INFECTED PACER/LEADS

My Dad is 82 yrs old. His pacer (and leads?) have been infected with Staph Areus since 2009 and he has been living on suppressive antibiotic therapy.He and my Mom who is also very ill live with me. My Dad has vascular dementia and won't take his antibiotics as they are prescribed. Its imperative that he take his meds from me because of his memory issues but he refuses. As a result, he has landed 6 times in the hospital with septicemia, one time in full blown septic shock.It's a miracle that he is still alive. Six weeks ago I noticed blood on his shirt and took a look. A large boil had developed over the infected pacer site and was draining.After a week of hospitalization he was sent home with oral Cipro and Rifampin as well as the IV antibiotic Nafcillin.6 weeks later the integrity of the skin is deminishing and you can actually see the exposed pacemaker.
The doctors have been pushing for him to have the whole works pulled out all along and now I fear it's the end of the road. I have done a LOT of research and know how dangerous the surgery is.I would fly with him to Cleveland Clinic if they would even accept his case but he says absolutely NOT. He has dementia but he's not crazy,lol! (That's what he told me).
My Mom if afraid for him to go also and is not encouraging it. In the end, they would defer to me if I pressed in but I just don't know what to do.
I have also spoken with hospice.

SHOULD I STRONGLY ASSERT TO MY DAD THAT THE SURGERY IS THE BEST OPTION??

HE IS 82 YEARS OLD
ORIGINAL LEADS (30 yrs) STILL IN PLACE AND INFECTED
NEWER LEADS INFECTED ALSO
PACER INFECTED WITH STAPH AREUS
HAS CAROTID ARTERIES
3rd DEGREE AV BLOCK
100% PACER DEPENDENT
DEMENTIA
WILL HAVE TO SEPARATE HIM FROM MY MOM FOR DAYS
HE'S AFRAID OF THE SURGERY

Apologize for the lengthy post but I feel desperate :(
Any thoughts on the matter appreciated.

16 Comments

wow, tough one

by Tracey_E - 2011-09-06 05:09:54

Do they understand that if he does not have it removed, he will not survive? If the iv antibiotics were going to work, they would have helped by now. Can you to sit your parents down with the drs and possibly a psychologist that works with dementia patients and make a decision together so it's not all on you? Do the drs feel they can get the infection under control if it's removed this late? If the odds are small, it may not be worth it to put him through the trauma, just a thought.

The surgery is scary but it's come a long way in the last few years and is not considered high risk anymore, esp if you are somewhere such as CC, they are among the best cardiologists in the world with the latest technology. The hard part is clearing up the infection after the removal and keeping his hr up until he can have the pm replaced. If you search lead extraction, you'll find quite a few members here who have had it done. Some because of faulty leads, some because of infection.

Good luck! I'm sorry you're in this position, there are no easy answers.

tough one

by kadibird - 2011-09-06 07:09:40

Thank you Tracey, it is tough.
Tomorrow we see the infectious disease doctor and I will give him the name of the doctor at CC, Dr. Bruce Wilkoff. I realize he is not a surgeon but I guess he can recommend one to us if he even thinks my dad is a good candidate for the surgery. The decision could be taken out of my hands if he doesn't.

Thanks for your input and blessings to you :)

Hi Kadibird...

by Lisarose - 2011-09-06 08:09:33

Wow, this is definitely a tough time for you, we know that one day we may be caring for our parents, but it sure comes fast....

A couple thoughts I have...

Have you been named substitute decision maker? If so, then seek out your medical opinions and while you would have the final say, the doctors can guide you with "best case scenario"

With that said, though, what do you think your Dad and Mom would like, I guess more specifically, your Dad? Often times the elderly have a better handle on options for their mortality than we do... to us it is scary, to them it is nature. Also, is it too late for your Dad to dictate a living will, that is directions he would like followed for his physical health in the event his mental health declines further, this can include any potential surgery choices and or life saving options.

As far as the procedure being dangerous or dificult, I agree with Tracey, science has come a long way... likely the most difficult part would be dealing with the infection after, IV is definitly the way to go with your Dad's dementia.

