Pacemaker Infection

Has anybody here had one? How did you feel? How did they find out? What did they do about it? How are you now?

I haven't been feeling well the last 2+ weeks and if it was the flu I thought I should be better by now. So help me out with your experiences.

Thank you, FG


11 Comments

See the doc

by Lavender - 2023-06-06 17:43:01

Why ask here, buddy, when a dr can confirm or deny the existence of an infection?

Go get checked instead of trying to diagnose yourself. 🤪

ditto Lavender

by Gemita - 2023-06-06 19:42:21

FG, I know you have just been on a cruise and I was hoping things might have been better by now.  Did you manage to speak to the on board doctors?  Like Lavender says, I would see your general doctor and keep pushing until you get some satisfactory answers.  You know your body best after all.

They checked me out for a pacemaker infection in June 2022 after complaining of persistent intermittent night sweats and chills.    My EP asked my GP to do a number of blood checks and when they failed to identify a problem, he ordered a PET Scan.  Pacemaker infection/Sepsis were ruled out since there was no evidence of a metabolically active infective process.  

Night sweats, chills, brain fog, headaches and fatigue have continued intermittently to the present day and can be debilitating.  I am even due to be seen in the memory clinic, that is how bad things have got.  They are now saying that my symptoms are likely due to the long term effects of having had Covid and I think they are probably right. 

Would you care to share with us FG what your symptoms are and what investigations have so far been done?  A potential pacemaker infection has to be taken really seriously.  I hope they can identify the source of your illness and give some reassurance.  If you feel you have an infection, with or without evidence (like a high temperature, chills, extreme fatigue), you must speak up.  I hope for some better news soon and please take care.

Symptoms

by FG - 2023-06-07 09:13:06

General feeling of low energy, don't really want to do anything, here I am on a cruise and I want to sit on the balcony or take a nap all the time - not the typical me. EP had extreme difficulty putting in the LBB 3830 lead and both the EP and the PM tech said it took him "5 lead insertions until he finally got LBB  capture..." I think he misled me about how much experience he had had with this new technique. I have read about it and what they do with unsatisfactory 3830 leads is just pull them out instead of unscrewing them because easier/faster and lead is small 4.1 F so minimal damage. But then a new one is needed because the coils at the end of the lead are filled with your heart tissue (what a thought). Well each time you pass another lead frustration builds and the procedure gets longer (was an hour) and the chance for infection increases. I have very similiar symptoms to what you just described Gemita and I just hope to God its not PM infection but the last few days I've had low grade fevef 99-100.2 and cold hands and chills with nightly sweats some drenching. I did have sweats before the PM from sleep apnea and my CPAP machine had made it better, not entirely eliminated, but it is worse again now. 

I have low grade fever, mild chills esp. getting in bed, mild fatigue - actually flu like symptoms with muscle aches around shoulders and neck so I thought it was the flu and still hope it is but seems like its taking too long to go away, now at about 3 weeks. There is also a new pain in my left neck I never had before. Time since PM insertion is 10 weeks tomorrow. I had no symptoms like this at all for the first 6-7 weeks.

I thought about COVID too but I have been vaxxed 3 times - does that mean anything? 

Anyway, I am going in for blood drawing this morning. 

you need those bloods done

by Gemita - 2023-06-07 10:44:54

FG you say you had some sweats before the PM from sleep apnea so that tells me that something was going on before your implant surgery. We need to wait for those blood test results which I hope will give them some clues and then you need follow up to rule out more than just infection.  

I certainly feel to be safe you should be checked for a pacemaker infection but these sweats, slightly raised temperature can be seen with both viral and bacterial infections, some medications, thyroid, autoimmune disease, hormonal problems and so on, so you really need further assessment.  Will you please let us know what your bloods reveal? 

Please tell your doctors as soon as possible about the new left side neck pain and let them decide what further investigations need doing?

FG please try not to worry.  You are taking steps now to help yourself and this is all you can do.  Keep well hydrated and stay positive.  You have been through so much stress and this won't be helping your symptoms.  I hope for better news

Thank you

by FG - 2023-06-07 12:07:37

Thank you. I have always been so healthy never sick never had to pay it much mind and now all this is just new for me.  Yes worry and stress. "Stewing without doing" like the minister at church said the other week. Because I want to be able to do something! 

Blood was just drawn. When results out will post. Thank you all. 

Circulating Viruses

by Penguin - 2023-06-08 07:01:13

Hi FG, 

There are lots of viruses circulating that mimic Covid and flu type symptoms. Cruise ships are likely places to catch one. People are reporting continually negative Covid tests, but very familiar Covid type symptoms with symptoms lingering for weeks.  We've all been offered triple vaccinations in the UK but the bugs are still affecting people. 

Don't know what the bugs / viruses are named, but worth bearing in mind.

The fever is worth checking out though. I hope you get your results quickly and that they put your mind at rest. 

 

Pocket Pain

by Stache - 2023-06-09 09:03:32

My pocket stitches exploded 30 days after my pacer was inserted.  I contacted my doctor as pain was bad and sent JPG pictures of the area.  The next morning my pocket area exploded with green puss.  I was remitted to the hospital pumped full of medications by IV and my pacer removed.  I have a dual chamber pacer and was connected to a temp external pacer while surgery was performed to clean my pocket and cut out the bad tissue.  My pacer was reinserted and stitched back up.  This took a long time to heal as so much tissue had been removed.  Infection is a serious problem, mine was a wake-up call for the department.

Stache

by FG - 2023-06-09 10:18:38

So sorry for your difficulty. I hope you are doing fine now.

Yes my pocket seems OK the PCP saw it yesterday and said it looked fine. I think my problem may be at the wire attachment region. They had difficulty getting LBB capture on me and had to stick 5 times. I think the excessive manipulation is what did it.

Labs: The CBC/white count and SED rate was normal. One set of blood cultures still pending. 

Still running non stop low grade fever 99.5 - 100.2 (37.5 - 38).

Lab results

by FG - 2023-06-11 15:03:45

C reactive protein and SED rate both markedly elevated.

Still running fever, general malaise, no energy, sleep whenever possible.

Blood cultures pending.

Lab Results

by Gemita - 2023-06-11 17:09:37

FG, you might like to start a new post?  CRP and ESR are important markers for infection and since both are markedly elevated, I am glad they are taking this further.  I do hope they won't stop searching until they identify the problem.  My husband was recently investigated for Sepsis of Urinary source.  He was very poorly and was kept in hospital for 5 days on IV antibiotics.  He also needed a phosphate infusion.  He lost complete muscle strength because of his illness.

Rest as much as you can to give yourself the best possible chance of making a full recovery.  I hope the blood cultures will be through soon.  Please keep up posted xx

lab results

by new to pace.... - 2023-06-11 17:15:58

I was  told by my Diagnostic Dr. that one of the reason that  for me at least  my C-reative Protein was high.  That it is the way my body processes food.  To take  supplement of fish oil to reduce the levels.  I looked on line it said a side effect was hi A-fib episodes.  Since i already have those on my own did not want more.  Now i take Agal Oil  whose  side effect is high cholesterol levels both good and bad.  Of course you would need to speak your  doctor to make sure either one does  not clash with your regular prescribed prescriptions.  Do make sure you avoid processed food which also  can cause the rate to be high.

High Sed Rate  generally means you have an infection in your body.

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I, too, am feeling tons better since my implant.