New, kinda long
Hello,
I'm new to this forum and I wanted to make my first post here. I'm 20 years old. I have a 15 month old son. Last year i got my pacemaker put it. During my pregnancy I had strange heart problems. After I had my son while I was waiting to be discharged to go home my pulse jumped between 260-300 BPM for over 10 minutes. They had a nearly impossible time getting it down. I met with a cardiologist and he sent me for an ablation. I woke up to an emergency pacer hanging out from my right shoulder. They told me that the surgeon accidentally "over Ablazed" my heart. But that once the swelling goes down I would be fine. My son was 2 months old. This happened the day after i turned 19. Two weeks later i was n the hospital with a friend and i almost passed out. When they put me on the moniters my heart rate was going from 14-28 BPM, i was in a 3rd degree heart block. They put me in an ambulance and drove me an hour away. I had emergency surgery and got a pace maker put it.
A year ago April first I got my pacemaker put in. I was not scared of the surgeries. And I thought I could handle it all just fine, I thought I was handling it ok. My son is 15 months old now. I cant run, I cant play rough with him on the floor. I cant take him for walks. I can barely even be with my fiance without becoming short of breath. I cant wear tank tops because I cant bear to see the scar or have other people see it. I feel like they give me weird looks, or pity me. I have been fine then suddenly this past month or so, i break down crying, feeling sorry for what happened to me and feeling extremely self conscious. I used to love how I looked, now I hide myself inside all the time. I think I need help, but Im so bad at asking for it. I'm 20 years old, I have a son, if i ever want more kids I'm now a high risk. A cardiologist lied to me, and now im completely dependent on my pacer. He told me I have a battery life of 10-15 years. I have to have it replaced every 5 at most.
I dont know what to do anymore. How did all of you manage to cope? What about the depression? What helped you?
Thank you for listening, Im sorry its long. Its hard to talk about it, but sometimes I just have to.
11 Comments
thanks
by FutrMzzD - 2010-04-24 07:04:24
Thanks you guys. I also realize I left some things out.
The cardiologist who sent me in for the ablation said i would have a 1% risk of bruising and bleeding in the incisions in my right shoulder and hip from the ablation. then I would be good to go for life. Well, that happened, and I got my pacemaker. Put in by the same surgeon who did my ablation. I have a St. Jude pacer. They told me that with the 3rd degree heart block that the battery life would average me 10-15 years, so my first change wouldn't be until mid thirties or so. And that with the pacer I would be better, healthier, and "oops, sorry the ablation went wrong, but now you are better again."
I live in phoenix now and met with a new cardiologist. I told him everything that happened, he couldn't believe and understand why they sent me for surgery when just cardiovascular therapy would have done the trick. I mean, when I told him, he became visibly and audibly saddened and shocked about it. He told me that if the cardiologist has waited, and they thought through everything, none of this had ever had to happen. But it did. I've had it checked a few times since my surgery, it runs fine, but i always pace and its estimated life as of January was 6.75 years before my next surgery. But who knows? Maybe by then they will have a bettery for all of us that will never die...
Rah Rah from the peanut galley
by harley63 - 2010-04-24 08:04:19
Hi there.... just popping on for a minute, read your post and wanted to say welcome to our family and that your in the right place for much support and understanding.
I had out of the blue 3rd degree heart block too... and was dependent on the pacer in the beginning. Over the past 3.5 years I've seen that being active has helped me, both mentally and physically. Looking back, I see that when I was a couch potato I felt the worst. So get on the floor with that baby and play with him. That should be great therapy in itself.
We are all cheering for you and will be here to listen and provide support along the way.
Zoom...zoom...
Harley63
adjusting
by Tracey_E - 2010-04-24 08:04:25
Have you had a second opinion? I'm wondering why they went for the ablation without trying a cardioversion first. Being dependent on a pm doesn't mean you have to live with not feeling good. They may need to adjust your settings, or there could be something they are missing that needs addressed, but don't accept feeling bad!
