A BIT OF A SCARE

[DawnTX]

Last week I had a bit of a scare regarding my pacemaker fitted in February. I have a unique pacemaker one set up only for me. Prior to this there was nothing to help me and for the past year I have been living with tachycardia and a heart rate of 150+ I have a typical flutter and a fib as well as heart failure. I won’t bore you with all the details. I have written many times on here but to those of you who know me, you may remember that my pacemaker is cutting edge and even has an app from which I can transmit no matter where I am, as well as the fact I am monitored 24 seven and also have a hotline to call 24 seven. I had finally started feeling amazing better than ever. Prior to that I was doing fairly good but not 100%. Well, as soon as I said that of course I started having chest pain and shortness of breath. I wasn’t sure if that was part of my heart failure which the pacemaker cannot help. You also probably know that a pacemaker does not stop feeling things like a fib or flutter. However, it does stop it from affecting your heart and causing further damage. Yes, that means I can still feel flutter and sometimes it’s miserable as it always was.

Because of this going on I went into my app for the pacemaker and the first thing I noticed was my battery life had dropped from 11 years to five. Well that doesn’t mean it’s not working it frightened me that if it did this suddenly again, I would have no battery left. I placed a call to my nurse to let her know what happened and try to remain calm. Of course, I did this on a Friday and had already missed.them. I just decided I’ll wait until Monday because to go to the ER other than for emergency treatment is not helpful because they don’t know my pacemaker so all they would be able to do is make me comfortable until they reached my a P who designed the procedure. Meanwhile, I decided to check out the Internet about my particular pacemaker brand and what did I find? A statement by the FDA with my pacemaker on the list of others having problems with the lithium battery cracking and draining. After a few headaches getting to the right people a.k.a. my doctor on Monday, he wanted me to come in that afternoon.

oh, I also have a tech from Medtronic’s assigned to me who is always involved with my follow ups with my EP. In the beginning, I thought they were kidding when they told me I was special and unique. Well now I know it for sure.

My tech was is the first person to see me. She understood why I was nervous and said she would be also. She had been on the phone with the engineers at the company who can get into the pacemaker deeper than anyone else. My battery was not cracked, and then it was explain to me via the engineers, what is going on. Evidently the wiring of my pacemaker is so unique that for the first four months, the only one who can see accurate numbers. are the engineers? I guess they use what might be considered the back door to it. I had just hit the 120 day mark a week or so earlier. Bottom line is that my safety net is better than anything else out there according to them. Not only do I have a back up lead, but there is a third lead not attached, but in there if it were needed. In other words I’m OK. My wiring is called HIS pace bundling. Again it’s unusual and very new. This was all done to keep me going. If my doctor did not create this, I’m not sure if I would be writing now. December I really thought it was the end.

Well, after all the technical, which I do understand most of it because they put it in layman terms, and I have been learning about everything from day one in the hospital with my tech by my side. It’s very helpful to understand what is going on and to ask questions.

My EP came into see me and immediately took my hand and told me you are not going anywhere from me. I told you this before. Yes, I was sure if my battery dropped again I was going to die because even with the safety time they would not be much to be done for me, except try to get another pacemaker in and if my doctor we’re not around I’m not sure that could be done.

Anyway hit him with lots of questions the first being did you get the letter from the FDA. I was confused when he said that was not my pacemaker, but then he explained the physical pacemaker is the same but that’s where it ends and that everything else. Is strictly mine. My doctor has been invited to Dallas to teach EPs there the technique he used on me after presenting my case at some thing he was attending. They want to learn to save people like me. My doctor really cares about quality of life sooner than later, as well as not taking no for an answer when it comes to something to help a patient. He thinks outside the box. I am so grateful for that.

I did learn that most pacemakers do have their battery last 10 years but because I am 100% dependent and the way it is used and actually cuts battery life in half. That’s OK with me as long as it’s working lol.

I did meet a person on here in the UK that has the same pacemaker. Mine is in Azure by Medtronics. There is a list of others, because it is the battery more than it is the pacemaker. To the person who has the same as mine and got it, I believe in the December, you may want to check things out about this because I have no idea how you are wired but it’s the battery just so you know. They say if the battery is going to crack, it is usually in the first 11 months. I am going to try to find the article and post it here not to scare anyone but it’s better to be aware.

