body rather than someones time schedule. While most of the time I'm up an at it in a hurry, there are also times when my body says slow up a bit. So a little self awareness goes a long way.

Denise: I can understand your feelings about your experience. While not as serious as yours I had a situation where my HR suddenly dropped to 40 and then slowly headed south to around 26 before surgery. It all depends on the location in the heart of the electrical block as to how low the HR goes. It can actually stop.

You did a good job having the presence to buzz the nurse before things became too bad to do it.

Keep in mind that electrical blocks like we have aren't much of a threat once the pacemaker is installed. I'm essentially back to normal and do anything I like. You can plan on being around for a long time for those kids.

Like any surgery it takes a couple of weeks at least for an incision to heal, and a bit longer for the leads to settle in. Even though you can't work for a couple of months don't let that keep you from becoming active.

By the way try sleeping on the side opposite the pacemaker with a pillow in front of you to support the upper arm. The idea is to avoid squeezing the incision which can hurt. It's strange, but the hospitals have never caught on to this one. When I asked for an extra pillow the night after implant the nurse was surprised what I was going to use it for. I slept solid the first night (partly due to instructions to not wake me up for taking readings.).

best wishes,

frank

Thank you and my story...

by reds_threads - 2012-04-04 04:04:24

Jds thank you for starting this thread. I find all the comments enlightening. I will be trying your idea for the nightime arm contraption. I recently woke up with my left arm behind my neck. I also inadvertently stretch while half asleep. This caused me bad headache, some pain and blurry vision. I go in today to make sure that I did not dislodge my leads.

Oh, my story. I've suffered from severe sinus infections for years. I'd had once since before Christmas and my ENT said he could fix it with surgery. Sort of a roto rooter procedure. I agreed. I was suppose to bleed for only a couple of days - one month later I was still having problem and developed pneumonia. I was admitted to the hospital on March 7th on March 9th I 'mild' Code Blued while having a chest x-ray. On March 10th they said I needed a pacemaker. What?! I was so sick already and now they throw this at me. I didn't know the doctor and was having a hard time dealing with this news. I called my son (he's in the medical field) and asked him to call the doctor and ask why I needed one. He quickly called me back and said, "Mom your heart rate is at 32 and you just can't go on with it that low. There is no decision for you to make - have the surgery" So that day, I got my shiny new pacemaker.

This news sent everyone who knows me into shock. I know I'm old. I'm 63 with 6 grandchildren. With that said, I'm pretty fit. I knew that I was starting to tire more easily and was frustrated. I chalked it up to getting older. I was hell bent on pushing myself, though. I've got a lot of living to do. I recently took up kayaking and have yet to be able to put my new kayak in the water. This is the hardest part of my recover - waiting 3 months before I can hit the water. Weather permitting, I also swim. I eat a healthy diet. Oh, more good news at the hospital. They said, I'm pre-diabetic, 40% of my left caroid arties are blocked and I have low tyroid. Dang those genes! I have been told I have to get my allergies under control. This is what got me in the hospital to begin with - then again - maybe I should say - thank you sinus infection. If I hadn't been in the hospital, I wouldn't have received their nice parting gift.

For years I've had problems with my feet swelling and have mentioned it to my doctors. The quick EKGs they do didn't show anything. About 15 years ago, I had sever bouts of passing out now and then. I was told I had a hyper autonomic nervous system and needed to not get to hot, too cold, eat protein, get proper rest and that seemed to do the trick. I now wonder if it my my heart all along. The swelling in my feet immediately went away - yeah.

Sorry for being so lengthy, but just wanted to get it all out at once. I promise to not go on and on in the future.

3-29 PMs for Jeff & Denise

by natandhop - 2012-06-25 06:06:21

Hey there,

We're in our 3rd month of our new heartbeats - my pm was implanted on 3-14-12 and was wondering how you 2 are doing?

Since June, most days I feel good to great with only 1 -2 days a week of still feeling pooped. My incision is healing nicely and at my 3 month check up had my upper limit raised from 130 to 170 to accommodate my running. I still get a stinging sensation in my "pocket" of the pm and the bruising in that area continues to be evident. I'm using Scargo oil which helps the skin all around feel better.

happy heart day,
Natalie

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It is just over 10 years since a dual lead device was implanted for complete heart block. It has worked perfectly and I have traveled well near two million miles internationally since then.