It almost feels like I"m back in The Waiting Room. . .

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epstns

Premium User
Supporting Member
Joined
Dec 26, 2002
Messages
5,201
Location
Chicago area
I'm back here, just hanging around waiting again. When I saw my EP, she said that I needed to get my pacemaker lead and generator changed "sooner, rather than later." She then referred me to their top lead extraction cardiac surgeon for scheduling. That surgeon is the one who couldn't even get me into his consult calendar until July 19, and would then book the procedures about 3 weeks after that. I was sort of surprised at the seeming lack of urgency on his part, so I called my EP's office and explained the scheduling situation to them. I got a call back about half an hour later from my EP's assistant, telling me that my EP most certainly did not feel that mid-August was "sooner" and that they would communicate with the surgeon's office to get me an appointment sooner. They would have the surgeon call me back ASAP. That was about 9 AM yesterday. Since then. . . silence.

So now, I'm here waiting some more. I know what needs to be done, but not when. I also have no idea of what other tests and procedures will be required, nor do I have any information regarding my pending hospital stay and the procedure and recovery situation. I do know that the procedure will be performed/attended by up to 3 cardiac surgery specialists, and it will be done in a hybrid cardiac OR/interventional cardiology lab and that I will probably wake up intubated, in the CICU. This is starting to sound serious, but there is nobody I can talk with to get the straight story to put my mind at ease.

This is on top of some other non-trivial medical issues that are still in the unfocused stages.

Right now, it is all uncertainties and ambiguities. I hate when that happens.
 
The waiting and uncertainty are the worst. I've been stunned by the lack of concern of some of these people. Not even a reassuring phone call, or someone to answer your questions. Having said that, I wouldn't have thought it's as major a procedure as valve replacement.
 
PS Ring them yourself and tell them your anxious. Call the hospital and talk to one of the nurses who is familiar with the procedure. That's what I would do, anyway.
 
I do plan to call my EP back, but I will at least give the scheduling office an hour or so this morning before I call. I didn't expect a call right away, but I sort of did expect a call toward the latter part of yesterday afternoon.

I know this procedure is not likely to be anywhere near as involved as valve replacement. It is just that I'm not sure how involved/invasive it really is until I get someone who does it to talk with me - and that is proving elusive.
 
Well. . . they emailed me. They are now trying to get me into the hospital for the actual procedure the week of July 11th. That means that I would have to see/consult with the extraction specialist next week, as well as complete any remaining pre-op testing.

So much for any serenity in MY life.

Oy!
 
How's the serenity scene from an Australian movie Steve



"the faster you go the more you see"

I hope you get at least a little laugh from one of my fav Australian comedies
 
HI Steve,
Just seeing this recent 'update' on you. So sorry to hear the news that you have to get your pacemaker replaced/changed this soon. That kind of news is enough to throw anyone for a loop (no pun intended). If it is of help to you, I know a gentleman who had his first pacemaker put in in his 20's and is now on his 5th in his sixties. He said each 'new one' was an improvement over the old.

I wonder if it would help for you to check in on a pacemaker forum to see if you can get any more insight?

We are here for you and will be cheering you on through this.

:)
 
hiya steve, sorry to hear your going through rough time atm, the only chap ive spoke to who had his pacemaker etc changed was a chap I sometimes bump into at the gym, for what its worth he didn't seem to think it was a big op and gave the impression it was pretty straightforward, I was to busy looking at some eye candy if im honest and wasn't taking a great deal of notice lol, am sure you will be fine and keep us informed,
 
epstns;n865933 said:
I

Right now, it is all uncertainties and ambiguities. I hate when that happens.
Click to expand...

Steve, that stinks. So frustrating. I think many folks in the medical field forget that what is routine for them is uncommon for the non medical types. I hope this us not a precursor to things to come. The waiting is the hardest part IMO. Especially for action oriented people!
 
No further calls from the hospital yesterday afternoon, but at least I know their approximate timeline. That helps me to plan for the immediate future, and to know at what point I need to put the rest of my life "on hold." The exact date will firm up, but at least I know which week they want to get me there.

