constrictive pericarditis and A-fib correlation??

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Schwaben
New Member


Date Joined Jun 2013
Total Posts : 8
   Posted 6/7/2013 6:56 PM (GMT -7)   
Hello, I am new to this forum and have found some great information. I have a couple questions I would like to pose to the community. I am a 51 year old male and had paricarditis about 13 years ago. Shortly after that my heart started to skip a beat every once in a while. Had it checked out and Doctor said it was nothing to worry about. Fast forward 13 years. In the past 6 months my heart went into A-fib 3 times. It is currently under control with medication. Last 3 months I have been feeling tired and short of breathe when engaging in minimal activity. Been to 3 cardiologists before being diagnosed with constrictive pericarditis. Here are my questions.

Has anyone else developed A-fib around the time they were diagnosed with constrictive pericarditis?
Can constrictive pericarditis cause the A-fib?
Can the stripping of the pericardium help reduce the likelihood of going into A-fib again?

Anyone personal experiences would be appreciated. Thanks. Fred

john-o
New Member


Date Joined May 2012
Total Posts : 1
   Posted 6/18/2013 2:48 AM (GMT -7)   
Hello Fred,

first: please excuse me, if there are mistakes in my english, I am from Germany and not used to write in english.

I am now 63 years old, male. about three years ago I was diagnosed - purely by chance - with pericarditis constrictiva. Before that I was at first diagnosed with A-Fib.

Since several years I showed the same symptoms as You told, tiredness and shortness of breathe - becoming worser every year. Ascites, pleural effusion and so on.

There was a test with cardiac catheter, after that the diagnosis 'pericarditis constrictiva' was confirmed.

'Pericarditis constrictiva' is in Germany (today) a merely rare disease. In former times, up to the second world war and some years after that, it was often a sequence of a tuberculosis disease.

I believe it was in my case a tuberculosis disease which I had at the age of about 9 years. So I lived with 'pericarditis constrictiva' about 50 years...

That would be a long story.

After the confirmed diagnosis I talked to several cardiologists; they all told me, the pericardiectomy had to be done, otherwise my health would decline in some ten years until death.

So the pericardiectomy was done in october 2010, in the surgical hospital of the university of Heidelberg.

about 2,5 years after the surgery I am doing nearly well, but it took time, and there were some setbacks in my condition. One of the cardiologists had told me - before surgery - that it would take three years to recover, and today I have to say: he was right. I learned to be patient. May be that it depends on the age the patient has at the time of the surgery.

Concerning the surgery I would propose to read the thread of 'little cowboy' in this forum - very good and detailed information.

Concerning the A-fib: my doctor told me that this would stay - after a long lasting A-fib disease, which may be initiated by the 'pericarditis constrictiva' there is not much hope of healing - I will have medication for a long time or for lifetime.

Sorry that I cannot tell more to the A-fib - concerning my case, it was merely a side effect... (running around the whole life on 70 % heart performance... not too funny...)

I believe, You should find a doctor which is really experienced concerning 'pericarditis constrictiva'.

May be, that is as difficult as it is in Germany. I hope you find some information in this forum, there are several threads to this subject (some of them closed, but I think You can still read them).

All the best for You,
John-O

Schwaben
New Member


Date Joined Jun 2013
Total Posts : 8
   Posted 8/27/2013 7:47 PM (GMT -7)   
John-O,

Sorry for taking so long to respond back and thank you for sharing your experiance. I was born in the USA but my parents are folks Deutsch. (Donauschwaben) Ich kann Deutsch sprechen und verstehen, aber nicht immer perfekt. Es geht, wenn es muss

SInce my last post I have been told by 2 doctors at the Cleveland Clinic that I should have a pericardiectomy. The problem is that since they prescribed be 2 different diuretics (Water pills) I feel much much better. The sergoen still suggests having the surgery. I am very hesitant. I have been told the diuretics are only a short term solution and that there are negative affects to taking dietetics as a long term maintenance drug. At this point I would like to get a second opinion and am looking for a doctor in the states that specializes in this condition.

