Feeling Uninformed

Hi,

Just become a new member. Had my pacemaker fitted two days ago. All happened quite quickly. On reading forum most of you seem to know exactly what your tracking is. I haven't got a clue. Are there OTHER things I should know about my device? Feel as if I should have asked many more questions.

Info I picked up so far (Cardiologist was talking very quickly!) is MRI compatible, 2 lead and on searching the internet think the words he must have used were Sic Sinus Syndrome. My heart suddenly went from beating to dropping and stopped for 6 seconds.

Also was told not to lift arm above my head for 2/3 months then given a booklet to take home which said 1 month?

I'm a fit and healthy (Or so I thought!) 53 yr. old.

Oh dear!


13 Comments

Feeling Uninformed

by Good Dog - 2015-02-26 02:02:28

I can identify so well with your feelings! I was 38 years old and perfectly healthy one day and discharged from the hospital with a pacemaker the next. I went into a full heart block (3rd degree) with a pulse of between 8 and 12 bpm before the implant.

My doctor discharged me from the hospital and told me to do nothing until I returned to see him in 2 1/2 weeks. He then left town to go on vacation. Problem is; that is all he told me. I had no idea what to expect in the coming days, weeks and years. Talk about depressed!!! I watched out the window at my neighbors shoveling snow while I thought my life (as I knew it) was over!
I eventually discovered that I could do anything anyone else could do and now 28 years later I am so grateful. My life has been perfectly normal. To the extent that if I didn't need check-ups and battery (generator) changes, I wouldn't even know I had a pacemaker.

That's how good it can be! So get out there and enjoy your life...................

Feeling MORE INFORMED!

by Elmo - 2015-02-26 03:02:47

Thank you all for responding so quickly today. Your positive, informative and sensible responses really have helped this afternoon.

I felt as if you all realised I felt a little "in shock" as well as feeling uninformed.

The website recommended by Lurch also made very interesting reading. In fact, this morning I had been concerned at the lack of mobility in my arm due to soreness but also fear of moving the leads.I I now feel more confident to very gently exercise.

I really do feel so much more positive with regard to the future with a pacemaker - THANK YOU!

Feeling Uninformed

by robomom - 2015-02-26 10:02:14

I also was a fit and healthy 67 year old and under physical stress had 3 fainting episodes. Underwent stress test which led to a heart cath, no blockages. I had another episode and they set me up for a tilt table test and during this test my heart stopped for 10 seconds and before I left the hospital I had a pace maker. It was a mental adjustment but 6 months later I am adjusted and while think about it some it is not my first thought each day. I also could not raise my arm over my head for 12 weeks, no lifting over 5 lbs, could not sleep on my right side. I am doing well now and hopefully you will adjust quickly.

Feeling Uninformed

by Elmo - 2015-02-26 10:02:31

Thanks Robomum. I think it will be the mental adjustment for me also - just didn't expect to be having any problems until much much older. The outercasing is 53 yrs old but the inner is 25!!

Thanks for mentioning the 12 weeks with regard to your arm I did think the 1 month mentioned in the booklet was maybe not long enough. Was it that you couldn't sleep on your right handside or you had been told not to?

There's a lot of stuff

by Theknotguy - 2015-02-26 10:02:43

There is a lot of stuff to learn - if you want to. Some people do, some don't. You'll find you get a lot of misinformation. Some of it from well meaning people, some of it from medical people who should know better.

Lifting arm, lifting weights. Standard time is 4-6 weeks. Depends upon your fitness level and how well you heal. The main thing is for the PM pocket to heal and the leads to be incorporated by the body. If you pull a lead you'll know it because it hurts like hell - personal experience. If you forget and lift your arm above shoulder level, don't go into a panic, just don't make it a habit. That's for the first four weeks. Same for weights over 10 pounds. If you wake up from sleeping and find your arm over your head, no big deal.

Security stuff. The newer PM's don't seem to have any problems. So don't worry. When you travel carry your PM card and show security people. Last response I got was, "Yeah, yeah, you gotta pacemaker, now get in line!"

You don't have to worry about anything around the typical house. Any problems with magnets, high tension wires, etc. are usually in industrial settings. So when your car remote or some such equipment says it can cause a problem with pacemakers you can usually ignore it. Lawyers are eager to sue for any reason so the warnings are to CYA for the corporation.

Keep moving, don't sit. Don't exercise too hard for the first four to six weeks. Drink plenty of water. I'm taking 1/2 liter per 33 pounds per day. But I'm also on some medication that dehydrates me too.

If questions, post on the forum, we have a lot of well informed people. And since we have the PM, we know.

Get back on with your life. If you look around the forum you'll see a lot of people doing just about everything. Sometimes doing more because their heart is working better with the PM.

If you get depressed after getting the PM, talk with someone who isn't a relative. Sometimes it's a little hard to get your mind wrapped around the situation. But once you understand you can lead a normal life it isn't that big of a deal. But just the same, don't ignore your feelings. Just because I paint a rosy picture doesn't mean it's the same for you.

Some people like to get their PM reports. I like to get mine because I learn something every time I get one. Can't read everything on the report but a lot of good stuff to know - if you want to that is.

Sign up for your patient notification on you PM website. You can always ask them questions too. Just remember sometimes you'll get a very terse or guarded response because they too are concerned with lawsuits. I've gotten really good info and I've gotten not-our-problem responses.

Go to your appointments. Take your medication.

Welcome to the PM club. You've got a lot of living to do. With the PM you can do it. It's a big world out there. Now go out and enjoy it. My best wishes for a quick and smooth recovery.

