Questions to a question!Help me out..

I posted an answer to a post and thought I would post it on here to see what those of you think. I am really interested in your opinions . I want to see if this is a true statement or I am simply feeling it myself. I told her that in my opinion before your "implant" the docs seem to make it all appear so easy and almost like it is like removing an ingrown toenail. (Not those words exactly but my post went towards those opinions) I have read others that posted and would like to hear from more about the following statements.>>> You will see that what the docs say "you"ll be up and about in no time" "easy as can be" "not really surgery, but a procedure" "It's an implant not really suregery" Is simply not the norm for those posting to this site.You will see that that complaint is talked about very often. In fact it was talked about again just a few days ago to the "Newbies" . I would love to have that be the next poll taken. Did you recover in the time you were told, or expected? Was your recovery as simple as you were led to believe? Were there more complications than you were led to believe? Was there more pain than you were led to believe? Last but certainly not least, did you feel the doctors made you feel you were in the minority with respect to recovery and pain , as well as the whole healing process?
Thanks for your time and any responses as I am really interested in your imput.
Susan


13 Comments

Two different points of view?

by johng - 2007-07-10 03:07:12

Susan,
my experience of having a PM. 'fitted', was a lesson in seeing the thing from different points of view.

1/ Mine: I was really worried and didn't understand what would be the consequences of having a PM.

2/ The surgeon(someone I know), does 'this procedure so regularly', that he asked me if I would be happy to have the PM. fitted on the Left side. I agreed, and after the PM. was fitted he told me it was because his colleague had very little practice 'on the left'.

The procedure took about forty minutes, and after three hours observation in the ward, I was allowed to drive home.
Physically I have had a great recovery............but mentally I didn't recover well. That took more than six months to adjust to this 'Routine procedure'.
I will answer any specific questions you have, if you just ask.
Johng

Mine was as easy as they said it would be...

by sboissonnas - 2007-07-10 04:07:25

I know a lot of people have had a lot of serious complications from their procedures, but I count myself blessed that I wasn't one of them. My docs told me everything that was going to happen, and it all happened pretty much as they'd prepared me to expect. I would point out that they did NOT diminish the seriousness of the surgery with me - they very carefully explained the risks and potential complications, and said that although the procedure "could" be done as an out-patient, they really preferred it to be done as part of a hospital stay, as mine was. (However, the realities of insurance doesn't always make this possible.) If anything, the staff was maybe more accommodating with me than I expect they are with most people (despite the fact that my mother was throwing lists of questions at them every time they walked in the room!).

I'm not sure I really "count" in answering this question, though, since my pacemaker is really "just in case" I have any more vasovagal or long QT-related syncopes, so I don't really "need" mine most of the time, if ever. At 32 I'm still (relatively) young and recover quickly, and I was treated at one of the premier hospitals in the country. From what I've seen in other posts on here, I got extremely good care and very conservative post-op instructions for caring for myself and my pacemaker afterwards. (And I listened to my doctors and tried as best I could to follow their orders.) The pain wasn't bad, the recovery wasn't worse than they told me it might be (they were very up-front and told me I wouldn't want to go to work the next day, but after that it would depend how I felt and not to rush it), and I - thankfully - didn't have any infections, moved leads, or any other complications afterward. I also made very sure not to try pushing myself in anything, even after the 6-week limited-lifting recovery period ended. While I've had my fair share of scar itches and tenderness moving my shoulder around too much, it hasn't ever been unbearable, and after a few months I sort of stopped noticing it as much anymore.

My heart really goes out to all of you, though (er, no pun intended) who've had such difficult problems to overcome with your surgeries and recoveries.

