My Pacemaker Journey šŸ˜¢

Damn!! That is one helluva journey!

@Aneeda72 you are a strong woman! Iā€™m inspired by your steadfast ability to tell the doc NO! Iā€™ve always been my own health advocate but Iā€™m not sure Iā€™d have had the persistence that you had.

Iā€™m disappointed, for your sake, that the benefits of the pacemaker you experienced during the short time you had it, are no longer available to you due to the trauma you experienced. That really pisses me off for you!!

Im so glad to hear that youā€™re home and recovering. ā¤ļø
 

My wound, while still very painful, is looking much better. The wound doc thinks it will heal in a couple more weeks. Thank heaven. Having an open wound in your chest is not a good thing.

I called the cardiologist office and told them to put an note in my account that if the ER calls and says I am dying and he is on call-let me die. He is never to treat me again. He is such a jerk. This was the wound. 87861A17-05B4-4253-8F2B-3C1178A50CA5.jpeg
 
Aneeda72 said:
My wound, while still very painful, is looking much better. The wound doc thinks it will heal in a couple more weeks. Thank heaven. Having an open wound in your chest is not a good thing.

I called the cardiologist office and told them to put an note in my account that if the ER calls and says I am dying and he is on call-let me die. He is never to treat me again. He is such a jerk. This was the wound. View attachment 241630
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Itā€™s a vicious wound, šŸ˜– but I can see that itā€™s healing. Thank God!

Sure wish we lived closer @Aneeda72, I would be over in a heartbeat to help. Food, run errands, whatever you needed!

I hope you continue to improve.

How is your breathing and overall general health currently?
 
Ronni said:
Itā€™s a vicious wound, šŸ˜– but I can see that itā€™s healing. Thank God!

Sure wish we lived closer @Aneeda72, I would be over in a heartbeat to help. Food, run errands, whatever you needed!

I hope you continue to improve.

How is your breathing and overall general health currently?
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Thanks for asking, although you might regret doing so šŸ˜‚.

All my heart related issues are back, unfortunately. You know, despite the doctors considering me medically fragile due to the large amount of serious medical issues I have; I think I am doing ok.

Pain is my biggest issue and because the medicine to cure the staph infection lowered my kidney function and put me in stage 3 failure, I am not supposed to take Advil until my single kidney recovers.

But if I donā€™t take Advil I stiffen up so much from the arthritis and have so much pain that itā€™s not worth not taking Advil. šŸ™„. So I am taking less Advil, and explained this to my doctor who is unhappy, but it is what it is.

At our age itā€™s about quality of life, not about how long you can live as I keep reminding her. šŸ˜Š
 
Aneeda72 said:
Thanks for asking, although you might regret doing so šŸ˜‚.

All my heart related issues are back, unfortunately. You know, despite the doctors considering me medically fragile due to the large amount of serious medical issues I have; I think I am doing ok.

Pain is my biggest issue and because the medicine to cure the staph infection lowered my kidney function and put me in stage 3 failure, I am not supposed to take Advil until my single kidney recovers.

But if I donā€™t take Advil I stiffen up so much from the arthritis and have so much pain that itā€™s not worth not taking Advil. šŸ™„. So I am taking less Advil, and explained this to my doctor who is unhappy, but it is what it is.

At our age itā€™s about quality of life, not about how long you can live as I keep reminding her. šŸ˜Š
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I know I don't have all your other Issues Aneeda.. but I can relate with being unable to take Anti-inflammatories and Aspirin, because I have stage 3 kidney failure myself... so altho' I take the very odd Ibuprofen when I have inflammatory pain.. because lets' face it what else will do... ?.. I can only take it once... by my rules.. and never by my Docs rules..
 
@Aneeda72 Youā€™re a real fighter and have the wisdom to choose your battles. Have the doctors ever suggested CBD/THC creams, etc for the pain. I havenā€™t a clue if these work. Sending you hugs, if that helps.
 
hollydolly said:
I know I don't have all your other Issues Aneeda.. but I can relate with being unable to take Anti-inflammatories and Aspirin, because I have stage 3 kidney failure myself... so altho' I take the very odd Ibuprofen when I have inflammatory pain.. because lets' face it what else will do... ?.. I can only take it once... by my rules.. and never by my Docs rules..
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I am sorry to hear you are dealing with Kidney failure as well. I am at stage 2 usually. I will get a blood test in another week to see if my kidney has recovered. It is awful not to be able to take a lot of Advil. I refuse the ā€œgood stuffā€ although doctors seem happy to prescribe it for me. narcotics are a bummer and I avoid them unless I am screaming in agony.
 