Hope you are doing well.

aufwiedersehen

Fred

SouthernAllStars
Regular Member


Date Joined Jan 2013
Total Posts : 30
   Posted 8/28/2013 5:56 AM (GMT -7)   
Hello Schawben I do not have constrictive pericarditis yet but I am getting there since my pericarditis has been chronic for a year. I feel for you and I am also thinking about the future.

I am currently on NSAIDs which seem to work well but give me some serious sides so next would be immunosupressants.

I've been researching about the surgery too and there's little info out there on this stuff even on the net "Who the best surgeon" "what should one do for the surgery" "What to do to make sure you have a succesful surgery", etc.

But I've found a VERY VERY good friend on this site hes very nice and open to anybody who wants help in this condition. He has pretty much traveled the USA to talk to experts and all surgeons etc. He could give you some info on that. I don't know if he'll be fine with me posting his info here so contact me at my email (click my name) and I'll give you his info or maybe I can ask him questions for you.

This is a very big decision man and you need to make sure you choose the right people.

Schwaben
New Member


Date Joined Jun 2013
Total Posts : 8
   Posted 8/28/2013 8:33 AM (GMT -7)   
Let's hope your pericarditis does not become constrictive pericarditis. I do not believe that it is a foregone conclusion that it will.

I had pericarditis about 13 years ago but was just recently diagnosed with CP. Before i started taking the diuretics I was tired and got winded quickly which was not normal for me. After taking the diuretcis I feel much better but the surgeon is still recommending the surgery. There are quite a few studies on the web that look at the mortality rate of this surgery and your long term life expectancy after the surgery. It's not pretty. The good new is that I fall into the best category. My CP is not caused by a previous surgery, radiation, cancer, TB, etc.... It just happened. I'm 51 and in otherwise good health. As the surgeon said to me, "You are the perfect candidate for this surgery" Easy for him to say. LOL. He said i have a moderate case and it is not an emergency situation so I have some time to think about it. Well, I'm thinking I want a second opinion but just don't know where to go. I need a heavy hitter that sees this stuff all the time. A real specialist in this area. There are not that many doctors our there that can say that. It is a fairly rare condition. I live in Cleveland and my surgeon is the Chief of staff at the Cleveland Clinic. He is the top dog at he number one heart hospital in the country. That said, I still want a second opinion. It's my body they want to open up and I want to make sure it's the BEST thing for me to do. I will contact you by email for the info on your friend.

Thanks

Schwaben

stkitt
Forum Moderator


Date Joined Apr 2007
Total Posts : 32602
   Posted 8/28/2013 8:57 AM (GMT -7)   
Fred,
 
Please check out this link:
 
http://www.cleveland.com/healthfit/index.ssf/2013/07/cleveland_clinic_named_no_1_he.html
~~Kitt~~
Moderator: Anxiety, Osteoarthritis,
GERD/Heartburn and Heart/Cardiovascular Disease.



"She Stood in the Storm & When the Wind Did Not Blow Her Away, She Adjusted Her Sails."

Schwaben
New Member


Date Joined Jun 2013
Total Posts : 8
   Posted 8/28/2013 9:15 AM (GMT -7)   
Kitt,

Thanks for the link. The Doctor from CC that they quoted is the surgeon that would perform my operation. Dr. Lytle. I know I am in good hands but it's still scary stuff and I want to make sure.

Fred

SouthernAllStars
Regular Member


Date Joined Jan 2013
Total Posts : 30
   Posted 8/28/2013 12:32 PM (GMT -7)   
Hi Schwaben I've been to the Clinic once and it's definitely number one in the country. People from all over the country go there. You are in good and best hands.

I'm 100% positive mine will go to constrictive because nothing really relieves all the pain so there is always inflammation in the pericardium unless of course I find something that does. However I had this inflammation for so long and my pericardium hasn't thickened (at least on exams) so I was wondering how did constrictive pericarditis developed for you? It just happened without noticing it?

