I never saw THIS coming my way. . .

[epstns]

I've been tracking my valve for all of its 5+ years with me -- with no issues noted. It has been just great. I've also been tracking my pacemaker twice a year for 5 1/2 years -- same thing. . . until now. Last Monday morning I noted that at my early AM BP/heart rate check, my monitor was showing that my resting heart rate was down to 45-48 bpm. I tried a different type of monitor, with the same results. That's where it was before I had the valve surgery, before my bradycardia was diagnosed. BP was normal, and as I got moving around, my HR went up to its usual range. I felt a little bit "off" but nothing crazy. Over the next few days, same thing. Low RHR in the morning, felt just a bit out of sorts, but I went on with work, gym, etc. at normal intensity. After 4 days of this, I called my pacemaker clinic and had my July interrogation moved up to last Friday. I went in, met with my favorite long-term PM tech and explained my situation. At first, she warned me of the notorious inaccuracy of the wrist-band monitors, but I told her it "just didn't feel right."

She hooked me up and began the interrogation. As soon as she got into it, her demeanor changed to one of concern. She tried various adjustments and kind of said "I see what you mean." The PM did not record incidents of low HR, but for some reason, it didn't always "trigger" a beat. She was able to discern that my system (heart and lead) now needs much higher voltage to trigger a ventricular beat. Atrial pacing was fine, only ventricular was affected.

Well, to make a long story short, we now believe that my ventricular lead is failing - even though it is only 5 years old. We had the Boston Scientific rep look in, and he agrees. They were able to adjust the pacing voltage so that I am now appropriately paced again, but we don't know why this happened or how stable it is at this level. So. . . I now have an appointment with my EP doc on Thursday AM for evaluation. It sounds like a lead replacement is in my near future, but we're not sure it they will choose to remove the failing lead or cap it off and leave it. We are also not sure if they will decide to change out my pacemaker at the same time, as it has only about 1 year of remaining battery life. If they're going in there, I'd much rather do both at once and not have to go back in just a year, but it will probably be the insurance carrier driving that decision.

I really did NOT need this at this point in time. I have too many other major issues brewing (some medical but not for this board, some household repairs, busy season at work,etc.) to be comfortable dealing with all of the unknowns and stressors. I feel my veneer of cool wearing very thin over these last couple of weeks, and I don't like what I feel.

Anyone else ever experience premature PM lead failure? They told me that these usually last 10-15 years, and I'm up for a new one at 5 1/2.

I'm most definitely NOT a happy camper!

 

[Paleowoman]

Hi Steve - really sorry to hear the pacmaker is giving problems. I do hope they can fix things easily and quickly for you. And sorry to hear that things may be driven by your insurance company too - they really should be driven by patient need. Do keep us updated. Will be thinking of you Thursday.

 

[honeybunny]

Have you done online research regarding the manufacturers track record on your pacemaker model? You may (or may not) find that similar fails have occurred with that model.

I agree it makes sense to have it replaced while the docs are in there. Unfortunately I know insurance companies may not see it that way. Sucks.

Can we offer support with any of the other stressors in your life?

 

[Seaton]

Hope this can be resolved soon, Steve. Good you followed your instinct (and readings!) and got it checked out sooner.
Best for Thursday.

 

[DachsieMom]

I'm sorry to hear about your situation. If your insurance company objects, and you have sufficient time, try to appeal. Your doctor can assist as well.

 

[Bina]

Steve, I'm very sorry to hear of your PM issue....sorry, I don't have any experience to share....Best wishes for a fast fix !

 

[Agian]

Take care, Steve. Respectfully yours.

 

[pellicle]

Very frustrating Steve, I hope that the solution is not too difficult

 

[Catie]

I have no experience to contribute, but surely hope things can be resolved quickly for you.

 

[Freddie]

I'll be thinking of you come Thursday Steve, pls keep us informed

 

[AZ Don]

Sorry to hear about the new issues. I can't advise re. pacemakers but I have some experience of being overwhelmed with work and life issues. I'm not much for prayer but I always liked this one:

God, grant me the serenity to accept the things I cannot change, Courage to change the things I can, And wisdom to know the difference.

That and prioritizing is how I dealt with being overwhelmed. Good luck.

 

[epstns]

Thanks for the kind words and support, everyone. I'm not sure what I feel so bad about -- I've been through this before when the pacemaker was originally implanted after my valve surgery. I guess I'm more worried about the post-op restrictions than about the need for the procedure. When the pacer was first implanted, I was still on restriction from valve surgery. This time, I will have to endure whatever the restrictions are surrounding the new lead and probably pacer. I sort of feel like "one step forward, two steps back" as I was just beginning to feel good after a long, crummy winter. Now, I'll be restricted in my activities for some major chunk of the summer. I also do not know how much time I will need to take off from work, but I only have limited leave time available and summer is my peak workload time of the entire year. I imagine they may not restrict me from my office work itself, but they may restrict me from driving. . . and driving is the only way I can get to where I work. My work, for the most part, cannot be done remotely, either, so I'm very concerned about what this means for me. Also, unfortunately, there is nobody else who can step in for me and carry the load for a while.

