Pericarditis & Pericardiectomy- CLOSED THREAD

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els
Veteran Member


Date Joined Oct 2005
Total Posts : 4031
   Posted 6/11/2007 2:01 PM (GMT -7)   
Hi everyone, I am starting a new thread on this topic as the other one was getting a bit long and difficult to navigate.  Take care and be healthy :-)

Post Edited By Moderator (stkitt) : 10/21/2009 8:58:19 PM (GMT-6)


sherwood
Regular Member


Date Joined Dec 2006
Total Posts : 111
   Posted 6/14/2007 11:57 AM (GMT -7)   
Hi nyonuk. I have been looking out for news of you and am so glad surgery went well-you are the only other person i have found in UK. Also hello Nan was interested to read you have been able to stop thyroid medication weird isn't it. Like they say don't have an eye test for 3 months post surgery! My husband has had all clear from cardiologist. His ECG and echo are fine. There was some speculation as to whether ECG would revert or always show the dip. Also his liver is completely recovered. Can't believe all that has happened within the space of a year.

Storri
Regular Member


Date Joined Mar 2005
Total Posts : 191
   Posted 6/15/2007 3:55 AM (GMT -7)   

Hey guys!!

WOW, its been a long time since I have posted in this forum; and have really missed everyone!  Just wanted to let everyone know its will be TWO years this JULY since my percardiectomy, and I am doing fantastic!  I had an MRI done last week; and it showed that not ONLY has the calcification NOT RETURNED, but due to the trauma that the calcification caused by my heart being enlarged, the recent MRI showed that my heart is NOW normal size!  THE CLEVELAND CLINIC and DR. BRUCE LYTLE produced incredible results and I never dreamed I would be completely healthy again!!  I was so NERVOUS waiting on these results; and to find out that my heart is completely normal now and recovered is more than I could have ever hoped for!  The right ventricle which was in really bad shape due to the 11mm's of calcification, and was weakened, ALSO showed completely recovered and back to normal.  NO more symptoms, no more swelling, or rapid heartbeats!!!  I am leading a completely normal life, and EVEN exercise now........lost 25 pounds of water weight due to the acities.  ALSO due to Dr. Lytle's expertise and not having to open me up through the sternum; and going in under the breast, and between the ribs, has left incredible scar results.  You can't even tell I had surgery!  The scar is no worse than a breast augmentation scar; and is practically invisible.  I feel truly blessed due to Dr. Lytles genius, as I could not have asked for better results!

NAN!!!!!!!!!  HOW are you doing??  I would love to hear from you!  YOU were such a comfort too me; and due to the fact that you had your surgery before mine, you were so inspirational in my FINAL decision to finally have surgery after being so scared for so long!  YOU literally gave me the courage to make the final date to go in and have that surgery!!  I was told had I waited another six months, my heart would have failed; and they say I would have surely died.  SO I owe you a GIANT THANK YOU NAN, for giving me the COURAGE and the SUPPORT you gave me in making that final decision to go forth.  I am so thankful for this forum, as it was so hard to find anything on CONSTRICTIVE PERICARDITS back then.   I spent so MUCH time on this forum; and I hope that everyone that I used to chat with is doing great, I would love to hear how you are all doing!  Again, thanks to everyone that supported me during that time, and gave me so much moral support!   Sincerely, Cathy


Storri
Regular Member


Date Joined Mar 2005
Total Posts : 191
   Posted 6/15/2007 4:42 AM (GMT -7)   

