Shortness of breath and chest pains

[loghousegal]

Two years after afib started I slipped into persistent afib and had an ablation. 60% of the way through the ablation I developed pericardial effusion and the ablation stopped and a drainage tube was placed in my heart. A couple of weeks later I developed chest pain from an autoimmune reaction called Dresslers Syndrome resulting from the ablation. Last week I was put on Tikosyn. I still have SOB and chest pain but no Afib. I wonder if I will ever be normal again. My heart is structurally sound. The EP told me to gradually increase my exercise and I am trying to lose weight. I am not obese and do not have high blood pressure. Suggestions how I can get better and resume my normally active life?

[DawnTX]

I am sorry you went through so much during your ablation. As you probably know, a fib is not curable, but it can get quiet. Do they say why you have the chest pains? It takes quite a while to heal even after a normal ablation let alone what you went through so maybe they can tell you is that what’s going on? I am prone to pericarditis. I have now had a three times it seems to be my weak point whether I am having a procedure or when I got Covid it seems to hit there. It was caught. I was medicated with one pill a day for 30 days by an off treatment and I was fine again. As far as how you are going to be in the future if you do the things, the doctor suggest I think you have a good chance of living your normal life, just don’t let a fib run your life because it will try when it gets into your head don’t let it.

a year ago I didn’t know if I was even going to still be here in life. Today is my Hart’s birthday I call it lol I got a pacemaker just for me with wiring and it has been a very long year at times. I won’t even go back to after my first and second ablation my first and second cardioversions and all the different medications so you are going to have changes most likely knowing that should make you feel better because I think we all go through it and when you know it’s almost normal You can feel less upset over it. Healing takes time. I know they call it the blanking. And people talk about X number of weeks or months but that’s not really true last year I was told it could take up to a year to heal, and it pretty much did , I could say maybe 10 months. It wasn’t always awful. There were lots of times I completely forget about a fib, etc.. once in a while, my flutter comes back and yes, even with a pacemaker you will feel flutter and a fib. I have a typical flutter plus heart failure. Those have both improved. If you told me this time last year that I was going to say what I will say to you, I would’ve thought you were crazy

I feel almost normal the way I used to maybe even better because I did not know my heart was so unhealthy so waves I felt might have been from that and I didn’t know. The one thing I’ve lost is stamina I don’t have what I had. I also need to remember I’m a few years older now, but just like if you go to the gym every day and you stop because you are sick for a week or two. You will find your stamina has really dropped and it’s hard to get back, so imagine a couple of years, of not been back to the gym I miss the things I had been able to do the walks that I could do for miles. I am grateful that I can walk. A year ago just to stand to get off the couch I had crushing chest pain could not breathe. Didn’t even have it in me to cry. Now I can do things I used to be able to do in the morning including taking my dog out. I’m not about to go out to play frisbee or join cirque de Soleil, but I am grateful and blessed to be out there, watching my dog running around happy again and to be able to be with him.

I don’t know what the things were that you normally did. I am actually younger than you am 71 and until this hit I used to say I was 35 in my head and I really felt it. I’m getting back maybe to 50 in my head lol. You are gonna be on an emotional roller coaster, but you’re gonna be OK if you let yourself be. Don’t listen to everybody because people think you either can snap out of this like depression or suddenly you’re better. I mentioned previously the cousin I live with is always asking me how I’m feeling do I feel better? It doesn’t work that way. If you had your appendix out would you feel better in five minutes? People try to help but they really don’t get it and I don’t think we got it either until we had a.Fib. The American Heart association started a campaign on TV etc. a couple of years ago called no time to wait and it’s about a fib. Even when I was told what I had it meant nothing to me educate yourself ask questions of your doctor again you will feel better the unknown can be scary. My doctor is a great teacher. He calls himself the electrician. Trouble with our electrical wiring. My Cardiologist is the plumber. He takes care of the other parts of the heart. They are very much specialist, especially your EP. They not only have to know the body. They have to be up on everything when it comes to computer, engineering, software, etc. everything works handed hand and their job, including The equipment they use. I am so impressed that I have someone that’s special taking care of me the way he has.

Listen to your doctors do the right thing and your life might be better than it was. I know why you appreciate mine much more now.

[loghousegal in reply to DawnTX]

DawnTX, thank you for giving me encouragement! In my 60's I ran four marathons and now I can't walk a mile. So I could really relate to what you say. I am not a patient person when it comes to my health. I am trying to slowly do more each day. The chest pains are getting better, at least for now. I fear they will return. I still cannot sleep on my right side. I also found out I am anemic that could add to my shortness of breath and high pulse rate. At least this is something that can be cured! I love my regular doctor and the EP is good. I don't care much for the cardiologist. There are times when I wonder if I will live to see another birthday but my doctor says I will return to my old self in time. I just have to plod on. You are right about people not understanding. I had my ablation in December with the effusion and they think I should be over it. I put on a cheery face and pretend all is well. So, again, thank you for your understanding. I wish you well in your journey.