Good luck and know that ultimately, any choice you make will be the best one you could considering the circumstances....
Take care and keep in touch...
Lisarose

Dad Needs Help

by SMITTY - 2011-09-06 10:09:16

Hi Kadibird,

For starters let me say I am also 82 years old and I'm sure I have some dementia. Don't all 82 years olds have some amount. I can tell you for certain what would happen if I was sick and one of our three boys became assertive about my getting treatment. It would not be enjoyable for all parties.

My opinion is to get your dad to talk to the Dr about what he needs to do, unless this Dr is one of the one saying the surgery is extremely risky. Yes it is serious surgery and more so with his infection, but that does not make it near fatal. Pacemakers and leads are removed routinely without a problem. His infection just compounds a serious problem for him.

As for getting him to go to the Cleveland Heart Clinic, would he be more receptive to just going there for diagnosis and evaluation. It could be different doctors in a world renowned hospital would see his problem from a different point of view and may not think total removal of the pacemaker and all leads is necessary. But he can never know until he lets them take a look.

As for him being pacemaker dependent that can easily be overcome. A pacemaker implanted in a different area of his body they can use a different route for the leads. I read where some people have leads attached to the outer wall of the heart when it is not feasible to put them inside the heart chambers. As for continuously needing a PM an exterior and temp PM can be used during surgery and until a new one can be implanted.

But I think the most important thing is to get your dad to agree for another evaluation without surgery being a foregone conclusion. And the evaluation this time would be by experts the field of pacemakers. Above all try to keep him and your mother from reaching the conclusion that any surgery for him has a high probability of being fatal. Hopefully you or the Dr can convince him there is a possibility surgery will not be required. Anything to get him to let the Dr at CC do an evaluation.

I wish your dad the best,

Smitty

What God Given Gifts ~ ~ ~

by Carolyn65 - 2011-09-06 10:09:36

Smitty, TraceyE and Lisarose, Your experiences and knowledge given to kadibird are tremendous. This is the best responses I have heard for a long time.

kadibird, I pray your Father/Mother will let you use these words of wisdom, go to CC and come back 'new'. This will be a long 'journey', but I think this will be your best options. Your Dr. may help you with this.

Please keep us 'posted'. You are not alone, even tho this seems to be, but we all are thinking of you.

Love,
Carolyn G. in TEXAS ~ May God Bless You ALL ~

RE: God Given Gifts

by kadibird - 2011-09-07 12:09:51

Smitty,Tracey,Lisarose and Carolyn,
I am very thankful to everyone for posting, what a wealth of wisdom and knowledge I am finding here.
It is very encouraging to hear your thoughts and opinions.
I'll know more tomorrow and will keep you posted.
Kadi.
:)

exposed pacer

by kadibird - 2011-09-09 05:09:12

Hey Tracey,
I just wrote a very lengthy post about what's going on. I think I will wait a bit and see if it shows up, otherwise I think I lost it.
The biggest thing to report right now is that the pacer has now a hole over it the size of my thumbnail and I can see the actual metal pacemaker.
My dad is still standing firm and asserting that he does not want ANY surgery.
Waiting for the Infectious Disease Dr. to call me right now.

Please keep us in your thoughts and prayers.

any news?

by Tracey_E - 2011-09-09 11:09:19

Thinking of you!

Hi Kadebird,,,

by Lisarose - 2011-09-10 11:09:30

Well my friend, that hole is truly upping the concern factor, has a doctor seen it, have they advised? I would be (and you likely are...) monitoring your Dad for sepsis, like fever, chills confusion out of the ordinary... Hopefully you will get some information from the Infectious Disease doctor... what about the Cleveland Clinic? Any movement there? Sending healing energy to you and your family, hope you are taking care of yourself though, getting enough sleep, eating, etc., wish I could be more help, but am wishing you strength...
Take care cand keep in touch...
Lisarose

hole above pacer

by kadibird - 2011-09-11 01:09:14

Thank you so much for thinking of me, you don't know how much I appreciate it. Caregiving is a lonely business. :-/