The pacing lead itself was fine until it wasn't. That is, no gradual lessening of effect. Just one morning it wasn't right any more. Also unfortunate for me that the failing lead is my ventricular lead - the one I depend upon more heavily. They increased the output voltage so that it works, but want me to see the doc to discuss replacement. I'm just hoping that they will allow elective replacement of the device without any challenges from insurance, but I won't know until we schedule it and the doc files for pre-approval. Of course, the doc may know what the insurance companies usually do in these cases, as there may well be established precedent.

Don - Your words of wisdom actually brought a tear to my eyes. I'm especially having trouble with the first case - accepting the things I cannot change. I haven't gotten past that, yet. Not just for the pacemaker - as I do expect that to be resolved in a relatively short time. (e.g. Once it is done, I'll have minimal restrictions after a couple of weeks.) I do have some other rather serious work and life issues that weigh heavily on my shoulders right now, and I'm trying to deal with them.

Where I'm presently stuck is at the start of how I've counseled many prospective valve recipients. I advise them to "Make your plan, then just work your plan. Once your plan is made, only worry about the very next step - not all that follow it." Well, I'm back at square one, trying to get to the point at which I have enough information to make my plan. Planning works well. I'm just not used to being in pre-planning limbo, as I dealt with pre-planning anxiety over my future need for heart surgery when I was first diagnosed over 15 years ago - and I've sort of forgotten what it is like to be there.

 

[dornole]

It's hard when you feel like you just can't catch a break. I think your emotional skills for dealing with this and your other diplomatically-termed "stuff" will return to you, Steve. Levelheadedness seems to be one of your gifts. Prayers that you will get your equilibrium soon and that the various stressors each resolve as peacefully as possible. "Wise you" still has good advice for "distressed you." You're a smart and strong guy.

 

[FredW]

Well Steve, you sure sound like you have enough to worry about. Wish I could offer more than moral support.

I do relate to <quote>I'm just not used to being in pre-planning limbo, as I dealt with pre-planning anxiety over my future need for heart surgery. </quote>. As someone who has project management in his DNA, I know well the discomfort of not having enough information to create a plan.

The good news is that you are smart, aware, and know what the stresses in your life can do to you. You also know, you don't need to sweat the small stuff. While in the waiting room, and dealing with my own reduced capacity, I have put many house projects and other activities on the shelf. Not being healthy and waiting for the other shoe to drop just plain sucks.

My best to you.

 

[Zoltania]

Steve, you're right about the difficulty of being in limbo. Some years ago I had a medical scare which turned out to be nothing but which caused me several weeks of great anxiety while waiting for followup testing. Afterwards, when I told my sister that I was unhappy with myself for having reacted in such a freaked-out way, she very wisely said that the experience didn't say anything about how I would react to real problems, just how I reacted to uncertainty.

 

[epstns]

I've had a chance to think through some of my issues. No final answers yet, but at least some of the early things are starting to become clearer. I'm well used to dealing with medical ambiguity, after spending almost 10 years in the vr.org Waiting Room. I know enough about my various medical issues to realize that if properly managed and treated, none of them are life-threatening. I don't yet know what path any of them will take, or how they will affect my life, but I do know that life will go on -- for a relatively normal length of time. I know we don't live forever, but at 68 years old, I wasn't planning to check out any time soon. It appears that this remains the case.

Part of my anxiety over the pacemaker problems revolves around my work. This is absolutely the most critical busy period of my entire business year. I am the #3 man in a 100-person company, and I'm in charge of all the finance, accounting, admin and IT functions. Our fiscal year ends on June 30, and I have until roughly the end of September to complete the annual inventory, audit, financial statements, bank reporting. . . the whole lot. It is a very ambitious schedule and I was definitely not planning any extended time away from the office until fall - much like each of the past 17 years. I am not one who takes his job lightly, and fear the thought of letting anyone down.

I had a thoroughly rewarding heart-to-heart chat with our company president (my immediate superior) yesterday. I expected his support, but he overwhelmed me with his compassion and concern. He made it quite clear that we will work our way through this, no matter what. Once I am released back to work, I can telecommute some days, and for those days when I need to be on-site, I can probably find friends within the company who could drive me in or home. As long as I can schedule the procedure for a time of the month when I can be out of the office for a few days or a week, it should work.

Also, the president has been through another of the medical issues I'm facing. He was surprisingly forthright in sharing with me his personal experience and advice, which has reduced my anxiety level immensely. I'm not out of the woods yet, but at least I've found a kindred soul who fully understands what I'm going through (and putting myself through, for all of you other control freaks). I'm much calmer now, and will be even more so (I hope) after my Thursday AM conference with my EP about the pacemaker and lead.

Thanks, everyone, for being here for me. You are the greatest!

 

[Debster]

Hang in there Steve!! My mother had a lead break very early on...it actually had a recall on it. Great. A tone went off warning her there was an issue. She actually had another lead put in and the bad one remained capped off in place, Hopefully you can get your battery replaced too-get the whole deal done at once. So sorry you are going through this..