-Stephanie

answers to susan's ?'s

by luckyloo - 2007-07-10 04:07:34

dear susan :

no, no, yes, yes and yes!

my first implant...piece of cake

my second (due to 1st year resident practicing on me) had serious complications.

if only i had a nickel for everytime i've heard "you shouldn't have this much pain" or "what you are experiencing is not from youyr pacemaker"...i'd be a rich woman.

dr.'s don't tell you what the "future" may entail with these also....occluded veins, infection etc. BUT, if you need the device you need it.

luckyloo

We're all Different

by auntiesamm - 2007-07-10 04:07:58

Hi Susan, You raise some really great questions and John made some good comments. Each of us is so very different that it is hard to say how a poll might come out but it sure would be interesting! My PM was done on a more or less emergency basis. Having had no real symptoms I could point to, one day when I took my BP on home monitor my HR was 30. First time it had happened. That particular day I felt like I had the flu - dizzy, diaphoretic. Saw my PCP immediately, had EKG, sent to ER, admitted to ICU. Cardiologist thought it could be due to the very high doses of atenolol I had been taking. Gave me 24 hours to try to flush it out of my system. He did tell me then I most likely needed a pacemaker. Being familiar with PMs having worked many years in the hospital industry I was okay with that. Knowing what the alternative could be without a PM made it a "no-brainer". It became evident it was not the atenolol and I got my PM. Went home the next day and have not looked back. I was one VERY HAPPY woman knowing that my heart rate could not drop below 60 without the PM kicking in! I had only minimal pain that Tylenol took care of. Did have a little bit of infection in incision which healed quickly with antibiotics. Hardest thing? Not raising my left arm above shoulder level. My PM was on 5-18-06 and I have not looked bad or had one moments regret. In fact I realized very quickly that I had been feeling lousy for a while without really acknowledging it. Sorry for thelong story but just want everyone to know that not all PM recipients have problems post-implant. Most days I do not even think about the pacemaker. When I do think about this little gem of technology I am so grateful I have it. Maybe some of the others will respond as well and you can do an "informal" poll which I am certain most of the readers would be interested in. On another note, Susan, how are you doing? I still pray for you everyday and hope things have settled down after your traumatic situation. God bless you, my friend.
Sharon

Falling off a log!!!

by Peter.Nash - 2007-07-10 05:07:00

Hi Susan,
I think the difference between what you are told to expect ...and what you actually get...is largely down to how good the surgeon and his team are at their jobs....they are no different to any other trade ..there are some excellent people and some average and some bad.....
I was lucky I had one of the best in the Uk implant my ICD....very good at what he does but very direct in his approach... no frills no nothing ..drew me a diagram.. and said it could be 10% this or a 20% chance it is that and so on.....I had an eps study done within 3 days and he told me I had DCM... and would need an ICD because I was at risk of sudden death...... it all happened so fast I did not have time to really grasp what was going on.... within a few days I was having surgery for the implant..... (this is in the uk)..... just before the day arrived the consultant said he had some American heart specialists here and they wanted to put me under and test drive a new PM for children ..so I was in surgery for 4 hours...... I had no problems what so ever..... although a couple of strange things happened... I was told the usual ..don't put your arms above shoulder height ect. and went for an xray before I was allowed home and the girl taking the shot said please put your hands above you head..I said are you sure about that......sorry she said I was thinking of another patient.....but you have to have a sense of humor don't you.
The other thing I thought was strange was ..I was asked which side I would like the device implanted......being left handed I decided the right would be best and I was duly shaved on that right side When I woke up they had put it on the left handside.. something due to the wires have to be short for maximum effect.... .

Anyhow in all it was all much as I was told to expect I had no problems with the ICD site it healed up very well and you would be pushed to see the scar... the trial scar took a bit longer to heal but really no problem although it shows a bit more than the ICD site. I have been 4.5 years now and apart from the odd time when I do something silly and know I shouldn't it gives me know bother..... now the Meds are a whole different ball game but that is another story....So as far as what I was told to expect and what I got... was spot on.
I must say that after about 3 years of nothing showing up on the downloads I was thinking the whole thing was a waste of time and money ..untill one day miles from home in the middle of a field my ticker went crazy ..and I remember thinking this is my lot and this gadget jumped in and done its job..... and it wasn't until I gathered my senses that I realised that the ICD had fired... I guess that is the only thing they did not tell me that this little thing can kick like a cart horse.... and people ask me does it hurt..... I guess if you think about it yes...but at the time it is so quick and over in a flash and the fact you are not expecting it ...hurt/pain does not come into it ..all I remember is dying one second and living the next awesome!!! So for me all the correct info a good job and worked as prescibed.....

