Scared to death...

When they put in my PM it the voltage needed was .7v. Then about 3 weeks later I felt LOUSY. My heart rate was very low so they up my set point from 65 to 70 and my voltage need had increased to 1.2v (they said not unusual). Now in less than 3 weeks...again felt LOUSY..heart rate low...now my voltage need was 3.3. The rep from Boston Scientific and the cardiologist admitted me to open me back up and see if the wires needed moving. Before they did that they took x-rays and came back with the interrogation machine and did all sorts of testing (that really made me feel miserable) and determined the PM was working fine but I wasn't capturing. SO---they upped my voltage to 5v. At that rate...even if it held...the battery would have to be replaced in 4 years. They have no idea what the problem is. Their theory is that it has been only 7 weeks and here may still be some inflammation at the tip of the implant where it touches the heart muscle. They want to watch it and give it another 5 weeks or so to calm down. They gave me an Latitude machine to put by my bed and I'll see the rep once a week.

I'm TERRIFIED! They didn't seem to have any alternative options if it wasn't inflammation. So, what happens? They take it out and I just sit and wait to die?????? When I asked them these questions they kept saying they felt sure it was inflammation but never answered me.

I'm just beside myself... Thanks for letting me vent.

10 Comments

Inflammation

by golden_snitch - 2013-08-10 03:08:07

Hi Verne!

That sounds a lot like inflammation, and since the implant wasn't that long ago, I'd give it some more time to heal. If it doesn't get any better, your doctor will probably move the leads and see, if they do better in a different spot. They will for sure not take the pacemaker out and leave you without one. Not sure, but I think there are different types of leads, not only relating to how to are attached to the heart muscle (passive fixation vs. active fixation), but also the material and whether they are steroid-eluting or not. So, maybe your doctor will use a different lead model.

In the beginning you usually program the voltage much higher than the threshold because the threshold needs some time to stabilize (around 8 weeks). There often is an acute rise of the threshold. So, to be on the very safe side, you program a high output.

"Acute Pacing Outputs
Because the extent of the acute rise in pacing thresholds may be difficult to predict, it is better to program high pacing outputs at implant and during the first 6 to 24 weeks after implant. A greater safety margin may be desired in patients who are pacemaker dependent. Typically, greater safety margins are also desired in ventricular leads rather than atrial leads. Steroid-eluting leads generally result in blunting of the acute rise in threshold, which may allow for lower pacing outputs early after implant." (http://www.rjmatthewsmd.com/Definitions/permanent_pacing.htm)

Hope this helps a bit to calm you down.

Best wishes
Inga

Don't worry too much

by LuCas - 2013-08-10 08:08:12

Dear Verne8,
Our wonderful friend Inga explained the situation very well for you. I've had my PM implanted just 7 weeks ago and I just don't feel better because of the base heart disease that is being treated. I have the left atrium very enlarged due to a restrictive myocardiopathy.
My heart was very slow during the day and I was given a PM (yes, pm was a great gift). I'm also feeling tired and doctors still don't know the reason why. But some other factors also contribute to that situation: my blood pressure is very low and I feel exhausted in hot weather.
You didn't tell us why you've had to receive a PM, Anyway, considering your very problem, you should allow more time to see if the problem you're facing is inflammation caused by leads or any other cause. I've read (and Inga is right) that doctors set some PM to 0.3V in the beginning and they have to ajust to a high voltage because inflammation in the lead location (which is considered normal). In that case, inflammation should not be considered in the sense of disease, but it your heart tissue that was pierced and it is now being healed. After that time, a very small scar tissue should be formed around the just implanted lead and after that, the cardiologists set the PM to a low voltage again.

One thing I learned with an angel: we should never suffer in advance from things that are not happening.

So, don't worry in advance about death. Many of us will never die of heart disease. Death may come at the tip of toothpick if you don't know. Many other diseases can kill you in two days and that is not your case or you woun't be writing to us. So, please, relax.


In order to be calm, you should know exactly what your problem is. Understand your problem and learn what you can and cannot do. How can you help yourself?
Let us know what your problem is and there are options yes. Doctors can ajust the voltage, your body will be better, you can change lead position. Come on, you are not at the end of the line. There are options.

Well, in my case, I have a wonderfull cardiologist in Brazil that has explained the disease to me in every tiny detail. We have also discussed when I am going to die. Even suffering from an important heart disease, my time is not now, if I take the proper precausions. However I will surely live until the end of my life with lots of ups and downs in my health.
PM is not an icecream, but it is also not a demon. On the contrary, it is a guardian angel.
If you keep on scared to death, come talk to us and send me a message. I am open to talk about anything, any worry, because heart diseases and pm were the two links that brought us together.
I wish you good luck.
Lucio
(Brazil)

Grateful Heart

by verne8 - 2013-08-10 08:08:26

Hi!
I remember your kind advice when I first started this journey. Comforting to "see" you again.

Unfortunately...I am in WY. There isn't any high praise for the doctors in surrounding states and larger cities so my "second opinion" would probably have to come from the Cleveland Clinic and I have NO idea how I'd accomplish that one.

But for now...I am taking it one day at a time. Thank you for stopping by and taking the time to share some encouragement with me.

Communication

by Grateful Heart - 2013-08-10 08:08:49

Some Doctors, just like all walks of life, do not communicate very well. They are probably THINKING, let's take it a step at a time. But they should be TELLING you that and reassuring you they will not leave you in the lurch.

Your PM is safe where it is, they just have some testing and problem solving to do. Many some other adjustments. Don't worry about the voltage settings, they will be set at whatever you need.