I just wanted to add a few more things to anyone going through this.  I was told prior to surgery; after visiting Cedar Sinai Medical Center, and The Mayo Clinic in Rochester; and finally at the Cleveland Heart Clinic, that the surgery (pericardiectomy) has a high mortality rate and thus the reason I had postponed my surgery for so long.  When I was diagnosed, I had a record breaking 11mm's of calcification on my heart and my heart was severely constricted.  I am 44 years old; and the surgery was two years ago.  I did NOT have to go on a heart/lung machine; and the surgery took four hours; and I was released from The Cleveland Clinic after five days.  As others have reported, the surgery is no picnic, the tubes, probably being the worse part and having it done the way I did, under the breast; and through the ribs is a bit more painful than the sternum, (all surgeons I have found do it that way; and Dr. Lytle is the only surgeon that has perfected that technique).   Although it is a bit more painful, due to going through muscle and nerves, and the sternum doesn't have that, it was worth it for me, being a woman, and not wanting the "zipper scar" down the middle of my chest.  The bottom line is I was told I could die in surgery; and that they had not seen a patient with as much calcification as I had, so I was one of the worst cases any hospital had ever seen.  With that being said, I AM LIVING PROOF that having a pericardiectomy with a SKILLED SURGEON can not only save your life, as it did in my case, my CHANGE your whole life.  TWO years post surgery, its like it never happened.  I want to give back to this forum, as it had given so much too me when I could hardly find anything on this topic; and was told how "RARE" it is.  I no longer believe it is that rare, I just think it goes misdiagnosed so much.  The bottom line is, if you have this, do not postpone surgery, the sooner you can have it done, the sooner you can lead a normal life again.  This literally ran my life for over five years; and I was practically bed-bound due to the symptoms.  A pericardiectomy is THE CURE for constrictive pericarditis......BUT ONLY IF you go to a SKILLED SURGEON that has performed these surgeries before.  I have heard disasterious results going to surgeons who want to attempt the surgery, and have not done them before.  That being said......The Cleveland Clinic was the answer for me; and my insurance covered 100% of the cost.  The Mayo Clinic is another great hospital.  I would have had the surgery there, but opted as I mentioned above with Cleveland, as he is the only one that goes between the ribs, under the breast, rather than having to saw open the ribs, and go through the sternum, and being a bit vain, I didn't want that scar.  BUT, the scar is the least of anyone's worries with this problem, and both hospitals are incredible.  Cedar-Sinai would NOT even operate on me, as my case was to severe, they refused to operate on me, which then lead me to Mayo, then on to Cleveland for answers.

I hope that I can help someone that is in the position I was in.  Sick, afraid; and unable to find a surgeon that knew what he was doing.  I live in Las Vegas, and went to over 10 surgeons that had no clue what to do; and thus the reason I traveled to the three other hospitals.  Cleveland was the answer for me; and provided the results I mentioned above.  A COMPLETE RECOVERY.  The recent MRI results showed as if I never had constrictive pericarditis, and I am cured and living a normal, healthy life after a long road of sheer fear and stumbling through the system due to what they say is the "rarity" of this condition.  I was on this forum for over two years, and its not rare.  I still have thyroid problems, and wonder after being on this forum, if it has something to do with this condition, as almost everyone I spoke to that had this, had an underactive thyroid.  Mine is controlled my medication; and that is the only problem that I am left with.  Easily treatable with medication.  Well, that is my story, and I just want anyone to know that finds this forum that their is hope and full recovery with a pericardiectomy and the SUPPORT OF THIS GREAT FORUM!!!  Cathy


sherwood
Regular Member


Date Joined Dec 2006
Total Posts : 111
   Posted 6/16/2007 6:37 AM (GMT -7)   
Hi Storri, How very true it is that people may not even know they have this condition. We were SO lucky as my husbands cardiologist had seen this condition as a med. student and was interested in it. Having said that my husband was only the third person he had seen and he said there must be loads of people who have not been diagnosed. My husbands pericardium was 10mm thick on average and 15mm in places. The surgeon sent us pictures and the removed pericardium looked like orange peel! We were only just beginning investigations a year ago and can't believe how quickly things happened. I'm with you on the op. sooner the better but Oh boy was it scarey waiting and then living through it all. Glad to hear you're doing so well. X

ericsmom
Veteran Member


Date Joined Jan 2007
Total Posts : 1042
   Posted 6/16/2007 6:53 AM (GMT -7)   
Hi Everyone
 
I suffer from pericarditis too, but have been told it was due to trauma from the death of my youngest son.  They treat it with massive doses of prednisone.  I also have R/A and lupus, which was dx at my first hospitalization from pericarditis. 
When I try to taper my prednisone, once I get down to 5 mg, the pericarditis returns EVERY time so far.
 
Thank you so much ELS for posting this .... because I see here that pericardium got measured for some...I have never been measured...now when it happens, I dont even bother going to hosp...I just increase the pred dose for a while..and it goes away on its own.  Something tells me now that perhaps I shud be pushing my rheumy to investigate this further?
 
Thanks again
Diane
A/Fib, diagnosed Aug, 1997, R/A diagnosed in Sept. 1998, Pericarditis and Lupus in Dec, 2003, Diabetes, diagnosed march, 2004
 
Bisoprolol 5 mg, Propafenone 150mg twice daily.  coumidin 4 mg, plaquenil 500mg, prednisone 10 mg sometimes more, metformin 2000 mg, diamacron, wellbutrin,fenofibrate
 
 
 