I don't think your cardiologist lied to you, but I do think he didn't do a very good job explaining the risks to you. You are not the first person here to end up with a pm after a failed ablation. It's not common but it's not rare either, it's always a risk.
Battery life- 7 years is average but some last 10-15. What makes you think it will only last 5? Battery replacements are super easy. I've had 4 now. If the first surgery was a 10, replacements are a 3 or 4. Do you have an ICD? They have a shorter battery life than pm's, 5 yrs is average on them.
People follow our lead. If we take it in stride and don't think of ourselves as any different, that's how other people will see us. I wear the tank top and don't worry about it! Most people don't look twice. Honest. Everyone has scars of some sort. I don't act sick, I don't look sick- people look at me and just see another mom. Many people who know me don't even know I have a pm. I don't keep it a secret but it doesn't affect my day to day life so it just doesn't come up in conversation and people can know me years and never have a clue.
Who said you'd be high risk for another pregnancy? You may be, but don't assume. My ob assumed I would be high risk, but when he talked to my cardiologist, the cardio told him that the pm fixed my problem and I am not high risk. I had two uneventful pregnancies and deliveries with a pm. Your situation is different than mine, but don't assume the worse. I had two drs tell me I couldn't have kids. Uh, they were wrong ;o) If it turns out you are high risk, get a good high risk ob. That's what they do. High risk doesn't mean impossible, it just means it's more work.
There is a difference between being a little down and having trouble coping, and depression. Depression is a disease that needs to be treated by a professional and it will not go away on its own. Been there, done that. Twice. If you suspect depression, please go get evaluated.
Being a little down and needing help coping, you've come to the right place! Vent with us when you need to. Ask your questions, understanding what happened to you and how your pm can help you will go a long way towards accepting. Feeling better also makes it easier to cope. If your dr is content to let you live your life out of breath and always tired, then it's time to find another dr. Some drs just don't know what to do with young patients. They don't get that many of us and they get stumped. A good dr will keep looking for answers rather than brush you off. Don't give up easily, keep pushing for a solution.
Good luck finding your answers. There are a lot of us here who've been there and we're happy to help you through it.
:)
by thatsillymanda - 2010-04-24 10:04:11
This is basically my exact story. I am 19 years old and have been dealing with all of this for 7 years all you can do us stay strong and keep going :) every day it'll get easier if you let it
Right on.
by qwerty - 2010-04-24 10:04:20
Bless your heart. Re-read what TracyE said. She is one person that is an inspiration to all of us here and her words of wisdom should be considered.
She has been there. I am much older and got my PM just this year. Didn't have kids with it. Just glad I got it so I can enjoy life and grandkids a little. I have never suffered with depression that I could not deal with until I got my PM. Now, sometimes, it is very challenging. I can rationalize that this is good, it gives me quality of life, but sometimes it still gets me down for no reason. Maybe I just realize how fleeting life can be. It is hard to be positive everyday, and that is where people like TracyE and this board come in. This is a great bunch of people who never judge. We have all been there and sometimes we just need to vent a little.
As for the tank top and scar... well, sweetheart, we all have scars. Every "scar" whether physicial or mental can either make you bitter or better. Our job is to make sure it is better. It is silly, but even at my age, when I put on a swim suit I WANT to look good. So, in my mind, I think about what I looked like 40 years ago, enhance it a little, and Poof, that is the way I "feel" I look. Attitude can conquer many of our scars.
I love TracyE's attitude that it does not slow her down and it is just part of who she is, but does not define her. We cannot all be THAT positive, but you are young and you have a sweet little boy who needs his mom. You shouldn't feel bad all the time, and you need to find a Dr who can help. One thing, take charge of your body. Make sure your Doctor, this one or another one, knows EVERYTHING. Sometimes we want to put on a Brave face and not let them know how bad we are feeling. This is their job and they don't Know how you are feeling if you are not specific and tell them. The more you can learn about your body and what is going on, the more the doctors are usually willing to talk to you.