Aneeda72 said:
I am sorry to hear you are dealing with Kidney failure as well. I am at stage 2 usually. I will get a blood test in another week to see if my kidney has recovered. It is awful not to be able to take a lot of Advil. I refuse the ā€œgood stuffā€ although doctors seem happy to prescribe it for me. narcotics are a bummer and I avoid them unless I am screaming in agony.
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I've been told that at stage 3 there's no reversing.. so if you can possibly manage to do everything that's required of you to get your kidneys back to shape, you must, because by stage 3 it's too late... My kidney failure wasn't picked up until stage 3 so.. I can't do anything to reverse the damage.. despite no-one knowing what caused it in the first place
 
Jules said:
@Aneeda72 Youā€™re a real fighter and have the wisdom to choose your battles. Have the doctors ever suggested CBD/THC creams, etc for the pain. I havenā€™t a clue if these work. Sending you hugs, if that helps.
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I practically bathe in Lidocaine 2.5 and Prilocaine 2.5. I also use Voltaire Gel. Use both on my knees and the tops of my feet. I have prescription lidocaine patches for my back. And then on top of these I would use Advil dual action which has Tylenol in it.

My hands are starting to turn into ā€œclawsā€ from the arthritis. The joints are so very painful but I donā€™t like to use the medications on my hands. They say using the joints is best for arthritis which is a lie. I am bone on bone in both my jaws and between talking and chewing for 75 years-those joints were used a lot. šŸ˜‚ Now I have to be really careful with chewing. Theyā€™ve dislocated once and that is really painful.
 
hollydolly said:
I've been told that at stage 3 there's no reversing.. so if you can possibly manage to do everything that's required of you to get your kidneys back to shape, you must, because by stage 3 it's too late... My kidney failure wasn't picked up until stage 3 so.. I can't do anything to reverse the damage.. despite no-one knowing what caused it in the first place
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My kidney failure is genetic and is a rare family disease. Passed through the females to the children. Both my birth children have kidney disease and their kidneys started bleeding when they were teenagers.

Donā€™t really know when mine started bleeding. In addition my right kidney, was a pelvic kidney, a birth defect. I have a few internal birth defects. šŸ˜³. The right kidney failed in 1995 and I started to bleed out. I had ER surgery to remove it. During the surgery they discovered the tube from my kidney to my bladder was wrapped around my spinal cord a couple times-another internal defect. Which explain the horrific back pain I always had since childhood.

Anyway, there is unfortunately no way to stop my kidney failure or my childrenā€™s kidney failure.
 
Wow, @Aneeda72 , your pacemaker story is like a nightmare, and you definitely need a different Cardiologist. I had my pacemaker put in about 3 years ago, and i am pretty sure that I would be dead by now if i had not had this done.

I had a-fib constantly, but also episodes of bradycardia, where my heart rate was slowly getting lower at night, and when I was down in the 30ā€™s, I talked with my cardiologist and my electrophysiologist (who did the ablations for the a-fib), and he put in the pacemaker.
It healed fine, and everything was fine until last winter, when the heart went back into a-fib again, in spite of having the pacemaker.

My doctor upgraded my pacemaker so that it is now in total control of my heart, because there was nothing more that they could do to stop the a-fib.
Now the pacemaker just bypasses that part of my heart and keeps the heart beating.
If something should happen to the pacemaker, they would have to get me to the hospital immediately, since the AV node is ablated, and the heart canā€™t work without the pacemaker.

I have less energy than I did before, and I know that my heart will continue to wear out; but I am still here, and i am thankful for the pacemaker.
It sounds like you will be having the same thing with your heart, and if it keeps going slower, some night, it might just stop beating altogether, so it would be a good thing if you can find a different electrophysiologist and have another pacemaker put in before your heart gets worse, and you have to have the ā€˜last ditch resortā€ pacemaker like mine is.
 
Similar experiences--including the one that almost cost me my life--are why I (and only I) make my health decisions; whether it's vaccines, tests, or procedures.
 
Happyflowerlady said:
Wow, @Aneeda72 , your pacemaker story is like a nightmare, and you definitely need a different Cardiologist. I had my pacemaker put in about 3 years ago, and i am pretty sure that I would be dead by now if i had not had this done.

