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Possible Pacemaker Malfuntion?


AJVDK
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Hello All,

Well I went to the doctor on Friday. I am still having areally hard time, but have found a new way of dealing with it. I am going to therapy, talking more about how I feel, and reading lot about dealing with coping with a illness. I found that even when I am really down, I can stay postive and get thought it and keep my head up, and still feel good about myself. Its been hard, but I keep trying to stay poistive.

So let me get back to my appointment on Friday. I was talking to my doctor and explaining how, I still think there got to be more going on, then POTS, and that I am worried. I bought with me all my medical records, which the ones from Mayo just came early that day in the mail. I had a set of records but it never has the lab work, and test results like ECG, EKGS, Ecko's and so on. (Working on disablity stuff)

When I started looking at them I found a ECG form last May ( Last time I went to Mayo) that is said on it:

Final impressions: Episodes of possible pacemake malfunction were see thoughout the recording. The heart rate varied from 69-144 bpm. Rare ventricual pacing was noted. Rare single VPC'S were seen, Frequent SVpc's occurred singly and bigeminy. Occasional paired SVPC's were noted. Broef episodes SVT were noted and totalled eight. The lonest run of SVT was 5 beats. The maximum SVT rate was 133 BPM. S-T segment analysis was not done due to pacemaker. The patient recorded "Dizzy, shortness of breat". The ECG strip showed Atrial pacing with intermittent junctional rtythem and possible pacemaker malfuction. Rate 80 BPM. Drop in systolic Blood pressure or systolic reading that were below 80 mm occurred on 7 occasions. These ECG strips showed atrial pacing, Rates varying from 69 to 73 BPM. With Occasional possible pacemaker Malfution seen.

So my doctor looked it over, and on Monday at 9:00 I am going in for a holter to see what going on. I am hoping it will so whats going on. I keep telling everyone I have felt so much worse since the Pacer was placed then before. But after going to Cleveland I thought it was just because I had POTs, anf they said the ablations could had been what is causing me to feel worse. In Cleveland the never looked at my pacer, they just did the TTT, Blood work, and the Blood Test where they look to see how your blood flows in your heart, and how fast though your body, ( Sorry can't think of the name of the test) .

So now I was thinking what if it the Pacemaker? I would be a great thing if it is, as it would be a easy fix. Just replace it. I don't want to get my hopes up, but uptill I had it placed, I was playing hockey, working going all the tile, was passingout, and my heart would race but I could handle it. If I could go bsck to that, WOW I would love it. I would love to be able to go back to work, and not have to fight SSDI. I no it's a long shot but it would be nice.

Have any of you ever hear of Pacemaker Malfnction? We please keep it in your thoughts, I am just hoping for somthing to turn this around, but also I need to stay grounded and realize this may just be my life, and if it is. Its ok. I have learned to be ok with who I am now. Plus I have learned alot about myself, and my son, now that I am home all the time. I guess what ever is ment to happen will.

Thought I would drop this line and at least let you all know whats going on.

Amy

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Amy, There have been cases of pacer malfunction. However, as a fellow pacer person, I assume that you have gone for regular pacer checkups since you got the device. I go every 3 months. I would also question whether you might feel better if you got your junction node ablated. I got a lot of junctional tachycardia which went away with the AV node ablation. I would also wonder why the Mayo specialist did not mention any problem. Are you certain you have the EKG report belonging to you and not someone else?

Pacemakers have also been known to have recalls. You can check with the company by providing them with your model and leads serial numbers.

I will keep my fingers crossed! Hugs of support to you.

Lois

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Amy, There have been cases of pacer malfunction. However, as a fellow pacer person, I assume that you have gone for regular pacer checkups since you got the device. I go every 3 months. I would also question whether you might feel better if you got your junction node ablated. I got a lot of junctional tachycardia which went away with the AV node ablation. I would also wonder why the Mayo specialist did not mention any problem. Are you certain you have the EKG report belonging to you and not someone else?

Pacemakers have also been known to have recalls. You can check with the company by providing them with your model and leads serial numbers.

I will keep my fingers crossed! Hugs of support to you.

