My Pacemaker Journey 😢

Aneeda72

Well-known Member
I had wanted a pacemaker for at least ten years. This year my symptoms worsen. After determining it was not a “pump” issue, but a rhythm issue, I asked my rhythm cardiologist to do a 30 day EKG. 🙄. He agreed. The EKG showed I now needed a pacemaker for my bradycardia. In addition, with a pacemaker in place if my SVT got out of hand I would be able to receive treatment for it. My lowest recorded heart beat was 36, my highest 210.

July 20, 2022 was the big day. It is an in and out procedure. An IV is put in each arm. You must be completely undressed, which I hate. I had seen the doctors PA for my test results in the office, and not the doctor. I saw the doctor, in the hospital before the procedure, signed all the paperwork, and off I went.

You are not given any meds to relax you before going into the procedure room, once in the room you endure all the setting up, (which I hate); then are put out, the procedure is done, takes about an hour, back to your room, another couple of hours, and off to home.

My pacemaker was placed in my left side, a little higher than my armpit, and very close to it. I got a two lead pacemaker. I had hoped for a lead less one, but, nope. No pain meds are given, take Tylenol. There is bruising, but not bad.

A strap is placed around your chest and your arm is immobile against your chest. You cannot move your arm for three days, or shower, or do much of anything. After three days, you can take the strap off during the day, but it must be worn for 4 weeks at night. You cannot lift your arm over your head for four weeks or use the arm much. You cannot lift more than a couple pounds with your other arm. 😳. I, of course, am left handed.

Microwave is not an issue. But you cannot use a cell phone on the side with the pacemaker, you know, the side I hear better on 😳. An iPad must be kept a certain distance away, do not linger in doorways with those electronic are you stealing stuff devices, etc.

But worth it cause I feel, eventually great. Better than I have in decades. Breathing problems pretty much disappear, chest pain fades to almost nothing, I have an abundance of energy. No more afternoon naps. No more extreme fatigue. I get the one week after surgery check up. I am doing better than expected in the improvement department.

My pacemaker is set to 60 beats per minute, and my resting heart rate become 62 instead of 42. Instead of my usual 85 beats per minutes where I can barely drag myself around for one mile; I am back to walking 4 miles with a heart beat 100-110. So great, so nice.

Until it wasn’t.

It all changed at midnight, three weeks four days later. All the surgical tape was off, the wound looked good, but still a bit swollen, especially in one area, but not badly; and I meant to point it out on my next and last follow up. I got up to potty, and the especially swollen area burst open.

😱😢🤬
 

It takes a lot to freak me out, but I freaked. The wound looks gigantic (it’s not-actually a bit smaller than a dime. Ok, later I realize half the size of a dime. But deep, very very deep, and oozing blood and what looks like thin pus, and I, I am freaked. I call ask a nurse cause I hate to call a doctor at midnight.

The ask a nurse nurse reads the procedure to me. If a pacemaker is infected you must start treatment in four hours in order to save the pacemaker. Call the doctor she says. I do. If you can not get the doctor, go to the ER. But I get the doctor’s PA. Who turns out to be really stupid, IMO. The service puts me through to the on-call PA. Who says that I woke him up. Hmm, I could not care less cause, you know, he’s on call. He should be awake. And I am freaked out.

He asked me the problem. I explain. He asked did I go to my checked up-yup. He says then it’s not infected. Call the office in a couple days, during business hours. Hmm. Ok. Still extremely nervous, but ok. I go back to bed. Wake up in a couple hours, check the wound. The huge, not gigantic, half the size of a dime wound is still oozing blood but no longer oozing thin pus. Instead there are a couple of thick string like bands of what I think is pus oozing out. And ask a nurse said I have 4 hours for treatment.

OMG I am past four hours. Ok, panic time.

Husband works from home. Got to go to the ER, NOW! Can I finish work, he asks. Yup. Cause by the time I dress, his shift will be over, and he is already dressed, and if he has to leave work early he will be 🤬.

We reach the ER at 6am. Two hours past the saving the pacemaker if it is infected time period mentioned by the ask a nurse. Husband drops me off, goes home to sleep. I see the doctor, who thinks it’s infected, she takes a culture, I call my son to get me and take me home. The ER doctor prescribes an antibiotic. I call the cardiologist for an appointment and the receptionist says she will forward the information. Son picks me and on the way out of the parking lot, doctor calls and they will see me in an hour.