In the mean time, until you get to feeling better, there are lots of special times you can have with that little boy. He needs to be held and loved. People used to say I was spoiling my youngest. I knew he would be my last baby, and sometimes, when he was asleep, I would just sit an hold him. It didn't hurt him a bit to be a little spoiled.
Hang in there, and let us know how you re doing.
TraceyE Say It All ~ ~
by Carolyn65 - 2010-04-24 11:04:32
I think a lot/most of us need to go back and re-read TraceyE comments every day. Sometimes, I go back & just read her "comments" for an inspiration.
So many people on the PM Club have so much knowledge. There are so many I thank for all the help they have given me in the less than a year I have been a PM Club member. Among the many, and for sure, not naming them all, I appreciate Smitty, Snitch, Inga, ElectricFrank, TraceyE, pacergirl and many, many others. Of course, without saying, we could never forget our wonderful/famous founder, Blake (Admin).
Always feel your PM Club is where you can turn to for answers, inspirations and some good ol' lovin' with a Big Bear Hug. You can even send "private messages" to individuals on this site. What a Blessing ~
Hang In There,
Carolyn G. in TEXAS ~ Spring IS Springing ~
Oh you sweet thing
by wenditt - 2010-04-24 11:04:33
I have been in your shoes....still am on some days...exactly how you describe it. I have a baby girl who is almost 2. Until recently I was afraid to be alone with her because I thought some thing might happen to me. And I'll admit there are days when I am more anxious then others. I am 8 months post implant and it's taken me a long time to get to the place where I am right now. I have lived in fear....when it feels like it's running through my veins....but I can do is tell you the path I went down to get better. I am proud of the path I had to take....as painful as it was, as up and down as it is....but I've been OK for a few days...even smiling...so something is working!
First-I got a second opinion, and third, had my PM interrogated WAY too many times and bugged the hell out of them until I was convinced that I was OK...that they didn't miss anything etc....that went on for about 4 months!
Then-I go see a psychologist who specializes in anxiety and panic disorder. I still see her. She helps me to rationalize my thinking, push out the bad "what if" thoughts. That's been the hardest work as sometimes she digs up a little more than I would prefer to deal with LOL but I know I will get to the finish line with her!
And Then-I see a psychiatrist. Who helped me with medication to allow me to "be available" for the therapy. Some people don't believe in these kind of medications or would rather do it the old fashion way but for me, I was so anxious, having back to back panic attacks, literally going crazy that I could not calm down enough to benefit from the therapy. So he helped with medicine so that I can rationalize and benefit from the theraputic work that needs to be done.
And always-I come here. I post when I am down, I reply when I am empathize, I post questions, I post answers if I can....this is an amazing supportive community.
Everyone needs to find their own path.....and I am sorry you are going through this. But try to find a counselor or therapist to talk to. Or ask your cardiologist for a another patients contact info that you can call and maybe meet in person....you could possible share stories and support eachother even more.
Best of luck to you...come back and let us know how you are doing.
HUGS-
Adjustment
by musser75 - 2010-04-25 06:04:26
Hi,
As i have read your story, the first thing which comes to my mind is that you have got pacemaker-syndrome. Let me let this way: There are two small chambers ( atrium or atria [pl.]) and two large chambers ( ventricle). The hearts has an unique electrical system. There is a main electricle centre in the roof of the right atrium which stimulates your heart. So the heart gets contracted you feel your pulse. If your are resting, your pulse is about 60 per min. If you are running after your kid, it goes up to 120 per min. The electrical wave from this main centre is conducted through all of your heart via special tissues. You can assume this tissues all electric wires in your heart. Some times there is a short circuit between these wires which causes unexpected high heart rate. Your history suugests me that you had got AVNRT ( av-nodal-reentry-tachhycardia). ABlation is a way to cure it but should be reserved for patients who experience 5-6 attacks per month. There is always a risk ( a small one) of a third degree heart block. Indeed, you see some clues during electrophysiology and do not pergorm the traditional ablation. Cryo ablation ( freezing this short circuit) is an alternative for those like you.