Did you have chest pains AFTER your initial bout of pericarditis ended?
or did it silently developed over the years?

Please let me know as this will help me in the future.

Thanks.

stkitt
Forum Moderator


Date Joined Apr 2007
Total Posts : 32602
   Posted 8/28/2013 12:50 PM (GMT -7)   
Fred,
 
You are very welcome and it was a very simple thing I did posting the link to CC.  You have a right to be afraid.  Scary is something I understand way to much so if you have surgery know I will keep you in my prayers.
 
Here is another link you may like for reference down the road. 
 
 
Blessings,
Kitt
~~Kitt~~
Moderator: Anxiety, Osteoarthritis,
GERD/Heartburn and Heart/Cardiovascular Disease.



"She Stood in the Storm & When the Wind Did Not Blow Her Away, She Adjusted Her Sails."

Schwaben
New Member


Date Joined Jun 2013
Total Posts : 8
   Posted 8/28/2013 12:53 PM (GMT -7)   
13 years ago I started having chest pains but mostly when I was laying flat on my back. It didn't go away so I went to the ER and had the ER doctor tell me I was fine. No heart attack. Went home and things did not get better. Went in to my family physician and he ordered a stress test. That is when they found out it was pericarditis. Gave me some meds and said it would work its way out and I will be fine. It did get better but shortly after I developed a heart skip that I had checked out a couple times over the next 5 years. Told it was nothing to worry about. It was very common. 8 months ago my heart went into A-fib. Went back to normal with drugs. 5 months ago went into A-fib again. This time I needed a cardioversion. (shock) New meds seem to keep it under control. Shortly after 2nd a-fib I started feeling very tired, listless, winded. Never had that problem before. Had more tests, Xrays, CT's, MRI's then I care to mention. Finally a doctor at the CC diagnosed me with CP. Surgeon confirmed it and both recommend surgery. It's not an emergency but should be done because it will only get worse. That brings us to today. I want a second opinion before going through with this. Schwaben

stkitt
Forum Moderator


Date Joined Apr 2007
Total Posts : 32602
   Posted 8/28/2013 12:59 PM (GMT -7)   
Schwaben,
 
Great to see all of you discussing and sharing with one another on this topic.  I am going to post the definition of Constrictive Pericarditis for reference only as others reading may not understand some of the content re this topic.
 
Constrictive pericarditis. Some people with pericarditis, particularly those with long-term inflammation and chronic recurrences, can develop permanent thickening, scarring and contraction of the pericardium. In these people, the pericardium loses much of its elasticity and resembles a rigid case that's tight around the heart, which keeps the heart from working properly. This condition is called constrictive pericarditis and often leads to severe swelling of the legs and abdomen, as well as shortness of breath.
 
I hope this clarifies just what happens in  constrictive pericarditis.  :-)

Knowledge is wealth and I know I love to learn.  I also love to know members are advocating for themselves. My hat off to each of you.

Kindly,

Kitt


~~Kitt~~
Moderator: Anxiety, Osteoarthritis,
GERD/Heartburn and Heart/Cardiovascular Disease.



"She Stood in the Storm & When the Wind Did Not Blow Her Away, She Adjusted Her Sails."

SouthernAllStars
Regular Member


Date Joined Jan 2013
Total Posts : 30
   Posted 8/28/2013 2:22 PM (GMT -7)   
From what you are saying friend, it looks like your constriction is pretty recent it developed in the past year. Have you tried anti inflammatory therapy to maybe reduce the constriction? On some people no test can show the inflammation but if inflammation can cause constriction and still not visible i guess there isn't really inflammation anymore.

I have also developed the heart skip beats but I also have chest discomfort.

BAMACONN
New Member


Date Joined Sep 2013
Total Posts : 2
   Posted 9/13/2013 7:13 AM (GMT -7)   
Great info on the CP posts! In the process of searching for accurate info and want to make a wise decision on which direction to proceed.