Peter

The message for newbies.

by bowlrbob - 2007-07-10 06:07:52

i was the one who wrote the "newbies" statement a week ago or so. I did this because I believe the Doctors make it all sound too easy. I feel fortunate my recovery went what I believe is pretty good as compared to others i read here. My Doctor was very good, compassionate and listens well. But he deals with this every day he is an EP and to him it is EASY. So he forgets that to us it is a life changing experience. It is not like having your tonsils taken out. I don't believe they do it on purpose they just forget that we don't know what they know. Below is a copy of what I wrote so the new recipients would have some handle on what may happen. And also the great results in the back end of recovery.

Give yourself some time.
Posted by bowlrbob on 2007-07-04 15:00

Just a note to let the newbies know that it takes time. More time than the Doctors will tell you to get to feeling like your old self. My pacemaker was put in at the end of Oct. 2005 for VVS and Bradycardia. I know now that I was sick for at least a year before getting the pacer on an emergency basis. My heart stopped 2 different times for 18 to 20 seconds and was running at 10bpm on the way to the hospital. It took about 6 months time to get the correct settings for me. It has now been a year with these settings and I now feel as good as new. It did take that full year to get back to what I would call normal. I am now 65 and my grey hair color is even getting darker now. Still grey but more brown grey it is amazing what oxygen will do for you. I hope this helps all of you that have just received or are about to get a pacemaker. They are a miracle but it takes time for your body to catch up after being down for a long time. Bowlrbob

me too

by jessie - 2007-07-10 07:07:41

i was not feeling well for six months before it was diagnosed braddycharrdia. it was done, my pacemaker implant on an e.r. basis. i would say it took me about six months to recuperate where i felt good. i still get tired but now i know when enough is enough and i have a power nap. yes it is amazing what oxygen can do for one. lol lol jessie

expectations versus reality

by CathrynB - 2007-07-10 08:07:45

It seems strange when I think about it now that this is sort of a difficult question to answer, Susan -- but a great discussion!
My EP spent lots of time telling me what to expect and answering questions in advance, and was compassionate and patient. He told me it was "minor surgery" and I'd be back to normal in no time. He gave excellent post op advice, I got no infection, and no pulled leads. All of that turned out to be pretty much true.
What he didn't tell me is I'd get so sleepy every afternoon that I'd take daily naps for almost two months. Or that because I'm a very active person with very thin skin at the site of my implant, I'd have pocket pain, would develop a keloid (he wouldn't know that of course) and the thin skin would be painful even now, almost 6 months later. Day after tomorrow I'm having my pacemaker surgically re-located. If the electrical leads are long enough, they'll move it a couple inches toward the center of my chest to get it away from my shoulder, and a couple inches lower so it will be better padded by breast tissue. I'm told this is outpatient surgery, and I'll have only 2 days of restricted activity, then comfort/pain will tell me what I can and can't do. Since there's no surgical involvement with my heart or electrical leads, I expect that's accurate.
So no, the outcome for me has not been what I expected at all. I'm fortunate, however, in that all my cardiac symptoms are 100% resolved, so that's the good news.
I wonder, though, if most of the people who have a very easy experience with surgery and recovery, few emtional adjustments, and no complications, simply "forget" they have a PM/ICD and don't stay involved with this website. It seems possible to me that those of us who check in regularly do so in part because we have ongoing questions and issues or need help coping. And, of course, because the folks on this website are so fabulous, warm, caring and wonderful. Take care all, Cathryn

Re: Cathryn's last paragraph

by auntiesamm - 2007-07-10 09:07:27

Hi All - I am one of those who had an easy experience and quick recovery, no emotional adjustments. I have stayed involved in this website because of the terrific people on here and the fact that every single time I sign on I learn something new. Too, I feel strongly that I have a responsibility to share information and be helpful in anyway I can. I enjoy all the postings/comments; especially all the different perspectives from all over the world. Everyone has something very important to offer and I appreciate it greatly. I do know that some of the members who were most helpful to me last year do not sign on as often, but that doesn't mean they aren't reading the postings. Thank you again, Cathryn, for initiating this discussion.
Sharon