Your exercise intolerance: There are two explanations for it. First one is your heart rate do not go up while exercise. This can easly diagnosed by putting you on a treadmill and letting you walk. If the p waves on the ecg ( p waves show the electrical activity of the atria) do not become fast, the rate repsonse function on the pacemaker should be switched on. There are some fine tuning options regarding rate response function, these should be done after repeated treamill exercise observations. The second possibilty is that av-timing in your pacemaker is not just proper for your needs. Under echocariographic surveillance, av timing should be optimized. and rate adaptive av timing shoul be switched on too, so during higher rates the av interval gets shorter. With these these adjustments, I am sure you will feel really better.
questions
by Tracey_E - 2010-04-25 08:04:01
Is the only thing wrong with your heart now 3rd degree block? Because if that's the case and your sinus node is working normally, they should easily be able to get you feeling better. I was born with 3rd degree block. There have been a few times over the years when I had symptoms and we had to tinker with the settings, but each time I've ended up feeling 100% and full of energy again. One thing that has helped was doing a stress test, the doc and St Judes rep watching what my heart does on exertion. I told them when I start to feel bad, they were able to look at their readings and see what was happening, then program the pm to keep it from happening again.
I have St Judes also, this is my 4th one. I've never had more than 7 yrs out of a battery. One thing I've been very happy with is their reps. I've had the same one since I got my first one and he ROCKS! He has two people under him now and all three of them are just awesome. When I've run into the occasional problem, they've gone above and beyond to get me 100% again. It's a good company.
It sounds like your new dr is a lot more on the ball! Nothing like that first moron. I hope he is able to get you feeling good soon.
About your scar
by wenditt - 2010-04-25 09:04:26
I was thinking about you yesterday when I was leaving the dr's office. There was a woman behind me with a walker trying to exit right behind me. I asked her if I could help or at least hold the door. She had a hat on so it was hard to see her face. Anyway-I held the door and walked out and I asked her if I could help her to her car or if she needed anything else. She lifted her head....and I could see her face. She was striking! Probably the most beautiful face I had ever seen! She began to tell me that she didn't have a car because she couldn't drive. That she was hit head on in a car collision 20 years ago. That she was there at the office to manage her daily pain. It was only then that I noticed she had scars on her neck, on her hands, on her arms. But her face was un-touched by this horrible accident. She and I spoke for a few minutes and I can tell you that the entire time we were looking each other in the eyes. That's what people do when they talk. We look at each other. People may look at your site if you mention it but for the most part....they won't even notice...unless you tell them...as this woman did with me.
This woman wore her scars with strength and fortitude. She said that even with all her misfortunes she was happy to be alive....that God has blessed her. Imagine that!
I left the encounter truly enlightened. She taught me a few things actually. And for you....wear your scar with pride. I can tell you I have a big scar on my forehead from falling off my bike as a kid..an no one notices. I have a scar on my knee from crashing playing hop scotch. This too...is just another scar that one day you won't even notice.
Hope that helped. Enjoy your baby!
You know you're wired when...
Microwave ovens make you spark.
Member Quotes
In fact after the final "tweaks" of my pacemaker programming at the one year check up it is working so well that I forget I have it.
do not hesitate to ask for support
by Chrissie2116 - 2010-04-24 02:04:10
As you may certainly read in this site, we almost All have ou ups and downs and the site can always help you .
Nevertheless, as Tracey and Wenditt say, this will not be enough for you and do not hesitate to see a psychologist / psychiatrist and have some pills to help you with if necessary.
I am almost 3 months after my PM implant, still short of breath and just want to recover my full energy ... I had also hard times and still have - even if I always try to keep the "positive attitude" - and the doctors helped and are still helping me.
You really need to speak to somebody who will understand you , it helps a lot.
All the best to you and keep us posted,
take care, Chrissie