[DawnTX in reply to loghousegal]

You sound like me you probably don’t like things you cannot control. Walking was my way of life growing up in the Boston area especially in the city for over 20 years. Everything was walking I could walk from one side of Boston to the other, and enjoyed it. I never had a car in the city. It’s a big headache, and sometimes the trains and buses are just too crowded or not working so I walked. Losing that ability is one of the things I really am still upset over but I am happy that I can walk at all. They say except the things you cannot change change what you can and know the difference and that’s important. You can find new joy and things that you can do especially if you lost the ability for any length of time. Lol I didn’t know I would miss standing at the sink washing dishes. It’s not that I like washing them, but it was being able to.

Yes people need to realize we are not cars. You can’t fix our brakes and suddenly we are brand new again. The body is complex and healing takes time. No one can tell you how long your particular body is going to need. and sometimes it feels like it’s not happening at all but then one day you will realize I feel pretty good. That’s how I have become the last couple of months. I did get a flu bug or something around the holidays and it has dragged me out but it has nothing to do with my heart. That’s something my EP taught me. Also every time we don’t feel right it doesn’t mean it’s our heart. there’s lots of other parts in our body everything from a tooth to a fingernail to whatever. I think we are very prone to forget that and blame everything on our heart and we have to change our way of thinking

I also think that what you did previously like running marathons, give you a leg up because I think of all of that like building blocks and even though we don’t have the stamina those blocks are still in there a bit. I used to love to work out but swimming, especially because I was living in Florida gave me the happiest moments, and I was in that water all the time I had been blessed when I had procedures to heal quickly even my cataracts it was almost miraculous the next day I could see. Those of us who did not abuse ourselves, might have an edge on others. I don’t know I never compared myself to other people, but I never thought it was all that hard, except for the one procedure I had when I first came to Texas. It wasn’t the procedure as much as the doctor I don’t think that is how I ended up with the doctor. I have now unfortunately six months later and I want to impress on everyone don’t wait get another doctor ASAP. There is no time to wait as the American Heart Association tells us about afib. . It almost cost me my life.

I think you’re gonna do great because you understand it’s going to take time and unfortunately yes you’re going to have limits. If you’re not sure about doing something talk to your doctor first. I started out slow walking and just increased my pace and distance my stamina is still shot Laar month after the doctor I went to Walmart. we have a super Walmart. It’s huge. I spent three hours in there walking and walking just because I could. Finally I realized I needed to go home and wow I was Exhausted. I did sleep like a log that night. Lol. it’s just really strange to think how many miles I could walk and now grocery shopping does me in but I will be back there lol

Please let us know how you’re doing as you progress. a fib is not going to kill you. Your doctor probably told you that if you ignore certain things you can get into other types of trouble with your heart so don’t do that.

EP and Cardiologist are strange just like other surgeons. They are not your GP the guy that sees patients every day, etc. I am the same way about Cardiologist, but the first time he met me he wasted no time getting me to the EP and because of him. I am here now. My EP is very personable. At least I find him that way, but he is a new breed of doctor I think and I hope there’s a lot more of him coming out.

My Cardiologist, sometimes almost mumbles very low-key sometimes I feel he has no clue who I am. But then we go into the office to discuss everything after he does my ECG etc. and surprisingly he’s right on the money about everything

Just remember we have our doctors to fix us not to have best friends with bubbly personalities. That would be my GP, who greets me with a hug.

As long as he listens and he addresses your fears, I would say hold onto him if he doesn’t then maybe look elsewhere. I was blessed to have a Cardiologist and EP who work terrific as a team because your doctors really need to interact with each other

I am a straight shooter I shoot from the hip so like my cardiologist it’s not always great, but I’m not gonna tell you it’s gonna be easy. I realize now I was lucky my first year and a half. I had two ablations and in between everything felt pretty normal. It didn’t feel like the AFIB I got to know later that’s the problem with all of this. It has no consistency. You can have a great year or a great week and then feel like garbage.that’s reality and don’t always blame something you’ve done for why it acts up I am convinced a fib is a horrible little beast he remindsof the creature on the Mucinex cough syrup add L O L I’m very visual. He pretty much does what he wants to do. If you find triggers like I did, then don’t do them.

