Doctor Says I have Atrial Fibrillation...What's Next?

[tobagotwo]

I think it's because Postpericardiotomy Syndrome (PPS) is a mouthful, and saying it also entails having to explain it. It's a ten-minute term, at minimum. So, it's a correct name, but not a popular one, even among professionals.

One way to determine frequency of use: Googling for Postpericardiotomy Syndrome picks up 11,200 entries. Does that make it sound like it's in common use? Well, yes, it does. That is, until you see that Cardiac Tamponade engenders 208,000 responses. Pericarditis lines up 658,000 sources. Open Heart Surgery lists 1,300,000 hits. 11,200 entries in the WWW is a minute amount. Postpericardiotomy Syndrome hasn't even made the Wikipedia.

So, it's a relatively unused term.

However, if you look through past postings of people with post-surgical issues, you'll see that many here do recognize the syndrome, and the various courses that it sometimes takes. There is a lot of good information about post-surgical problems on this site.

It's to be noted that this site could help bring the term Postpericardiotomy Syndrome into the larger world, should we decide we want to use it regularly. It might be easier to call it PPS most of the time, but - again - we'll always be explaining it. Thoughts, anyone?

Best wishes,

 

[Ross]

Afib nailed me in my about my 8th week after my second surgery. Very unsettling feeling. I was still in the hospital, just released from CSICU to rehab. Think it was my second night in rehab that it started. They tried a couple medications and they didn't work. They were going to take me and cardiovert me, but the next morning, it was gone and back to normal. Haven't had another round since.

 

[Curtsmum]

Lorie, so sorry you are having problems after surgery, hope you can get it resolved soon, best of luck.

 

[Marguerite53]

However, if you look through past postings of people with post-surgical issues, you'll see that many here do recognize the syndrome, and the various courses that it sometimes takes. There is a lot of good information about post-surgical problems on this site.

It's to be noted that this site could help bring the term Postpericardiotomy Syndrome into the larger world, should we decide we want to use it regularly. It might be easier to call it PPS most of the time, but - again - we'll always be explaining it. Thoughts, anyone?

Best wishes,

Well, once Lorie is over it (and she will be) maybe she could start a thread with it as the thread title and then maybe Lorie can post her experience and share all the information she has gleaned with her searching the interent and speaking with professionals? Eh, Lorie? Your wonderfully informative threads have added so much to this forum already. Perhaps you would be willing to start a thread about your success (when you get there) in overcoming this obstacle, and in sharing whatever else will be helpful for others.


But in the meantime, Lorie, I hope you can find the right avenue for success with your recovery. I did not understand Dr. Raissi to say that you actually had A-fib. It could just be benign PVC's. I had benign PVC's with a vengeance just about the same time post op. They upped my beta blocker and I was okay. ALSO. Has anyone checked your iron count. Could you be ANEMIC?? Some of those same symptoms could be attributed to iron deficiency, couldn't they?

Wishing you well!!! Hang in there. You'll have it figured out soon. This is a huge undertaking and sometimes we just have to put up with some of the glitches in recovery.

Marguerite

 

[harleygirl528]

Does anyone think that this term, postpericardiotomy syndrome, night be interchangeable with the more used term "Dressler's Syndrome?" It sounds like they are the same thing to me.

I did talk to Dr. Raissi this morning and I am off to the local ER for another rounds of tests to include Echo which specific measurements of fluid volume and location, blood work, etc. He is calling the ER ahead of time just to make sure that specific tests are ordered. Apparently this will determine a lot of things including whether I need chest tubes to drain the fluid. My symptoms certainly line up with having some type of problems with fluid since my bp has been running so low, 81/50 this morning, but thankfully my pulse is lower too at 66. Dr. Raissi says that low bp can be indicative of fluid around the heart. I am only having the testing done here locally. If it is determined that I have to have anything invasive then I will be on the next flight to Los Angeles.
Funny thing is, I generally tend to feel a lot worse in the afternoon and evening. That is when the aches and pains are the worst and the low-grade fever sets in. I just want to get this ove with today so I can get some answers and start to feel better. This time we are going to insist on getting the echo and x-rays downloaded on a disc so that Dr. Raissi himself can review. We will also get copies of the echo and x-rays from my visit 10 days ago for review.

I will keep you all updated! Thanks, as always, for the ongoing support and encouragment!

