Well I am not sure if you’d call it good news, but it is for me
13th was the FIRST birthday of my new heart so to speak lol that’s what I call it
One year ago my EP found a way to save my life. I was unable to walk, and I had had a cardioversion that not only failed, but almost finished me off.
my EP, who has a passion for what he does when and created a working pacemaker and wiring just for me alone. The pacemaker was your pacemaker, except duo I believe, but the wiring was not only a new type of wiring called HIS pace, bundling, but it was the way he had to do it for me. Evidently my own wiring had nothing normal about it in both upper and lower chambers among other problems. Because of this, there was no pacemaker to help me until this incredible man thought out of the box. When I found out about my cardioversion failure, I cried, but he took my hand and he told me don’t worry I’ve got you I’ve got this you’re not going anywhere . He has said this a few times now, and he holds true to his word. He doesn’t lie to me. He explains things I ask, and I do what he tells me if he tells me to do or not do something it’s a great partnership.
February 13 of last year I was unable to walk because of my circulation, etc. and I also was in heart failure and going downhill fast. When I arrived to the hospital I was in a wheelchair, but when I left, I was able to get up and walk out and get into the car with very little help.
I am able to go outside with my dog prior to this I could only sit on the porch and hold his leash while he did what he needed to do. to the bathroom was actually a scuffle down the hall with tears and crushing pain in my chest trying to get there.
I am happy to say that today we had to been out at least a half a dozen times something my dog loves to do I won’t be running around throwing a frisbee and catching it but I am so thrilled with what I can do. I can even shop in Walmart again lol, oh when I get home, I’m ready to sleep for the night. It takes a lot out of me but I can do it. Day by day I’m getting stronger. My stamina may not ever be the same again, but I can do things I’m not just a lump on the couch , I can hop off the bed and if I forget something in the kitchen, I can go back and get it when it used to be not worth trying to go back. It was so hard to get there.
Anyway , I just want to share the fact I feel like I am a success story finally, and I want others to realize you are your own worst enemy at times think positive if you can even if just a little bit about something you are going to let a fib run your life which means you’re not gonna have a life because all you’ll be thinking of is your heart. It doesn’t do things you shouldn’t do that you’ve been told not to do. What it means to me, is doing what comes naturally not thinking first oh my heart I can’t do that. If you can’t do it, you’ll know it otherwise go for it.
earlier I sing happy birthday to my heart lol my cousin thought I was nuts maybe I am, but I’m smiling
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DawnTX
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Thank you hon it’s been a very long two years actually longer than that but since I got to Texas is when it really got rolling. I don’t think I’ve had any more ups and downs than the rest of us on here. I am sharing because when we are going through it, none of us can really see the light at the end of the tunnel and we wonder is it really there? The one thing that be repeating is that we are all different. We may all have a fib or flutter but it’s not the same for everyone which means the same thing will not fix everyone. I am living proof emphasis on living. I was blessed with an EP who is passionate about what he does And thinks outside the box. Even better is the fact that he wants to share with other doctors. so that others like me might be smiling too. It would be great if they had a magic wand but they don’t so we have to realize no matter who your doctor is or what he is doing. It takes time for your body to adapt since my last procedure the big one it pretty much took a full year. That doesn’t mean I haven’t had some great days but you can’t let it hurt you. You don’t have your great days it’s gonna happen most likely.