Meanwhile, my EP had me do a nuclear stress test the other day those things are awful😱 I will see him Wednesday. As he says, he is the electrician and my Cardiologist is the plumber, and he wants to make sure if there is nothing wrong with the plumbing, including any blockage to cause the symptoms that I have. He believes it is stress and anxiety for me, which I have been diagnosed with anxiety, and I also have PTSD and depression. I did not think I was anxious, but then I thought about when this started. I have shared my newborn kittens on here with friends. Well, the week before everything started for me we had to of the babies killed and we aren’t sure what it was that got them but it was horrible. The third ki kitten was missing, and my side panel was half torn off my car with a big bite mark. Thankfully the next morning daddy cat was on the front porch with the missing kitten and had her on the cat tree guarding her. I had already pulled the mother inside and scooped up the kitten, and brought her to her mother. Yes, I still cry off and on about this it’s only been a couple of weeks. The kittens were just starting to become a little people with personalities. My car had been moved prior to that where I had. It was where the kittens had been playing that night. I think little. Miracle may have been hiding in the wheel well which is why my car was attacked. I don’t drive very far or often and I always made sure I counted the kittens before I did go anywhere. Yes I named the survivor. Miracle for obvious reasons and daddy cat is now known as HERO he answers to it also. If not for him, I’m not sure where she would be. Anyway, I have to admit I still have active anxiety right now because I am on a new medication that has not quite taken effect yet.

Thank you for reading my babble. I did want to share about the FTA warning and will post it within a few minutes. Only you when your doctor would know if you are at risk at all

[Gumbie_Cat]

So glad that it was all right in the end! Good to hear from you Dawn, and that your pacemaker is continuing to work well - even with all that stress.

[Nannysue1]

Hi Dawn glad you've had your mind put to rest.Weve chatted on here before as I have the Medtronic Azure and the very handy app on my phone which monitors 24hrs a day and also can send any readings that I may be worried about directly to the pm clinic. It tells me how much activity I carry out each day and shows me how much battery I have left, in my case 13yrs. Like you I'm 100% paced having had the AV node ablated. Lots of people on here have a monitor that they take home with them which enables the pm clinic to monitor them. The advantage with having the app on my phone is that as long as I have it with me, I'm monitored without having to bring anything with me.

The findings from the FDA that you've given the link to, were in May 2019 and the case mentioned at St Judes was 2016.Since then Medtronic have changed the manufacturing process and have changed the capacitor in the pacemakers, which was the problem.

Not sure if the UK have been using the Medtronic longer but I definitely have never been told that I have anything special?

Anyway, hopefully, your mind has been put to rest by your EP and as I say, since this report of 4yrs ago, adjustments have been made.

Glad to hear that you're doing well. I went to the pm clinic last week as I felt that maybe they could tweak mine a little to give me some more oomph getting up steep hills. Theyve been amazing and with that tweak , all feels good.

[Teresa156]

oh Dawn, I do hope you feel better from now on and I’m glad things worked out ok in the end…and that you continue to feel better in the new meds. How scarey for you. I’m so pleased the pacemaker is ok though.

What a great hero Daddy cat is and your little miracle cat. 🐱

Teresa

X

[irene75359]

How very stressful for you. I am not surprised that you are suffering from PTSD. My daughter had to have open-heart surgery at 21 due to an congenital heart defect that was only discovered when she was having a medical prior to going to Sandhurst. It turned her world upside down, especially when the doctors had no idea how she had managed until then, and she had counselling for PTSD afterwards. I hope things start looking up for you, and that you (and your pacemaker) are carefully monitored.

I am so sorry to hear about your kittens. We had cats for many years and each and we mourned the loss of each and every one.

Miracle and hero, how fitting!

[DawnTX in reply to irene75359]

hi Irene, thank you. I had called him daddy cat until then, but yes, I thought hero was sitting in the fact that she was the only survivor she was a miracle.

It has gotten worse and we lost another cat two nights ago. This time we know what the animal was, it was a pack of three dogs because my neighbor got it on their camera in her backyard. He. He was ferel and came with the house. We moved here last year. A big, gorgeous white cat with blue eyes and some gray spots on his body. He was madly in love with my oldest female and would lay B side her out in the yard with google eyes at her. Tonight she was looking over the front door standing on her back legs. I’m afraid she’s looking for him. I brought her inside and miracle is with her. We were going to get him neutered so he could come in. We still had a way to go earning his trust. Meanwhile, he’s been laying on the porch and coming to eat. Such a good boy.😢💔 so as you can imagine the pain started in my chest again and my throat tightened yesterday. My cousin buried Fritz. last night.

Thank you for your kind words. We still have a litter that was born outside. I’m trying to get them in the mother in. I’m terrified about them.

The PTSD probably comes from my job in law enforcement. It’s never one specific thing it plays like a movie of certain events. It could be an old one or a new one. It just won’t stop. Sometimes all different events come through my head it’s a very dark place. Your daughter has probably told her that. I don’t usually cry I internalize which doesn’t help.