 

[Forrest]

Steve, sorry to hear of your situation. I rarely check in much but am glad that I did so to read your post. You have been a steady rock over the years, a role model if there is such thing in these heart stories, and someone I’ve always been impressed with, your reasoning and compassion...but now it’s your time to take care. I believe you will do well once again. Best wishes!

 

[Catie]

It's very heartening to read what an ally the president is being. I hope his encouragement has brought you a measure of peace.

Also hoping more good news will be on the horizon as you walk things out.

 

[epstns]

Well, folks, I spent all day yesterday at Northwestern Memorial Hospital, first seeing my electrophysiologist for a thorough review and consult. She interviewed me regarding the progression thus far, then she once again interrogated my device and did a complete set of diagnostic tests. Her conclusion mirror's the tech's opinion from last week. For reasons as yet unknown, my ventricular pacing lead has gone "high-resistance." This means that it takes higher voltage to trigger my heart to beat than it did just a short couple of weeks ago. For the moment, my pacemaker has enough capacity to increase its voltage to ensure adequate pacing, BUT since this came on suddenly, we are not at all sure how stable the system will be over say, the next year. (It has one year of remaining battery life.) We do not know, and may never know why the lead has deteriorated, but there are two typical causes. Either the lead wire itself is failing due to injury to the wire or degradation of its construction, or the point at which it attaches to my ventricle has developed enough scar tissue to create electrical resistance between the wire and the muscle. At the moment, it matters not which is the cause because the solution is the same - replace the lead.

I asked the EP whether they would be able to replace my pacemaker at the same time as the wire, to avoid another surgery in just a year, and she said that this will not be a problem, as there is adequate medical necessity to do so. One issue resolved.

I then asked her if my next pacemaker might be any smaller than the current one, which is quite visible under my skin. She sort of gave me a strange look. . . then told me that the device she would really strongly recommend to me is slightly larger. She said that although my current device (Altrua S603) is still being made, there is a newer model with the same/updated electronics but with almost double the battery life/capacity. She is recommending this unit because the single largest risk to the pacemaker patient is infection of the device site. If one can delay the need to replace the device due to battery depletion, one thus reduces the number of times the patient must replace the device and risk infection. I said I wasn't sure, as I'd rather not have a larger lump than the one I have now. I also raised the question as to whether it will really matter to me if I continue to scar my lead attachment point every 5 years or so. She opined that we don't know if the issue is scar tissue, nor do we know if it will happen again as quickly as I age further. Valid points. Also she said that even if it is just a "maybe" that I'd be able to have the benefit of the longer battery life, if I didn't get the larger device, I wouldn't have the chance at all. I left her office very anxious about having an enormous block of pacemaker stuffed under my skin - where I already feel the current device.

This morning, I was able to research the current Boston Scientific product line. I found what I believe to be the device she is recommending, and compared its dimensions to those of my current device. The new device would be just marginally wider, marginally thinner, but about 1/4-inch taller than my current device. Whew! If that is the magnitude of the difference, sign me up. It also helped when my EP told me that if it was her parent who needed a new device, she would "force" them to get the higher-capacity unit, just to reduce the number of times it will need to be replaced over their lifetime. Stress level on this item has returned to normal. . .

After the EP visit, I had to have a chest X-ray, just to ensure that the leads I now have are in the same locations as when they were originally implanted. I guess that's important to them, but to me it was only important that they worked, and worked consistently. No big deal here.

My last stop, literally (4:30 PM) was an echo. I told my EP that I was scheduled for an echo with my cardio on July 11, but she said she would rather have her own lab do one to ensure that my heart function was not going to be an issue in the lead replacement. The tech at Northwestern did one of the most thorough echo's that I can remember ever having. I could tell that she was doing an intensive study of all 4 valves, as well as ascending and descending aorta. I was able to get a copy of the CD file of the exam, but I will have to wait for a copy of the evaluation report to be sent in the mail. I called my cardio's office and told them what is going on with the pacemaker, and canceled my July 11 echo. I kept the July 11 office consult appointment, as I plan to bring my cardio a copy of the complete echo report at that time, and to discuss the events leading to the lead replacement. If I know the date of the replacement, I'll tell him.

So, that's the plan for now. I'm waiting for a call from hospital scheduling to set up the device and lead replacement. The EP said I would be in the hospital over one night, and would have "light" restrictions for one week. Of course there will be the normal "new lead" restrictions regarding how much weight I can lift (increasing from 5 lbs. upward by week), and strong instruction not to raise my left elbow above shoulder-height for about 5 or 6 weeks, but she said that barring any complications, I would be released back to my office job in a week, and would be able to drive after a week (subject to the arm movement restriction). I am not sure how far to the future they need to schedule, as there are 3 doctors needed for this procedure. Given the complexity of the situation (lead removal, new lead, different pacemaker), they will keep a cardiac surgeon in the OR during the procedure. They also have a specific lead-removal specialist who will remove the defective lead, then there will be my EP there to implant the new device. I'm much more confident with this team than I would be at a community hospital with just the local EP. I feel so lucky to have such a world-class medical facility less than half an hour from home.

So there we have it. I have a plan, just not an action date yet. Thanks for all the good wishes and support. I'll keep you posted (will start a new thread when the saga begins).