I have had Doctors that don't communicate. Key word there is had.

You'll be ok Verne. If you trust your Doctors, stay with them, they will figure it out. If not, go for a 2nd opinion.

Grateful Heart

Confusing...

by verne8 - 2013-08-10 10:08:18

Even being an RN, so much of what they are saying is way over my head. It doesn't help that they are talking to me while they are messing with my settings...to do tests...that make me feel AWFUL!!!!!!!!!!!!

Thanks, GH...I value your support.

Hi Verne

by Grateful Heart - 2013-08-10 10:08:49

You'll be ok. Just make sure your Docs talk to you and not around you. It will help to ease your mind if you are part of the process.

Take care,

Grateful Heart

Verne8

by lubro - 2013-08-10 10:08:57

hi... just want to add a little here... It is quite normal to be very scared at this time. Suddenly, your whole world has changed...and anyone who's not afraid when this happens is either crazy or not telling the truth..that being said, I think the advice and explanations given here are good advice. Just try to not be so hard on yourself...Being scared is ok...give it some time, but just monitor what happens as you go along... I'm kinda a newbie here myself... I was scared, confused, hurting, doubting, all those strange feelings surfaced...however, I made it thru, and after 7 months with the PM, I hardly even notice that I have the little guy in there. Give yourself time to heal both physically and mentally...I personally think the psychological part is harder to deal with than the physical...so, that being said, I just want to say welcome to the club...keep us posted on your progress, and know that you are not alone in this...

Lou

ps...hi Lucio...haven.t seen you around lately...

Welcome

by kmom - 2013-08-10 11:08:41

Just wanted to say Welcome to the club. There are lots of people here with a wealth of information. Hope you get everything worked out and feeling better again soon. keep us posted.

You are so wonderful

by verne8 - 2013-08-10 11:08:53

To you both...

Oh...I've been around just on a different "section" of this site (don't know what else to call it).

Let's see...I'm a 64 yr old female. I had complete heart block. They did a cardiac cath at the same time as they put in the PM. I have the heart of a 30 year old..vessels are almost clear and I have even wide veins for a woman.

I had an acute attack of "almost" passing out repeatedly. And ambulance was called and my atrium would beat but the signal would not reach the ventricles, at times, for 4-5 seconds.

I am allergic to the dye they use to do a heart cath so I had to receive Solu-medrol - a huge steroid---that through my usually near normal blood sugar through the roof for several weeks as well as my white count (16,000). I developed "drainage" (the dr was very careful to point out to me that it wasn't "exudate" because that infers infection) at the site. It opened up about 2 weeks post and the first time they expressed out about 1/3- 1/2 cup of this drainage that looked exactly like betadine. There was no smell, no redness, no increased temperature...zip. They seemed baffled as to what it was but they clearly seemed to know what it wasn't...an infection. The tiny hole that had opened sealed back over and then re-opened about 2 weeks later. Again...the same thing but not quite as much. After that the tiny pin hole remained open and every night after my shower it would start to leak and I'd have to gently express out what was there. Over the course of about 8 days of so it became less and less and less until it stopped and, finally, the pin hole sealed. There is still palpable fluid around the PM.

My white count is now 6700 with no shifts in my differential. My temperature is normal and the site...other than swollen...also looks normal---no redness etc. All of my other blood work has been text book normal and the affects of the Solu-medrol seems to have left.

Onward...Perhaps my "Title" was misleading and for that I apologize...it was not intentional. You see, I suffer from SEVERE panic disorder (family heritage). And my disorder had been almost in total remission for nearly 5 years (after nearly 35 years of SUFFERING with it). This has brought it back with a vengeance. So, to put all of that in a title line vs "Scared to Death" was a bit hard. Actually, I am a follower of the Lord Jesus Christ and my life is in His hands. If I live...I live to Him. If I die...so be it. We shall all die. I have seen His miraculous hand in this whole scenario and that has helped me tremendously. Unfortunately, just as diabetes is a (to a degree) chemical imbalance in the body, panic disorder, in the form my family and I deal with, is due to brain chemicals being out of proportion as well. We've tried all the meds...we can't tolerate them. Ok...enough about that...Just trying to give you all a better picture of what is going on here.

I live in a relatively small town in the US (60,000) but, oddly, we have really good cardiologists. Worlds' best?? NO! But good... So, when they kept dancing around my question of what happens in 5-7 weeks if this doesn't resolve, it really did send my panic into overdrive because what they didn't say sounded a whole lot like...NO HOPE. Nothing further can be done...

SO---reading just the comments from you both has given me HOPE and with that I can walk another day. I believe God sent you both and I could not possibly be more thankful to Him or to you.

I do hope to hear from you some more. This site is something of a life line to me. I had help on the other "section" I was on when I first had the implant but then that all seemed to dry up and I was at a loss what to do from there.

I guess I need to learn to navigate around here better.


Bless you and thank you again..

Over our heads

by Grateful Heart - 2013-08-15 10:08:34

Yes, sometimes out of the park....LOL.

Sometimes I will write some questions down and bring it so I don't forget something important that I want to ask.

I find if I ask about something I don't understand, the Docs I have now are usually very good about explaining it to me.

Testing: When I have my device tested, I feel it too. You could ask them to talk to you and explain it after the test because it is uncomfortable.

They'll get it sorted out for you.

Grateful Heart

You know you're wired when...

You have a $50,000 chest.

Member Quotes

The pacer systems are really very reliable. The main problem is the incompetent programming of them. If yours is working well for you, get on with life and enjoy it. You probably are more at risk of problems with a valve job than the pacer.