 

[Ross]

I do believe your right on the terms. Don't know for fact, but I think so too.

I'm glad your Docs intervening. Yes your blood pressure is becoming a concern.

 

[ruth]

Lorie,

So sorry to hear you are going through all this. I went into AFib at about 3 weeks out and stayed in it for about 10 weeks when I had to be shocked out of it. I don't recommend it but I lived through it and if that's how it goes for you then you will too. It is my (naive) understanding that AFlutter involves a rapid HR where AFib does not. In both cases the Atrium is quivering and not contracting in rhythm with the Ventricle. Knock on wood I've been in NSR for 11 months now.

I *had* to curtail my exercise and my hopes for a speedy recovery but even those who are slow and steady can win the race too. After the AFib I got to exercise and get my strength back. It took time but it happened.

I wish you all the best Lorie.

Peace,
Ruth

 

[harleygirl528]

I do have Dressler's Syndrome

I do have Dressler's Syndrome

Finally back from the ER and a ton of lab tests, chest x-ray and echo. I do have a small pericardial effusion and pleural effusion as well. In addition, a few of my blood tests came back abnormal as well, all indicative of postpericardiotomy (AKA Dressler's) syndrome. It really sucks because primarily I just feel really bad, terrible joint pain, body aches, painful breathing, chest pain, etc. and it really has slowed down my progress. The only thing I can really do about it is keep taking the Motrin and pain pills and bedrest so I guess no more 2 miles walks for me. The good news is the percardial effusion is small and is not in the category of tamponade so hopefully that means my body will just resolve on its own, in time that is. Dr. Raissi called the ER ahead of time and told them specifically what tests to do and the ER doctor called him a couple of times to update. I will talk to Dr. Raissi tomorrow afternoon as I didn't want to bother him so late as I know he has surgery first thing in the morning. He is so wonderful. I was supposed to start cardiac rehab soon but looks like I will be postponing that until I get over this issue. Anyone else have any experience with this Dressler's syndrome? Feels like a terrible case of the flu with very painful breathing
I know that the blood test that measures for congetive heart failure has a normal range of 100 or lower and mine was 106, slightly elevated. Also the test for inflammation came back abnormal as well as the test for blood clots so I will look forward to a more thorough explanation from Dr. Raissi.
Thanks guys.....I'm gonna go crash....that visit to the ER wore me out! But, very relieved to know I dont need any invasive intervention right now.

 

[Ross]

Not with Dresslers specifically, but with my lung disease, I have many periods of effusion and it sucks. Every one of mine land me in ICU, so you know how bad it gets for me.

 

[Tom F.]

Girl, all I can say is hang in there. It sucks to hit speedbumps post-op, but some of us do. Just give it time.

 

[harleygirl528]

It has come to my attention that my posting about my complications post-op has caused some concern for those in the "waiting room" and I just felt I needed to add this clarification. This is from my reply to another post but felt it might also be appropriate under this thread. Just to clarify where I stand on all these "issues.

Just felt I should chime in since my post-op complications seem to be a issue. I hope I haven't in any way tried to dramatize or make what I am going through seem worse than it is. Primarily, I have posted to seek input from others who have gone through similar issues and to help those of you in the "waiting room" to understand the potential issues.
Just to clarify....I went into this surgery in a very good frame of mine, relaxed and at peace with everything. In fact, I felt and still feel an incredible sense of gratitude that I was someone who had an aortic aneurysm (potentially fatal) but that I was given the opportunity to fix it and thus live (unlike thousands of others every year). I practiced meditation and deep relaxation techniques daily and did a lot of reading and research and felt very good.
That being said, I don't think there is anything you can do to totally avoid the potential issues that can crop up. OHS is an extremely invasive procedure and our bodies can react to this in a myriad of ways. I am sure Wayne didn't do anything wrong to cause his tamponade and I can't really say I have done anything to cause my body's autoimmune response to kick in and cause this "dressler's syndrome." The important this is that I am doing what I can now to deal with it, trying to stay positive and realize that it is just temporary and I will get better. I have done absolutely everything in my power to stay healthy and to promote healing from eating a very healthy diet, drinking lots of water, walking, deep breathing, etc. I have stayed informed and on top of my medical condition and tried to react appropriately to each situation.
I think it would be naieve to think that you can avoid post-operative complications by doing or not doing anything. Sure you can help yourself along by following all your discharge instructions (which I have done precisely) but that still isn't a guarantee. I don't feel "unlucky" at all....I still feel extremely lucky to have found a surgeon with the skill to repair a very compicated aortic aneurysm that extended into my arch, involved total circulatory arrest, and to have the cognitive abilities to begin posting coherently just two days after this surgery. I have so much to be thankful for and what I am going through now is just a little "bump" in the road. I am very, very lucky indeed...and I will be better soon! Just my two cents.....