Thank you for writing. You were one of my very first people on here that started showing me the way to learn to live with it. ❤️ we can all be each others cheerleader guiding the way through the rough patches
oh I remember yes plodding is the good way to put it because that’s the way it feels like we’re never gonna get to what we want. Since the pacemaker, it hasn’t been all roses but now when I look at it, I realize it wasn’t that bad not likely before the procedure. Once I stopped being afraid of my pacemaker. We became very good friends lol, it’s there to help us and it has lots of support. It’s not just going to quit on us according to my doctor and the engineers. We no longer have to worry about. I forget what they called is the number of hours that you might have, but instead they are now providing back up that takes over. For the people who have already had their pacemaker, just ask your doctor what happens if your battery were to suddenly quit. You will find out it’s not the horror that we thought believe me I have driven my EP crazy with my questions. For a man is intelligent and technical as he is he is a very good teacher, putting in layman’s terms to ensure me, I have nothing to worry about. I will be seeing him in a couple of weeks I can’t wait❤️
Thank you I want people to know I’m not bragging I’m sharing so that others have the hope that I didn’t even know I was going to be able to have. A year ago this past Christmas I thought it was over
Tracy I will contact you probably tomorrow. I don’t know what good I am, but I will be Glad to help. Because of what my EP was able to do, he was asked to go to Dallas to teach EP‘s up there what he had done and how he did all of it I am not sure exactly where, because he attends seminars, etc. and he is an instructor, his name is Aditya Saini of heart Institute of East Texas. He is located in Lufkin Texas. He has things on YouTube explaining various procedures, etc. I’m not sure where else believe it or not. He came into my life. Thanks to my male carrier lady. We were talking on the porch after the failure I had in Houston. I used to sit on the porch. That’s all I could do because I could not walk. She mentioned the Cardiologist for her parents, and next thing you know I was blessed with Dr Saini through the Cardiologist. He did not wait he met me, and by that Friday I was on the table for a cardioversion because my heart rate was so bad as was my heart failure. I will write to you and see what it is. You would like to know when I see people afraid out here like I was. to hug them and tell them there is hope
You’re an inspiration Dawn! As is your EP, who knew just what was right for you. It’s refreshing also to see success as living a normal life, not in pushing ourselves to the limits.
Thank you for sharing this incredible story. The courage you have,to get where you are today, is beyond words. I wish you lots of happiness which you so much deserve. You are a huge success story and then some. Xxx
I am just a person like you and I often wonder why I was so blessed with the way things turned out. I want to share I want to encourage because just like when I started I see so many people on here that are afraid. Fear will paralyze you and you won’t get anywhere. We need to support each other. That doesn’t mean pandering it means being honest so they are not disappointed when things don’t go as we hope because with a fib that seems to happen quite a bit. That doesn’t mean don’t be hopeful. Just have an open mind and oh yes, I believe in miracles for sure but they don’t come along on a constant basis they will happen hopefully when you need it the most.
I was so happy when I found this site even though because most of the people are in the UK I don’t always understand because our medical is so different in the states. I am horrified at the fact that you all have to wait like you do because there is no time to wait and I’m not saying that to panic anyone. The one thing I found on here are the number of people who take it upon themselves to change medication, etc., please don’t do that without your doctor involved Because it could make you go from bad to worse
Thank you for writing you made me glad that I did and I don’t feel so silly now
What a lovely story and I am so pleased for you. Long May it continue. Take care.
p.s I fell in love with Walmart when I visited the states. Mind you once I knew about Michael’s, Joanns and hobbylobby that was it. Being a crafty person you couldn’t get me out of there.
I think a pacemaker is a great thing. I never felt that way previously about having something artificial keeping me alive but now I realize it’s much smarter than most of us are.
The thing about my pacemaker is, there was not one made from my problems. I had not known that, although my doctor kept talking about me being unique. The physical pacemaker is probably the same many people have, but it is what he did with it and the wiring, that makes it unique unto me alone. I only know one other person that has similar including the app with it now that was a year ago I’m hoping lots more people have gotten this done since then I don’t know how long it’s going to take for EPs to learn because it’s not a matter of learning, it was a matter of finding a way to do it, because it hadn’t been done. As I mentioned in a previous post, it takes a village not only starting with my Cardiologist but my EP has the most fantastic team of people in the hospital and every time I’ve been there I have the same ones they have become family. On top of that from day one I had a tech from Medtronic, the maker of my pacemakerand she has also been there. She can check my pacemaker with a handheld device and can also change things if she needs to. When I first got it, I actually had what I felt was an echo in my chest. I mentioned it to her and she checked something and then made a phone call. The engineers play a big role in the company with me. Well it turned out someone has left a back up switch on. It was not harmful, but it was the cause of the echo, so I really was feeling something. Of course, being brand new with a pacemaker I was aware of every failing anyway, and would question everything. The tech is with me when I have my check up I have one coming up now they used to be once a month now they are every three months. I also had a worry about my battery losing five years of life within days. My EP brought me in immediately With the tech and the engineer on the phone using whatever equipment they use and they facility because I am monitored 24 seven. The engineer had the answer. That’s why we have to make sure we don’t think we know everything because we don’t there’s a lot of behind the same stuff going on, and there’s no need for us to know it, and there is no way they could teach it all to us , do you realize the training these people have had an EP these daysis Not just a doctor he is a software engineer he is everything besides handling us as people. I think the new breed of surgeons are getting better at doing that EP is much more of a person than other surgeons I have dealt with. Most of them are all business. It’s just the way it has to be.is so involved and they have so many people to help. I had a wait with my cardiologist in Florida one time it was nine hours because of the emergencies comingThat had to be addressed first. Instead of 9 AM my procedure was after seven that night and not over until after 11. I could’ve gone home but I was already prepped and everything else so I stayed. I could hear flight calling in for him. Can you imagine having a day of that all day long?