Doctors office is at the hospital so I go up and wait. Son waits in his car since he can work from there. PA comes in. Cleans the wound. Then goes to get the doctor, who does not realize he just operated on me 3 weeks ago. Lovely. PA reminds him who I am and what he did. Doctor looks at the wound. Tells his PA he doesn’t need to clean it again or draw blood. Procedure is clean the wound 3 times, draw blood cultures-not done.

Doctor orders an additional antibiotic.

Son takes me home after getting my meds. I take the meds. Wound looks worst. Culture comes back right away. ER doctor is correct. Staph infection. Ok, I don’t exactly go crazy, but very close. The shaking stops eventually. But I want to rage, really I do. I am terrified.

A staph infection in a pacemaker incision. A pacemaker with two leads directly into my heart. A staph infection when I have two artificial hips, and my orthopedic surgeon makes me take an antibiotic before I get my teeth cleaned. Cause you cannot risk and infection with those hips. After two days on meds, the wound looks worst to me.

Direct admit to the hospital. 2 days of IV antibiotics on the heart ward. Two days of boredom and listening to nurses complain about other patients. 🙄. In all fairness, some of the patients were a bit over the top. Still, its scary for heart patients, IMO. One of the other patients asked me my opinion on which heart surgery I think she should have, she is conflicted. OMG. The one your Doctor advices.

Third day, my heart surgeon/cardiologist actually appears. We can’t save the pacemaker. Really? Knew that the minute ask a nurse said I had four hours. Knew that the minute I learned I had a staph infection. Btw, the cardiologist never told me this and, to date, never said anything but I had an infection. Never said it was a staph infection. Worst doctor in the entire world.
 
The doctor is on a roll. He shows up the next morning. Its a Friday. He says he will take the pacemaker out at 3. I mention I hate not eating 😂. He says he will keep me in the hospital till Monday morning, and put the new pacemaker in then. He is an idiot.

No. I say.

I will not be able to use my left arm for four weeks, again. If he puts a new pacemaker in, it will go on the right side. I will not be able to use my right arm for four weeks. Hmm. Yup, this guy is an idiot. How does he think I can manage my life with no arms?

Plus he gave me a staph infection with the first pacemaker so he will never operate on me again-never. Plus I will never get another pacemaker, never. We discuss this, yup, whatever-go talk to a wall. No means no. We will discuss it later he says. No, no we will not.

10 minutes later he is back. We will do your surgery in 10 minutes, he tells the nurses to hurry, gathers a team, says he doesn’t need to explain about the change he tells the nurses, they rush me down to the ER, I sign the paperwork on the operating table, out I go, out the pacemaker comes, and I wake up back in my room.

I am kept over night to make sure my heart does not “crash”. He says he might need to put the pacemaker in to save my life. I refuse. He does not seem to understand or maybe the only voice he can hear is his. He says all my symptoms will comes back, only worst. Yay for me. It has something to due with the heart adjusting to normal, and then normal is removed. Whatever.

The incision is glued closed. Three days later it starts to reopen.

I see my regular doctor who says she would have never put me on the me medication the ER doctor used. I am in kidney failure and that medication affects your kidneys negatively. I have only one kidney and I am in stage two failure. She does a blood test. My kidney function has dropped to 40-stage 3 failure. Wonderful. She noticed the wound was reopening.

Couple days later I have the instant care doctor retape the incision. The incision leaks blood and a thin white fluid. Tape comes off, same spot totally reopens. Oh good god. See the cardiologist says it’s fine, not infected. Hmm. On the way to see my regular doctor, we are hit by a car. Uninsured driver, no license, driving a borrowed car, no English, and wanted by the Unified police-already.

Salt Lake police show up, Unified shows up, my son comes in case we need him, and I am taken to the hospital in an ambulance cause I am a week out of heart surgery; and my back has gone into spams and I can barely walk with help. Lovely.

Driver of the other car-arrested.
 

ER doctor does a culture on my wound cause I tell him it’s a mental health issue and I’ve missed my doctor appointment and she was going to culture it cause I am going crazy. Culture is negative.

Follow up with PA who gets idiot cardiologist to look at my open wound. Says it’s not infected but gives me an antibiotic cream for staph infection to put on it. 🙄. Says come back in, in 2 weeks for recheck. It will be healed by then. A week later the wound is still leaking blood and a thin whitish fluid. Another spot, a pinprick spot, to the left of the wound the very beginning of the incision has opened up. 😮. I ask my doctor for a referral to wound clinic. I cancel the appointment with the cardiologist-never seeing that idiot again.