The three I can absolutelySay is over eating no matter how good it is alcohol no matter how weak it is and stress the hardest one to fight. Do your best.. I just had my first class of iced down. Watered down sangria lol since all of this started. It did not bother me at all and I can’t say that I’m craving it. Lol. Stress and anxiety are tougher. You sound like you can handle it but if not Get help from your doctor. My EP told me straight out my needed to be addressed more. I had meds to take as needed. He told me he believed I needed them more than I thought I did. I relayed that to my doctor now I take two pills a day for it ,

Mind-body connection is very real as I’ve stated the last few months I feel normal I can say I feel good the hardest thing I’m still dealing with is fatigue at times I have a feeling though that is because of medication which all seem to have some type of side effect

Good to yourself and if you need to tell people to stop asking you if you’re better now etc. tell them like I said we’re not an old car that they replace a part and it’s brand new. We are human.

[loghousegal in reply to DawnTX]

Yes, we are very much alike! As a kid I would walk a mile to school and back home and think nothing of it. In fact I enjoyed it. Today is a really good day. I haven't had afib for awhile and the pain in my gluts seems better. My worst symptom is the SOB and cough and, of course, fatique. On the walk I got up to 128 today. The EP has ordered a sleep apnea test for me. I live alone and have no idea if I snore. I just know I have a hard time falling asleep at night and after breakfast I have to take a nap. I never used to do that. I haven't gone back to golf yet but hope to do so soon if the weather is good and I continue feeling this good. I worry that this is just temporary and the Afib will come back. I like your description of Afib being the Mucinex cough monster. Yesterday I had labs done and I can see them on the patient portal. My hemoglobin and hematocrit were both low. If I am anemic that would explain some of my high pulse rate. I see my GP next week. Most people don't believe that I am 85. I have never smoked or drunk to excess. My last drink was in October. I do miss having wine with a good meal.

At times I think I need to see a counselor to help me handle all the anxiety that this condition has brought on. I have always thought of myself as a healthy person. I also decided that I need to focus on what I can do and not what I can no longer do. I am blessed to have a boy/man friend who is very positive and keeps me laughing. He is there to take me to the ER or hospital, visit me, pick me up, dog sit, and do what every I need. We have been close friends for 12 years. Both of our spouses have died and neither of us want to marry. We like our independence.

I hope you continue to have good days - and weeks that grown into months.

[DawnTX in reply to loghousegal]

You have a great attitude it’s going to be your best friend through this. Having your man friend supporting you is also very important and helpful. Everyone needs someone at sometime.

I was ordered to have a sleep apnea test. I haven’t done it yet and yes I do know I snore not like I used to but yes you can die from it. My friends son passed in his recliner watching TV and he dozed off. It also contributes to a fib acting up.

One of the strangest things that I have had since I got my pacemaker, the end of stomach problems. I have no idea why I have suffered for years with it. It didn’t matter what I ate it could be a glass of water that I drank. I don’t understand and I haven’t really asked about it yet, but I really have not had it since my procedure even before the AV node was ablated wo weeks after my pacemaker was inserted.

I am sharing I want to give and get people to ask questions and realize it’s not curable it can be dealt with.

thank you for your kind words

[loghousegal in reply to DawnTX]

I'll let you know what the sleep apnea test is like. I am not looking forward to it. I have a large hiatal hernia and suspect that it contributes to my Afib. No one seems concerned about it. I know eating small meals is best but I often find that difficult. I have learned to stay away from spicy foods and eat early in the evening.

[loghousegal]

I had a hard time finding this post. I wanted to share with you my sleep test experience which was last night. I arrived at 8:00 PM and was greeted by the therapist who was with me all night. He was very nice and experienced. He led me to a comfortable room with an attached bath. There was a queen size bed with three pillows and he brought me more blankets. I had tons of paperwork to fill out while he was working with a young boy. After I finished the paperwork I changed into my pajamas and climbed into bed and read. He finally returned at 9:45 and hooked me up. This consisted of a band around my chest and another around my stomach. ECG leads on my chest. A sensor on each leg and all kinds of sensors on my head. Also a blood oxygen monitor on my finger. There was a camera on the ceiling that could watch me while I slept and a microphone so I could call him at any time. I tried sleeping on my back and on both sides. Nothing worked. Around midnight he came in to resecure some sensors on my head. He asked me if I wanted to use the rest room which I did. He came in a second time later. I asked him if I would fail the test if I didn't sleep. He told me that I was sleeping some. That was news to me. Anyway I finally fell asleep and he woke me at 5:30 and took all the wiring off. I could stay there and sleep if I wanted or go home. I chose to go home and take a shower and go to bed. IF there is a problem a sleep doctor will call me and set up an appointment and we go from there. So that is it. Other than when I got home I developed chest pains. They are now gone. I think I have been having short bursts of Afib but it could be ectopics. If you have any questions just ask. It was not a bad experience. I just wish I could fall asleep quicker.