I am (still) a member of PacemakerClub, so I do check over there for related info and patient experiences. Not too many folks yet posting about lead extraction, though. That is what makes my situation unusual. If it was "just" a generator/battery change, it would be an outpatient procedure and I would have just mentioned it in passing and gotten on with life. This one, though, is much more complicated. They want to remove my failing lead, then put in a new lead and a new pacemaker. Their reasoning is that I am young enough (at 68) that I could actually live long enough to need another lead replacement, and they don't want to leave my veins full of old non-functional leads, as they want to be able to abandon an old lead at some time in the future if necessary. They feel that younger patients are more likely to have an easier time through the procedure and recovery, and if the worst happens and they have to do a sternotomy to fix some massive boo-boo, I would have better odds of survival now than I would have 5 or 10 years out. It makes perfect sense, but it can scare the crap out of me, too. It doesn't help my sanity any to know that they will have 3 surgeons and a full heart surgery team scrubbed in and will be prepared to do a full sternotomy if necessary, either. I also know that they plan to use full general anesthesia, I'll be intubated, and they will also jam a TEE probe down my throat to monitor for effusion around my heart, too. I've warned my wife not to panic when she sees in the recovery room that I look like I did after open-heart surgery. I've also warned her that they will probably move me to the cardiac ICU, rather than a step-down unit immediately after the procedure, just to maintain closer watch on my heart for the first hours.

My biggest fear, one which is purely emotional and probably not too rational, is the fear that this procedure and its recovery will mimic the train-wreck that was my valve surgery. First it was just a valve. Then we found that I needed a bypass. Then after surgery, all the rhythm issues and the pacemaker. Then all the side effects of the meds, with the resulting re-admission to the hospital a month later, then the weeks and months getting the pacemaker settings right and so forth. I know there is little direct connection, but I am not as happily confident as a new, first time patient would be expected to be. After all, I've been there. I got the T-shirt, but I couldn't wear it because I was not allowed to move my left arm high enough to put it on. . . and by the time I was allowed to move enough to put it on, it didn't fit any more.
 
Do let us know when you know more Steve. I do hope the cardiac team know of the problems you had before. You know we're all wishing you well on here but I can understand your feelings, Anne
 
Hi Steve:

You will be OK! I know that at this point you have surely surfed the Internet looking for information about your upcoming intervention. That is not probably the best thing to do -but VERY hard to avoid-, because we tend to retain just the bad news. This is from the Cleveland Clinic:

"Although results and risks vary from patient to patient, over the last 10 years, the overall success rate for lead extraction at Cleveland Clinic is greater than 99.5%. The risk of internal bleeding, tear in a vein or heart, or death is less than 0.5%."

So try to calm down and stay positive!

Regards
 
Steve,
Sorry to hear that no one in the Pacemaker club could be of help. I am pretty certain that the gentleman I know had leads changed as well as pacemakers. I would have tried to put you in contact with him, but I know he is travelling right now.

When you 'got more than the t-shirt' first time around, I completely understand your trepidation. I recall feeling like I had been punched in the stomach when a 'small aneurysm' was mentioned a few years after my surgery.

As Lisa2 said "the hardest part is the waiting and although these procedures are routine to the experts,they certainly are NOT routine to us".


"It doesn't help my sanity any to know that they will have 3 surgeons and a full heart surgery team scrubbed in and will be prepared to do a full sternotomy if necessary, either."

The way I would look at the above comment is the specialists are being FULLY prepared for anything, but that doesn't mean you will need it. But, having all plans in place, will give you the best outcome".

Mustering up my most positive thoughts and prayers for a successful and smooth outcome. :)

Please keep us posted.
 
Hey Steve,

So sorry that you have to suffer through this whole ordeal. I hope that you are able to get some peace of mind soon. Sounds like you could really use it. I expect that things will be better this time around. I will keep you in my thoughts and prayers until I read your post in recovery. Positive vibes coming your way!

Tom
 
Well, we have a small amount of information on which to begin formulating a plan. The lead extraction specialist's assistant called me today and set a consultation appointment for next Tuesday July 5th at 11:30 AM. Since Monday is a national holiday, that's about as fast as I could ask. They also said that they have my procedure scheduled for the following week, on Wednesday July 13th. That is precise enough for me to begin to plan to be away from work, etc., although I realize that the procedure date could move either way. When I had my valve done, I was scheduled for Tuesday AM, but they called me on Saturday and asked if I could move up to Monday. I guess it can go either way, but at least I know their plan and can work with it.

I expect I will know a lot more after consulting the specialist, and will keep everyone posted.
 
Oh, and a brief P.S.

I reviewed the reports from my chest X-ray, echo and electrocardiogram from last week. Although there was a lot of verbiage to digest, the final line of each report brought a big smile to my face. All 3 reports said something like "No substantive differences noted from the test and report performed on March XX, 2011. So, they are saying that physically, my heart and valve are working just as they were immediately after the valve surgery over 5 years ago - same valve area, same pressure gradients, same EF. . . basically I'm doing just fine except for the electrics.

So -- bring on the electricians!
 
Well that's some better news. I hope that things go smoothly for you this time around Steve. I'll be pulling for you.

Tom
 
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