58 YOA male; developed pericarditis Oct 27, 2012. Went into A-fib, took two days to come out. Started to heal, but 3.5 months later, pericardial sac started to thicken and water retention started in mid section. In May 13, cardiologist started Colcrys/Colchizine (anti-inflammatory normally used for gout) at .6 MG/day and 40 MG/day lasics for the water. The medicine(s) helped to a small degree.

Prior to the Oct 12 event, was a well conditioned athlete, working out regularly, playing full court basketball and doing very well. Now can only walk 2 miles, and can't jog 100 yards before exhaustion. The heart is fine and recent heart cath confirms same, but the sac is constricting the heart such that it can't pump fast enough to supply the need under exercise.

Cardiologist now recommending stripping procedure. He says that this is the only option left to attempt to achieve normal health/lifestyle once again. Just now finding out that in my area, the medical community does not routinely perform these surgeries. Not a surprise as CP is rare, so I'm looking to expand knowledge base and search for an expert who performs these surgeries.

Any info/help would be fantastic. Hope that sharing this info helps someone else. Blessings to all!

Schwaben
New Member


Date Joined Jun 2013
Total Posts : 8
   Posted 9/13/2013 7:42 AM (GMT -7)   
Bamaconn,

Your story is very similar to mine only i had Pericarditis about 13 years ago and am just now having the problems associated with Constrictive Pericarditis. I was prescribed 2 different types of diuretics and this seems to really help with the shortness of breathe and fatigue. SO much so that I'm questioning going through with the operation to strip the pericardium. Next month I will travel to the Mayo Clinic in Minnesota for a second opinion. My first opinion came from the Cleveland Clinic. CC and Mayo are ranked 1 and 2 in the country for cardiac care. In my opinion you want to find a surgeon that has experience performing this exact operation. I don't think there are that many around. CC has 3 surgeons that fit that description. Don't be afraid to ask the surgeon how many of this type surgery have they performed and what was their success ratio. They should be able to give this information to you. If you don't fell comfortable them find another surgeon.

Schwaben

BAMACONN
New Member


Date Joined Sep 2013
Total Posts : 2
   Posted 9/13/2013 8:00 AM (GMT -7)   
Schwaben,

Good info, much appreciated. Your thought process sure is similar to mine with asking and researching. Hope this turns out well for both of us! I've only been on one kind of lasics, Furosemide. If you don't mind sharing, what kind were you prescribed that gave you better results?

Schwaben
New Member


Date Joined Jun 2013
Total Posts : 8
   Posted 9/13/2013 8:11 AM (GMT -7)   
The first doctor prescribed 25 mg of Spironolact which did nothing to help my symptons. The second doctor, which was the doc that actually diagnosed me with CP, doubled that dose to 50 mg and added 10 mg of Torsemide so now I'm taking both and it really helps. Note: make sure you are near a restroom about an hour after taking them. My concern is, what is the long term effects of taking these diuretics. Not sure they are meant to be maintenance drugs.

Schwaben

SouthernAllStars
Regular Member


Date Joined Jan 2013
Total Posts : 30
   Posted 9/13/2013 4:48 PM (GMT -7)   
Hey guys. I think you should give prednisone/NSAIDs a try. In my case the MRI does not show inflammation yet I have ongoing inflammation.

I have heard of a case where the doctors said to a patient that it was impossible to reverse the damage of the pericardium but after being on colchicine for some time, it was reversed. And if yours recently developed then maybe yours can be reversed too. or Maybe i read wrong: heres the link:

Look for nancy stephan:

https://www.facebook.com/groups/pericarditis/

I know it sounds crazy. I've read it in a facebook group. Give it some reading.

I would really like to have the contact info of a surgeon by the way. I want to discuss this procedure if I am to have it in the future so if any of you know a surgeon willing to listen a case let me know.
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