Be patient with your doctor and other staff. I got a front row of very unusual things. I wish everyone could’ve seen it because the respect you would have them all just can’t even be explained.
I don’t know how I got so blessed to have all of this happen just for me, but it did.
Hi Dawn, as you havegreat faith in your Cardiology Team, I will relate my story of a very similar episode with a Surgeon at New Cross hospital in Wolverhampton. I was admitted there after spending two weeks in Exeter hospital with Gall stones identified there, Prior to this I had spent 12 months with symptoms which my GP said was heart related.
Whilst waiting for the Surgeon to see me at New Cross, there was a patient opposite me with 4 policemen round his bed and the language was appaling. When the surgeon came he said 'So you are the one who signed himself out of Exeter' and walked away. I called after him and said 'would you like to know why' he returned and I told him what a torid 12 months I had in and out of A&E with symptoms of extreme pain.
At this point he became fantastic and eventually said he could not perform key hole to remove my gall bladder but would recommend another surgeon. I said no I will stay with you, after how he had looked after me.
He was Portugese and I took him 6 bottles of excellent wine fron the Douro region of Portugal as a thank you. I told him he had restored my faith in our National Health Service.
I know this is not about AF, but does reflect on another fantastic individual
You had your specialized Dr Wolf surgery, and I had what I had hoped to be a good one at DeBakey at the same time. You were my inspiration now I want to be inspiration to people.
it took me longer and part of that was me procrastinating in finding another doctor, because I was living somewhere new. Once that was done, I am just amazed at the past year plus but especially the year that I just celebrated my new improved heart. You and I Need to tell others that there is hope. I don’t know if you agree with me but part of it is getting out of your head worrying. That was the biggest enemy for me questioning everything about anything I felt not knowing what was normal and what was not. The good thing for me was my incredible doctor/EP would explain everything to me. All I had to do was ask And his nurse was the same way. If she didn’t have the answer, she would go and get it from him and then call me back.
I also have a special thing to share that I feel as part of my story also shortly after my pacemaker etc. when I was home I found that one of my cats had kittens. She went for a walk. I checked on them, and was horrified to find them dead. She came back. I zipped her into the crate also and brought them inside. I really didn’t know what I was doing, but I started giving CPR and heart massage to the babies. Yes the babies came to life just by sticking their little tongue out at first then I placed them with their mother sadly the third one never woke up. But I felt that my miracle for me carried on to these babies born on Good Friday of all days.
This is a picture of them. They will be celebrating their first birthday instead of the date. I am always going to use Good Friday. What better day to have a miracle
So happy for you. What a lovely story. I feel quite uplifted for you. Amazing EP, There are some good, amazing Dr's out there. Keep Well, all the best. Debs
that is what I was aiming, for uplifting people, and showing there is hope. If you met my EP you would be surprised he is young and humble, and so passionate about what he does. When he has a patient willing to learn from him at least with me, he really opened up. He wants us to learn to live, and not have afib running our life. I am going to ask him more about him. Going to Dallas if he’s done it yet and how it’s going. Like it or not I think this man is going to be famous someday. I have stated I think he came out of the womb, already an EP lol
it’s not happy about being for me. It’s about the fact that something was created. Someone cared enough to push against the tide to help me live. I don’t know why I was so blessed but I couldn’t be more appreciative.
Dr. Aditya Saini. Absolutely deserves things. I think he already has many he doesn’t talk about it but you can look him up on YouTube and other places and he is either explaining about a condition or procedure, etc. teaching is his passion along with saving us. Tears of joy for all of us that have a fib or flutter, or any other type of heart condition to know that there are a doctors this dedicated.
Thank you I want people to be happy that there are doctors like this who cared enough about all of us to be doing stuff like that on a daily basis and constantly trying to make it better
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