 

[marie]

Lorie
I for one appreciate and follow all of your posts. I am exactly one week behind you and I've had a couple of bumps myself just not as many as you. I think most of us understand that you were looking for some input as to what you were going through. You've also been very helpful to anyone that post. Your input both before and after your sugery has been appreciated. So please continue to keep us posted. I hope things begin to go a little better for you. You're in my thoughts and prayers.
Earline

 

[bbb]

Lorie,

You will be in my thoughts and prayers and I just know your strong body will help you resolve this unfortunate bump. Please do just rest. I spent so much of my time resting even when I didn't want to. Even now that I am feeling well and back to work, I want to do everything RIGHT NOW! I have to constantly remind myself to take it easy, esp. since I have two small demanding children. It is a struggle once you feel better, and I know now you have no choice, but do continue to rest alot during the recovery.

Thanks for keeping us posted on how you are recovering, so we can send all our good energy your way!

All the best, Betsy

 

[aussiemember]

Lorie - speaking from the waiting room - I'm glad you are sharing your story - please continue to do so and I wish you all the best and hope that things start to improve for you soon. It's great your surgeon has been so caring and on top of things for you - Jeanne

 

[JudithD23]

Lorie - speaking from the waiting room - I'm glad you are sharing your story - please continue to do so and I wish you all the best and hope that things start to improve for you soon. It's great your surgeon has been so caring and on top of things for you - Jeanne

Ditto
If you weren't posting and asking questions to your issues, in the hope of finding potential answers, the forum wouldn't be serving its purpose. And we're learning along the way. Good luck and good healing.

Judith

 

[Marguerite53]

You are awesome, Lorie. We love ya!!

Judith....hang in there. Your husband is one lucky guy....he's got you!!

Marguerite

 

[harleygirl528]

Thanks to everyone for your encouragement. You guys really keep me going and hopeful that although I am having a few minor issues this is just a temporary setback. My sincerest desire going through all of this was that I could be helpful to others facing the same thing, to pay back some of the support and encouragement that I received myself. Being realistic about the possibilites is important but honestly I was one of those who only visualized the most positive outcomes....and that positive outcome is still a reality for me....I am alive and here...that is positive! Having to deal with a few "bumps along the road" (I love that term...seems so approriate since this really is a journey) is just part of the whole thing. Yes, there are some who experience more than others but maybe we just had some lessons to learn....like patience....God is teaching me patience!!! I am learning that I can't power through everything and that sometimes you just have to sit back, rest and let healing and recovery take place.
Judith, your husband really is a lucky man to have you by his side and if I can make anything easier or answer any questions for you then my mission has been accomplished. I am sorry if I came off a little strong but I just wanted to clarify that even if you do everything right, complications can and do occur.
Thanks everyone...and as a footnote...feeling a little better today!!

 

[brd]

Lorie, I am in the waiting room (getting really close though) and I want to say that your posts lately have only made me sorry you were having such trouble. I have followed your whole course and was glad when you did so well immediately. In no way have I found your recent posts either discouraging or frightening. On the contrary.......the message to me has been that complications happen and we get through them. You will too and I thank you for being so willing, even when you are feeling so bad, to keep writing and letting us know how it's going. Please continue to post.

Thoughts and prayers going your way.

Barbara

 

[JudithD23]

This is such a good group of folks. We've just come back from dinner and I'm on Tom's laptop. He counts on me to ask all the questions to you guys and report back to him. I think he'll probably get on once he's post surgery, this part is a little too nerve wracking for him.

Tomorrow at Stanford Tom has his 64 slice CT and a regular echo, not the TTE that I thought he was going to have.

And then we may go back to Mercy, which may still be Tom's preference - ugh! I'm hoping he'll fall in love with Miller and Miller will guarantee that he'll do the surgery, or Miller will think Morris is great.

I hope you all have a good night with lots of healing for everyone.

Judith