The hole gets a little larger every day. I'm doing wound care twice a day as well as managing his PICCline/IV antibiotics (Levaquin,Nafcillin,Rifampin) twice a day.The infection is "under control" but I watch him closely. He's presented with septic shock before so I know the early signs.
The ID doctor is aware of "the hole" and we see him again on Tuesday.He was supposed to call me on Friday after conferring with the cardiologist but I never heard from him.
As for Cleveland Clinic or ANY surgery, my dad keeps insisting he will have none of it. I just don't know how much he really understands. I decided to show him the exposed pacer with a magnified make-up mirror yesterday. He looked genuinely shocked and said,"they're going to have to do something about that".But then when you tell him WHAT they're going to have to do he says absolutely not.

Any way...He can't live on IV antibiotics forever. Doctor added the two antibiotics that he was supposed to be taking orally to the PICCline regimen (because of his noncompliance) in an attempt to knock out this secondary infection but it's obviously not doing it and the options are running out.
My hope is that when we see the Dr. on Tuesday they will have a plan and will be able to get him on board. If not, my last resort is Hospice and that will be a very sad day for me.

Thanks again for your thoughts and prayers!
I will keep posting as I know anything new.

Photo of PM breakthrough

by kadibird - 2011-09-11 11:09:25

I hope I am not being too graphic but I have posted a picture of the infected pacer breaking through the skin on my Dad'd chest.
I showed it to him this morning.
Still hoping the doctors can make him see the critical nature of the situation.

Again, I apologize if this is gross.

Dear Kadibird, that is not gross at all...

by Lisarose - 2011-09-12 04:09:26

Hello Kadibird, that is defineitlly a pacemaker sticking through!!! (not trying to be funny :) ) How difficult that must be for you to face day to day, watching that wound getting larger, for what it is worth, the site looks very clean, yes it is reddened and has some swelling, and likely you had just cleansed it before the picture, so I see no drainage, but there is no necrosis, the edges of the wound are not meshing together, but they look pink and healthy... the reason I am saying all of this is, that I am a nurse, (not sure if I already mentioned this...), and in my humble but professional opinion, you are doing an amazing job with wound care. Ok, now if you are a medical professional of any sort, this is the part where you say... well duh!!! Regardless, your care is well done and is making a huge difference in your father's health. I am glad to hear that all of the antibiotics have been added to your Dad's pic line coctail, between that and your diligence, you may just be keeping his infection at bay. Yes, he continues to be comprimised, but YOU ARE MAKING A DIFFERENCE! I am so sorry you have to go through all of this, but it sounds, (from your posts), that you would not have it any other way. I hope that the doctor you see tommorrow, (tues), does have a plan, because it sounds as though your Dad can recognize the urgency of his condition, but due to the dementia, cannot tolerate the concept of surgery. If I may add, when you see the doctor, and he asks your Dad questions that may be leaning toward assessing your Dad's mental status and/or his ability to make decisions for himself, don't be afraid to clarify all questions for your Dad, (you likely already do this...) sometimes when info comes across calmly and without as much medical jargon, it feels a little less threatening or pushy to someone with dementia. (sadly, my mom was diagnosed with alzheimer's at age 62).
Please take care, again, make sure you eat and sleep,
and keep in touch.
Lisarose

Lost in space

by kadibird - 2011-09-12 08:09:53

Arrgh!! I am typing on iPad. Touched screen with my hand and lost first message.
Patiently wrote second message,filled in title and spam filter and sent. Lost in space???

Lisarose, all I'm going to say is thank you :)

I will post tomorrow after our appointment, keep sending those good thoughts!