Lois

Lois,

I have worte a letter to the macemaker company (St. Jude) to see if there are any recalls, or any "saftey call", but I just sent it out. As for having my pacemaker checked on a reg. bases it doesn't happen the way it should. Its a long story, but the stort of it is there was some problems when it was put it. I never felt good after the fact, so my Family doctor, sent me me for a 2nd optiion to Mayo, then form there for a 3rd option at Uof Iowa, Where they checked the pacer, tried to make ajustments, but there was no follow up there, untill a few weeks ago where, all the did was turn ithe rate done to check it then turn it back up to 70. It was never run though or checked. It only took about about 5 min for them to check ito due what they wanted and the perosn that checked said it wasn't her job, she was just a rn, and the pacemaker sp. was over at the va. So I dod think it was a good test. When I was clevelnad during my TTT the showed PAC's, PVS, SVT, so they added Metotprol hoping that would help, but they never check my pacer. After I went to these other doctors, and came back to the place that I had been they didn't want to listen to the findings. So right now I have no one checking my pacemaker. my family doctor is trying to find a cadio doctor for me to see that will take over my case. As for now my family doctro calls cleveland after my vists and consluts with them on my POTs treatment, but I am stuck right now on the pacmaker. Thans why my family doctor is having my do the 24- hour montier to see what happens, as for the ECG not being mine I am not sure how it could not be as when I had chest pain, of dizzynice they where my note attched to the paper work. you know when you carry that sheet of paper and say when you have feelings, when you eat, when you sleep that hole thing it was there.

As for the AV node I have had 2 abltions and worry about anymore. After the frist one I started to have slow heart rates along with the fast, then after the second on they had to place the placer as they said my herat rate dropped to low. So I woory about anymore. But I guess I alread have the pacer now.

Did it really make you feel alot after the av node was fully ablated?

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I had my sinus node ablated back in 1996 before POTS was a syndrome doctors were aware of. That ablation gave me bad bradycardia, necessitating a pacemaker. Over the next few years, I became increasingly short of breath and felt these very strange heart beats. It turned out I had junctional tachycardia. After another EP study and a few weeks of thought, I decided to get my AV node ablated in 1998. Now I am pacer dependent; but I do feel better in that I know longer get junctional tachycardia.

I get my pacer checked every 3 months--interrogated by my general cardiologist. From the printout, he can tell how the pacer is functioning--number of pvcs, pacs, bigeminies, etc.

Wish you luck as you explore what's up with your pacemaker.

Lois

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Boy, it's really sad seeing the NEGLECT in following your pacemaker. I can NOT imagine being in your shoes and some doctors not getting on the horn to GET YOU SEEN.

I am not sure I followed your story completely but hope you get the care you deserve SOON.

Do keep us posted.

Good luck.

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Today, I had my pacer checked by the technician at the hospital to see whether the radiation was impacting "frying the leads." Fortunately, all was ok. It just so happened that the technical had previously been a St. Jude representative.

He indicated that (1) your doctor should contact St. Jude via telephone to see about "advisories." You can look them up on St. Jude's website. If there is any question of a malfunction, St. Jude will send a technical representative to you.

He didn't think there was much point to getting a holter monitor as that will only check the functioning for a 24 hour period. He indicated that your pacer provides statistics over a longer period. Moreover, the pacer can be programmed to capture data for a specific 24 hour or so time period.

He said you need to be sure that your pacemaker is working, that the service by your doctors is responsible, and that nothing falls through the cracks. Since you are not pacer dependent, there is not any real danger though you may feel uncomfortable.

The numbers that you provided sound like they were taken from your pacemaker.

If need be, I would call directly the doctor that got those initial readings and express your concerns. You should have these answers. They are your rights.

Lois

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hi amy -

i'm sorry for all the run around you've been getting & agree that - while easier said than done - you need to get some clarity on things, better follow-up, and more. i hope you get some answers soon...

keep on keepin on,

B) melissa

p.s. to lois - i'm so glad that the radiation hasn't caused trouble with your leads. i'm sure that was/is a relief. congrats :D

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Melissa:

Thanks for your kind words. I am still not out of the woods. I had my pacemaker moved into my abdomen. The doctor used "connector" cords to extend the original leads from their original location (above my breast). They wanted to avoid adding a complete new set of leads that would go the other side of my abdomen because the chance of blood clots, infections, etc.

I have excellent oncological and cardiac care. The lst day of radiation the observing room was filled with the radiation oncologist, my cardiologist, the physicist, a slew of nurses and my husband.

In the treatment room were the infamous "paddles." Outside there was a gurney and temporary pacemaker ready in case the pacer completely fried. Fortunately, all went well.

Each week the hospital pacer technician checks the impedance of the leads to be sure they are not deteriorating. Each week I see my cardiologist who does a full pacer interrogation.

I am grateful for all the kindness the hospital staf are affording me.

When I had the pacer moved, I stayed overnight at another hospital--the one where VP Cheney goes for his cardia care. Obviously, he gets better care. The next afternoon, nurse nasty said I need to get up and walk around. I stood up and fainted into the bed. Later on I had a bolus of IV fluid (quick downloading). I tried walking a few hours later and made it about 12 feet. I could have stayed over but I wasn't exactly impressed with the nursing care. When my husband went to tell nurse nasty that I was leaving she asked if I was going to walk to the parking lot or did I need a wheelchair. I wondered where she got her training.

Lois

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