Great topic!

by tcrabtree85 - 2007-07-11 01:07:11

Where to begin. Do I agree at all with the doctors. Not for one minute. How can they judge how somebody is going to feel after a procedure I still don't get. My first surgery was in Jan. sec in March pm placed in March, and then just this following one in June. Then having a doctor saying you will be back on your feet in about two weeks. Ya right.. I remember just last week when I went in with so much pain they said I had no reason to be in pain.. They did state at my age of being only 21 I was going to feel more. Well I think it is all wrong.
As reading others posts I think it is more in the way the doctor handles things.I sometimes think it would be nice to have a doctor that has experienced everything come in and tell you, that you will need to rest a lot, you will get tired much eaiser, and to remind you that others aren't going to understand everything and you will have to explain to them that you are just warn out and need rest.
I think the key to recovery was rest and having the pm placed wasn't the hard part it's all the other surgeries built up so closely together to be the hard part. The pm itself is an amazing invention.
I'm interested to see what others have experienced.
Thanks for starting this!

Tammy

Thank you for all the answer but one....

by queen_beez - 2007-07-11 02:07:46

thing I want to say. I want to be clear .For me ,I am very happy with my Pm. I am almost symptom free iin respect to cardio problems. What I was asking is that it feels as though the "procedure" itself is talked about as just that. ALmost like pulling a tooth or something. Yes I was given alot of info. BUt really don't you think there was so much more info. that is just brushed over. I am not saying that there are alot of people that have complications ,I am of the opinion that the items we all seem to learn after the ICD/or PM is put in is great. Not necc. complications but items like pain at the site, it can last for months and yes we seem to finally get to the point of not thinking about it for a whole day but it takes alot longer than a few days. Sleeping on ones side,bras (for woman) ,seatbelts, The list that continues to grow of the items we must now avoid, ipods,weed whackers,fierce lightening stroms. I am experiencing a monsoon (w/lightening) right now.Thin skin w/ sore and pocket irratation. I anm very grateful with my doc and he was up front but it was able possible complications with "implantation"note not surgery. And infection. But I did not receive info on the many things I would not be able to do. Kickboxing,flag football,just to name a few. I think you all know what I am trying to say. I just wanted to be a little clearer and any more imput is always greatly appreciated. Any discussion is a good discussion regardless of ones views.
Truly,your "strange" friend,
Susan

hope you dont mind me copying this

by queen_beez - 2007-07-11 03:07:43

This was posted and I thought it would be a good addition to our discussion. Hope you don't mind ,Rusty, glad to hear you are on your way to recovery.Sincerely,Susan


almost 4 months
Posted by randrews on 2007-07-10 23:39

"I want to post an update on how I'm progressing. I'm 47 and got my pm in March for bradychardia. The surgery went well but I had a few tough weeks where I didn't think I'd ever get my life back again. But since that time things have gotten so much better. It just takes time, patience, and lots of encouragement, and it definatly was tougher that the doctors say. But I did get back to work(teacher), then my second job(painter), did a week and scout camp with my son, and tomorrow I take my first plane flight post pm. I mention this in the hopes of encourageing new members that things can get better. On the other end I have been diagnosed with Panic Disorder(a post pm condition) and am on medication and seeing a therapist to help deal with this. This is getting to be less of an issue.
The people here who post and encourage are vital to each others recovery. Thanks for being a part of mine.
Rusty"

No pain and back to work immediately

by hughen - 2007-07-11 05:07:29

My doctor said it would be painless and it really was--I'm not sure what they used, but the nurse said it was a margarita. The surgery was on Friday afternoon; I got out of the hospital on Saturday morning; I went back to teaching school on Monday. But I screwed up and had to have a lead repositioned about two weeks later. Again, it was painless. Had it done about 8 one evening after work and went back to school the next morning--this time wearing my sling ALL the time. One great thing that helped was that I had already watched a video of the surgery and knew what they would be doing. And the doctor and nurses kept me informed all the way through exactly what they were doing. Others might not want to know, but I did.

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Life does not stop with a pacemaker, even though it caught me off guard.