There is still not enough that they can do for PTSD and anyone that doesn’t have it probably cannot understand what it is like. I know what the events are and they were horrific, so yes they were upsetting but that doesn’t make them go away. That’s the problem. You never know when they will come. Usually they are triggered by something bad. I have a new medication I think it’s starting to work, it’s for the anxiety part but that may also help drive the other away.

I hope that your daughter is doing better now. Big hugs thank you again.

[Cremee]

Hi Dawn,

Hope all is going well with you, regarding your pacemaker.

Would you mind sharing your EP doctor’s name?

Thank you.

Jane, from Houston, Tx❤️

[DawnTX in reply to Cremee]

Hi Jane not at all. His name is Aditya Saini and he is at the Heart Hospital of East TX in Lufkin. I can’t say enough good about him. He doesn’t give up on us and he wants quality of life for us. I could go on and on. He’s not like others that will repeat cardioversion and ablations even when they don’t work. His entire staff is amazing. Shannon is his nurse just in case you make a call and end up talking to her. I adopted her lol I just adopted one that gave me my nuclear stress the other day. Lol. His staff is amazing and he gets such respect from them. I actually miss everyone. I spent so much time there the last several months lol. When you have a great doctor, you get spoiled and treated like a Princess. He is very humble and low-key and he talks to you not at you. He helps you understand. Last week was a lot to take in. It’s the first time I can’t remember everything because it was a lot of technical engineer talk lol what I have only I have it. It’s not the pacemaker. It’s how he had to wire it for me, because as the tech is assigned to me says lol I am unique lol I like to tease her and I will say stop saying I’m weird 😹😹 every time I do this to her it takes a minute for her to realize I’m teasing her. Feel free to reach out to me if you have any questions. Prior to this, I had gone to Methodist Hospital in Houston. That’s a whole other story it’s not the hospital. I can’t say enough good about them and DeBakey Cardiology. If you read on here about Dr. Wolf, he is the one that does the mini maze and the doctor I had pioneered another procedure called the Vein of Marshall I can’t even talk about it again it makes me sick. I would highly recommend the hospital, but that’s it. I would not wish anyone to have the doctor I had because of what happened.

We are blessed to be in the Houston area. I am amazed at the medical treatments here. I live with my cousin who has had one hip replaced, and about to have the other. He was back to work the following week with just a walker.

So glad to see you on here. This is my new home just a year and a half now FYI.

[Nannysue1]

Hi Dawn. I think I was missing your point about the Medtronic Azure pm. I thought that you meant that the pm itself was new and unique, that's why I couldnt understand why nobody had informed me over here that I had anything special fitted myself.Seems like you meant that your EP has somehow wired this differently for you to adapt to your personal problems. That sounds fantastic.

[DawnTX in reply to Nannysue1]

I may not have realized in the beginning. When I saw him a few weeks ago is when I realized it is the wiring plus use of the pacemaker, which sounds like it has not been available for very long here. Yes the big part is the wiring and what I do know is when it comes to my pacemaker, the doctor and the tech usually need to speak to the engineers at Medtronic’s. I don’t know how many leads you have. I have the one I am 100% dependent on then there is a back up That it would switch to if there’s a problem then there is a third one in my atria that is not connected at this time but it’s already there if they needed to connect it. In Laymans terms, I think I would say that yes he figured out something for me, but it is something that would help others as well. I am so grateful to my doctor is all I can say.

thank you

[Nannysue1]

Hi Dawn. This technology is really amazing isnt it. Yes I gave one lead and 100% dependent following the AV node ablation. I have a little "escape route" in that, should the pm fail, my heart will continue to beat at 30bpm, which would make me feel very ill but hopefully buy me some time to get medical help.I'm glad that the pace and ablate procedure has been successful for you as it has for me, I consider myself very lucky and thankful for technology. Take care.

[DawnTX in reply to Nannysue1]

hi Nanny Sue , I agree with you and I feel that we have been blessed. The doctor did explain the escape route. Also, if something weird is totally shut down my pacemaker. Because of the wiring and the control they have, they would switch me over to the second lead, but even doing that would take time, so it’s good about the escape route. Others on here have mentioned numbers etc.. Perhaps they didn’t tell me because they are in control of me but it’s still nice to know that if something goes wrong with the pacemaker we don’t just fall over her and it is the end. I’m constantly shaking my head in wonder with the fact that my amazing doctor came into my life. I keep wondering why I was so lucky but I think I will just be thankful and not question it anymore.

please stay well yes without the AV node ablation the rest of it would’ve been useless. No matter what it is I do it feels good knowing I can. What you and I can do is share with others to not be afraid of something new. So many are afraid of pacemakers.

hopefully with your doctor or anyone’s doctor a pacemaker is a necessity when they talk to you about it, so I don’t want anyone afraid they need to know it’s a good thing for them. I had nowhere to go, but down my PMs saved my life. I have no doubt.