Kadibird
:-)

No worries Kadibird!!!

by Lisarose - 2011-09-12 10:09:34

The very technology that has brought us together, is being a pain right now!!! Your very welcome, we all go through a lot, sometimes those farthest away can be help I will check in the next few days to see how things sent, and... will definitely keep sending you the best thoughts possible!!!!

sad but honest

by aeearep - 2013-10-10 09:10:53

Kadibird,

I hate to add a sad email, but I want to share my direct experience with this. My mother woke up on January 2, 2012 with her pacemaker leads poking out of her skin under her left arm. We called the nurse hotline and they said to "get her to ER at our local hospital." I drove her there, and they admitted her that evening. She was fine otherwise, had all her faculties, and we all thought, "let's just get this taken care of and get her home soon." She was 82. The next morning the 'electrocardio' physician came in to see her at 7am and shared that "this was bad." He said that because there was an infection present, they would have to extract her pacemaker and leads completely and implant a whole new device. She had been pacemaker dependent (and had that device) since 2000. So, that pacemaker was in there for 12 years. He told her how dangerous the surgery was, but said that she was an otherwise healthy 82 year old. He spent all that week gathering the 3 teams needed for that serious surgery. They have to have the electro cardio team to extract the device, the cardio (open heart) team to be ready to crack the patient open if there is bleeding, etc., and the infection team of doctors. They admitted her Monday, and her surgery was Friday. We waited around all week for her surgery to take place. We waited for the doctor to show up and explain to us in person what was going on as well, but he never did....he called on the phone. My brother talked to him and he seemed totally confident that my mom would do well. He said that the option to put her on antibiotics for the rest of her life would be horrible....and she could develop septsis and/or die of infection if the pacemaker was not taken out. That Wednesday, my mom turned 83, so we celebrated her birthday in the hospital. I was terribly nervous, as her regular cardiologist visited and said 'how serious' the surgery was, and that he was surprised that I was so 'optimistic'.....I asked him what we should do, and "what would he do if it was his mom?"....He didn't really know, and said that "you have to weigh which option would be the riskiest. Cut to Friday morning. I was nervous beyond. The surgeon came in and talked to my mom and brother and I before wheeling her to surgery. She had decided to go through with the surgery, but I don't think she really thought it would end her life. She made one comment that "this could be curtains for me." She said "I trust the doctors to know what they are doing." I was petrified. I had a hopeless feeling that whole week. We had just lost my dad 9 months before. They wheeled her into surgery after we all prayed by her bedside, kissed her and said "we'll see you later"....and went to have lunch. I was so scared. We 3 sat waiting for her to be out of surgery, when a nurse came up to us and said "the doctor wants to have you come up to the 'quiet room'....and my blood went cold. I pannicked! We got on the elevator, got off at the top floor where CCU is (Cardiac Care Unit) and Intensive Care......and the nurse was waiting for us. She said "there were complications" and I am sure my whole head lost all of it's blood, causing me to be sheet white. We went into the "quiet room" and my brother dropped us to the floor and put his arms around us and began to pray. The doctor came in and broke the sad news that my mom did not make it through the surgery. They spent alot of time clearing the infection up by the battery by her clavical, then took the top lead out of her upper heart chamber and through the vena cava. When they 2nd lead was being extracted, they saw a spot on the ecocardiogram where she was bleeding. THE LEAD HAD GROWN INTO THE WALL OF THE VENA CAVA, AND HER VEIN WAS LIKE TISSUE PAPER. IT JUST GAVE WAY!!!!!!!!! They did all they could to stop the bleeding. They had to open her chest (open heart surgery) and try to stop the bleeding. They did a mainline, tried to clamp the vena cava, but there was nothing substantial to hold the vein shut. It was so fragile. My mom's general practitioner doctor said that "that is the next frontier of medicine....to be able to know the state of the veins and arteries before the surgeons go in." MY HEART WILL ALWAYS BE BROKEN!!!!!!!!!!! IT TRAUMATIZED ME SO BADLY....AND STILL DOES. I wanted to run down the hallway as they wheeled her on the bed to surgery and pull her back and say "NO!, you are not taking her!" I had a premonition that this would happen. Sorry to share such sad news, but this is one thing that can happen with this surgery. She had one of the best doctors too. He was educated at Cedars Sianai and UCLA in California. He knew what he was doing. Sadly, the body gives out one day. :( My best to you. My heart goes out to you and everyone who is caring for a loved one. I was blessed to be able to do that for my folks too. They didn't need to be in homes, or have full care.....but just to have light care, and be driven around. I loved my folks so much! I miss them both terribly. J

Reply

by kadibird - 2013-10-12 10:10:07

Did you get my reply J, I didn't see it :/

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