The wound clinic is great. There are two nurses aides and an NP. They take pictures of the wound to track your, hopefully, progress. They said my would would never heal on its own, which I already figured out.

They throughly explain the process, explain that YOU are in charge and they will stop at any time. They are kind and gentle and informative and understanding. (The cardiologist ridiculed me for my concern over the wound.)

The nurse practitioner had to scrap the wound out and cut out dead tissue-some what painful. Then they fill the wound with silver collagen. The silver kills bacteria. And place a special type of bandage on it. She looks at the pin prick spot and says they will keep a close eye on it as well.

Today, oh joy, I get to take the bandage off, clean it out with a saline solution, I can get it wet in the shower now with soap and water. Then I put the silver collagen stuff into the wound and bandage it with a bandage they gave me. I see them every week till it heals. The wound hurts.

The wound has been open and draining for 4 weeks.

I am being pressured by my regular doctor to have a new pacemaker put in, as I need a pacemaker. She says we will discuss it when I am over the trauma of this experience. She says we will get a new cardiologist and use a different hospital. We 😂 will NOT do this, never having a pacemaker again, never.

She says infections are rare. 😳
 
Geez. I had wondered where you were. I'm sorry all this is happening to you. I do hope it gets better.

My experience with doctors: some has been good, but some has been really bad (one day I'll tell the story of how pill recommendations ["you'll die if you don't take them"] ended me up in a wheelchair, which I am just now recovering from, five years later). So I take everything they say with many grains of salt, and don't let go of my ability to say no.

At any rate, I'm glad to have you back. I'd been worried about you. Please keep us updated.
 
Our car will be repaired in October but is drivable. There are so many accidents in SLC now with all the new people moving in.

Last Friday, a week after the accident, an upper crown fell off 🙄. I have now completed my “3” bad things cycle. The dentist, who was open Saturday morning, glued it back on. Hopefully I am done for a while and the wound heals with no more complications
 
Cardio-surgeon killed my husband. He did everything wrong post surgical and took advantage of me as I was in shock at the time. So I believe everything you say about your jerk. Of course when they kill you, it's not murder because you gave them permission when you signed that stack of papers. Saying no is your only defense. Good for you and good luck.
 
Aneeda……I am totally lost for words. I can’t even imagine the he’ll you’re going through.
You have great strength. Try and continue to be strong.
We here are so appreciative of you, for posting.
My prayers and heartfelt concerns are with you 24 / 7.
Please take care, try to keep contact with us…..you half a lot of life to live yet…..for yourself, your friends, for your family.
 
Cardio-surgeon killed my husband. He did everything wrong post surgical and took advantage of me as I was in shock at the time. So I believe everything you say about your jerk. Of course when they kill you, it's not murder because you gave them permission when you signed that stack of papers. Saying no is your only defense. Good for you and good luck.
So sorry about your husband and yes i believe your experience also.
 
I looked out my window this morning just as the day was breaking. I saw a truck with a sign on the side, "CareicaHealth." Rather curious as to what in the world was he doing, I noticed a man taking out 2 small oxygen tanks. Then he put them on a small trolley and took them into my building. I thought to myself, "aha, a life long smoker who cannot breath on her own anymore?" But the truth is I don't know why this person needs an oxygen tank.

What I do know for sure is that I don't use one, I can breath on my own and I can enjoy going outside for my daily half hour walk. I can climb 4 flights of stairs without stopping. Looking at those 2 oxygen tanks made me realize how fortunate I am at the age of 76.
 
I looked out my window this morning just as the day was breaking. I saw a truck with a sign on the side, "CareicaHealth." Rather curious as to what in the world was he doing, I noticed a man taking out 2 small oxygen tanks. Then he put them on a small trolley and took them into my building. I thought to myself, "aha, a life long smoker who cannot breath on her own anymore?" But the truth is I don't know why this person needs an oxygen tank.

What I do know for sure is that I don't use one, I can breath on my own and I can enjoy going outside for my daily half hour walk. I can climb 4 flights of stairs without stopping. Looking at those 2 oxygen tanks made me realize how fortunate I am at the age of 76.
You are fortunate. I will be 76 soon. The chest pain, the breathing issues, the extreme fatigue all because of a too slow heart rate are a total bummer and curable only by a pacemaker. But a staph infection is a nightmare. I won’t go through this again. Won’t risk it again.

No pacemaker for me.

For any one considering a pacemaker, it’s a 0.05 chance of infection and most people take that chance. Telling my story lets people have more information about what an infection can mean and it could have been a lot worst.
 

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