I had a-fib constantly, but also episodes of bradycardia, where my heart rate was slowly getting lower at night, and when I was down in the 30ā€™s, I talked with my cardiologist and my electrophysiologist (who did the ablations for the a-fib), and he put in the pacemaker.
It healed fine, and everything was fine until last winter, when the heart went back into a-fib again, in spite of having the pacemaker.

My doctor upgraded my pacemaker so that it is now in total control of my heart, because there was nothing more that they could do to stop the a-fib.
Now the pacemaker just bypasses that part of my heart and keeps the heart beating.
If something should happen to the pacemaker, they would have to get me to the hospital immediately, since the AV node is ablated, and the heart canā€™t work without the pacemaker.

I have less energy than I did before, and I know that my heart will continue to wear out; but I am still here, and i am thankful for the pacemaker.
It sounds like you will be having the same thing with your heart, and if it keeps going slower, some night, it might just stop beating altogether, so it would be a good thing if you can find a different electrophysiologist and have another pacemaker put in before your heart gets worse, and you have to have the ā€˜last ditch resortā€ pacemaker like mine is.
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I suppose it depends on your age and where you are in your life as to whether you are willing to continue ā€œhanging in thereā€ or not. It is not a contest where the winner gets to live forever. šŸ˜ I was in the in-patient hospital cardiac ward on Saturday, šŸ™„. Well, dang. šŸ˜‚. Will post this story elsewhere.

Itā€™s kind of interesting. Ok itā€™s really interesting. I swear shit happens to me all the time.

I always have bradycardia, my A-fib is rare, I have SVT, I throw off PVCā€™s, and I seemed to go into short runs of V-tac every time I got up to walk down the hospital corridor. šŸ˜‚šŸ˜‚ Every time I walked down that hallway, the monitor in my room went off frantically.

I had refused treatment from that stupid cardiologist. I was asked by the hospital internist who was treating me if I wanted compressions if they became necessary. (She made the motions with her hands. I guess she thought I didnā€™t know what the word meant). šŸ˜±. Nope. DNR, DNI.

So no, I will not be having a ā€œlast ditch resortā€ pacemaker. But, yes, someday I will probably go to bed, my heart rate will drop into the twenties, and I will die.

We all have to die.

I am glad your pacemaker is helping you.
 
Anyway. My wound was not healed but getting there. They are putting some kind of oil cloth on it to keep it moist. They now think it will heal in two weeks. (Heard this repeatedly). If it is not healed in two weeks, call, get another appointment, and restart treatment.

Such treatment will include opening up the wound more, again.
 
win231 said:
Similar experiences--including the one that almost cost me my life--are why I (and only I) make my health decisions; whether it's vaccines, tests, or procedures.
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YAY we finally are in COMPLETE agreement about something.
 
I am heartbroken to read what all of you are dealing with. I will count myself as blessed that I only have to deal with chronic migraine (everyday) and a hip replacement.

I don't think I could deal with the pain and challenges you all face and still have the courage, strength to do all the things you do every day to have the best life possible.

It is a testament to all of us and I have so much respect for for each of you!!
 
@Aneeda72, I must have been away on vacation when you started this thread. I had been thinking of you and hoping your were okay. So sorry to hear all you have been through, my heart goes out to you, seems like you just never get a break. :(

Hoping you can feel a bit better soon, I admire you for your strength throughout all of this for so long. Hugs. šŸ’™
 
So good to see you back, @Aneeda72! And am so sorry you're dealing with so much medically.

Dunno if your arthritis is autoimmune? If so, healing often doesn't go well. Been there, done that with a fracture and more recently a wound. I had post surgical staph at an incision site that didn't show up until 6 weeks after surgery. Took several months for it to clear up.

Hang in there, lady! You're a tough one!
 
AnnieA said:
So good to see you back, @Aneeda72! And am so sorry you're dealing with so much medically.

Dunno if your arthritis is autoimmune? If so, healing often doesn't go well. Been there, done that with a fracture and more recently a wound. I had post surgical staph at an incision site that didn't show up until 6 weeks after surgery. Took several months for it to clear up.

Hang in there, lady! You're a tough one!
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The staph infection is such a bummer, sorry it happened to you as well. My wound still has not healed and is still draining but it is very very small. I have decided to wait another two weeks before returning to the wound clinic and see if it finally heals.
 

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