Welcome to the club Elmo

by IAN MC - 2015-02-26 11:02:09

I see you are from the UK, as are many of us on here, so welcome . There are people of all nationalities in the PM club so there is a wealth of experience to draw on should you need it, but occasionally responses on here are not relevant to the NHS system of care.

If you feel good I guess you don't need know anything at all about your pacemaker . Some of us on here are far more technically inclined (or maybe just more nosey) than others and like to know the ins and outs of all the various PM settings.

You should have been given a pacemaker card, which most of us carry with us most of the time and this should give the make and model number of your device.

It should also say whether it is MRI compatible or not, and it maybe lists some of your settings.

I imagine that you have been given an appointment for your first check-up and that is the time to ask any questions. The Cardiology Physiologist who will carry out your check-up is highly trained and very knowledgeable. ( I believe they are unique to the UK and are more highly-trained than the people doing the check-ups in some other countries ). You may not see your cardiologist again. You may or may not need some tweaks to the PM settings at that first appointment.

On the " arm above the head question " as you have already found out it depends on who you ask but 6 weeks seems to be the commonest view.

Oh , in answer to your last point , you ARE fit and healthy , you have just had a minor electrical problem of the heart which has now been fixed so best of luck; and anything you are not clear about just ask on here.

Ian

information

by AnaLena - 2015-02-26 11:02:27

Hello Elmo,

I'm 74. Heart healthy except my electrical problem of heart block. Have had my PM 13 months. PM implant on Monday, home on Tuesday, back to work on Wednesday. Sedentary job. Now, I'm back to a good fitness level (I had lost a lot in the run up without realizing it). Walking a lot, stair climbing, tai chi, and back to normal level of activity. Don't even think about my PM except to be grateful.
When you have your first pacemaker check request a printout of the reading. Then, come to this site and look at abbreviations to begin to understand the technical language. And use Google, too. It really isn't that hard but takes a while to learn. Ask the pacemaker tech questions. They may not have the answers but it pays to ask. I find that my pacemaker tech is the intermediary for my EP, which seems to work well for me. Next is your cardiologist for questions.
Be sure you use your arm, just don't reach above your head and don't lift or carry anything that weighs more than 10 pounds. Move your arm though-- don't want to get a frozen shoulder.
Expect odd little feelings at the site--twinges, tickles, etc. Seems to be related to your body and your pacemaker becoming one.
Come to this site regularly to read what's going on and ask questions.

Enjoy your bionic heart.
Ana Lena

Opinions differ...

by Lurch - 2015-02-26 12:02:42

First, welcome to the group (no differing opinions on that topic....)

As for keeping the arm immobile following the implantation of a Pacemaker or ICD there is a huge difference of opinions.

About an hour or so after my implantation the surgeon came into my hospital room where I was walking around wearing a sling that the nurse had given to me. He took it off and threw it across the room! He told me to only wear it while sleeping for the first week or so, or if I was doing something stupid and needed to be reminded not to lift my arm over the head repeatedly. He, and apparently, many other doctors are more concerned for the joint damage caused by the shoulder being immobilized then movement pulling the wire loose.

If you have some time, the link will take you to an interesting study regarding the immobilization of the arm following surgery:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2626349/

Welcome

by Grateful Heart - 2015-02-27 10:02:27


When we first get our PM/ ICD, the problem is we don't know......what we don't know. :-)

Needing a PM means your heart problem (like most of us) is electrical, so you are still fit and healthy.....just even better.

The questions will come.

Grateful Heart

A proposal....

by Lurch - 2015-02-27 10:02:56

Maybe it should be required for any doctor that implants PMs or ICDs be required to have one first!!

I am sure they would change the way they relate to patients if that were the case!!!

You're right Lurch

by IAN MC - 2015-02-27 12:02:56

- All neurosurgeons should have had brain tumours

- all obstetricians should have had babies ( tough if they're men but it should still be compulsory ! )

- all venereologists should have slept around until they caught something

- we don't want orthopaedic surgeons touching us unless they've got artificial hips

- all geriatricians should be at least 85 yrs old

- all paediatricians should wear diapers

I am fed up with doctors not relating to us !

Cheers

Ian

Same Issue

by Mywingman - 2015-02-28 05:02:54

Hi Elmo,

Your story is very similar to mine. Healthy then one day March 18, 2014 went to the ER with a heart beat well below 60pm. 2nd degree heart block heading to 3rd degree. Next day a PM was put in similar to yours with two leads and MRI compliant. I am going on a year with my heart of my heart. No issue other than a better adjustment for my exercises program. It now balances between 60bpm to 130bpm. The top end was to low for my running program. The moved it up for me at the PM Clinic. You will see them every 6 months to confirm PM status. I was back to work in a couple of days and my Aviation Medical was back in place in 6 weeks. I am back flying commercially again. Grand Kids like me around still and Life is good! God Bless the Pace Maker.

Mywingman.

Need to "get a grip"

by Elmo - 2015-03-06 10:03:57

Thanks "Mywingman". Really pleased you're doing well. Find it amazing that you were back to work so quickly as my head is willing but my body is just so tired. Normally I grit my teeth and "get on with it" no matter what happens in life but this has really knocked the stuffing out of me. Annoying thing is I didn't feel tired before sudden collapse.

Was told Sic Sinus Syndrome but now been told by nurse over the phone that my notes read 3rd degree block?

Got an appointment in couple of weeks for wound check so hopefully by then will be feeling wonderful, amazing and more energetic!!

Best.

Elmo.



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Member Quotes

I just want to share about the quality of life after my pacemaker, and hopefully increase awareness that lifestyles do not have to be drastically modified just because we are pacemaker recipients.