Courage is fear that has said it's prayers
I have lost a life - not my own.
But it would have been easier to have lost my own life
than to have lost the life,I loved more than my own
 


sherwood
Regular Member


Date Joined Dec 2006
Total Posts : 111
   Posted 6/18/2007 8:48 AM (GMT -7)   
Hi ericsmom. Guess Eric was your son? I can't imagine how bad that time must have been for you. I'm so sorry you lost him. I have read all I can get my hands on re pericarditis and it does seem to be associated with lupus. I think you would be advised to see a cardiologist to have it investigated etc. as it has gone on for a while. Only thing I would say is if it was suitable and suggested would you have the op to strip the pericardeum? A lot depends on that answer really. You really have been hit with the works though haven't you. RA as well. Ouch. This is definitelt the site you need for moral support and info. Don't know what I's have done without it
Sherwood X

nyonuk
New Member


Date Joined Sep 2006
Total Posts : 17
   Posted 6/18/2007 1:49 PM (GMT -7)   

Hi Sherwood;

Thanks for the kind words. I must have been one of the lucky ones. The operation report says my pericardium was only 1-3mm thick. I guess they must have caught it a lot earlier before it had a chance to progress. I can't imagine how sick others must have been / are with this condition as I know how bad I was with only that amount of constriction. I'm suprised at the rarity of the condition though and that more cardiologists / surgeons have not come across it. My surgeon said he did around 3/4 pericardiectomies a year. The most he had done in one year was 7. Though he did stress there were only two places in the UK that would be able to deal with it. Themselves in London and somewhere in the north of the country. I'm making good progress at the moment, weight is still coming off and I feel a lot better in myself. I have to say the pain in my ribs / back / chest etc. is worse at the moment and I've had to increase the pain medication for a while. I guess it's just as things heal. I'm 4 weeks post-op today.

Best wishes to you both!

Nyonuk.


Boog
Regular Member


Date Joined Feb 2007
Total Posts : 52
   Posted 6/18/2007 8:51 PM (GMT -7)   

Hey Guys,

 I didn't realize they started a new thread.

I had my Pericardium removed on Wed June 13th along with a Maze Procedure. Everything went pretty smooth although they now hear a rub they didn't hear before the surgery. I also have the pain in a couple spots where there was pain before. I don't understand how a rub can show up after the stripping.

 The surgeon said the Pericardium was about 3-4 mm and that is was like a blanket of snow all around the heart. Has anyone else ever experienced a rub sound after the procedure and I am wondering if these things clear up or I just live with it.

Any input would be appreciated.

 

                Boog

 


nyonuk
New Member


Date Joined Sep 2006
Total Posts : 17
   Posted 6/18/2007 11:56 PM (GMT -7)   
Congratulations Boog! Excellent that it's done. Don't know anything about the rub. Could it be that for a while your heart will take time to get back to normal? I was told by my cardiologist it could take up to 6 months and my surgeon said a year.
Regards,
 

Sunnymom2
New Member


Date Joined Jul 2007
Total Posts : 1
   Posted 7/1/2007 8:29 AM (GMT -7)   
Hi everyone,
I am a new joiner. I am 42 year old. I have had this pericarditis now for almost 2 months off and on. Went to the  cardiologist, had an echo. That looked normal, but I wonder how. I guess because it is new.
Anyway, the discontinued my Ibuprofen a week after my symptoms cleared up, and now that it has "come back" (did it ever really go away?) I am taking the Ibuprofen until I don't know when....
 
I do not know how some of you have done it. It is pretty scary type pain, and I did at least find out through a stress test and echo that my heart is strong, and I have no presence of any other heart problems-- but still, I feel this is the most alarming type pain I have ever had.
 
I read that cholcine had helped a lot of people. Anyone her try it?
I am reading that there is conflicting research now on steroids therapy.
I am also going to start taking fish oil daily in the amount of 2000 mg daily with a 2:1 or 3:1 percentage, as I hear that it quells inflamation in the body. It is certainly worth a shot.
 
Anyone out there exercise with this condition? I would sure like to hear from you. I would like to exercise and get 20 lbs off, as I studies show that fat predisposes you to inflammation. After this eye opening experience, I am trying everything I possible can that MIGHT help.
 
 

Boog
Regular Member


Date Joined Feb 2007
Total Posts : 52
   Posted 7/3/2007 3:46 PM (GMT -7)   
Hi Sunny Mom
 I was told by many Doctors it was OK to exercise and thats where I went wrong. After getting the book "the Pericardium" by Dr Spo____ (not allowed to say it I believe) and talking with this great Doctor several times, he suggests and I found out that exercise can strongly irritate the condition. He wrote an entire chapter regarding the effects.
 Rest and anti inflammation along with Colchicine will help. I was ill advised and eventually had to have my Pericardium removed. It can take a year or more to get through this based on my research. Too late for me, Hope it works for you. Enzyme type anti inflammatory Meds like Serrapeptase can be used with Ibupropren as well.
 Acupunture has worked for some people as well. Email me if you would like. I spent 2+ years and saw 4-5 experts before getting the right info.
 
              Boog

LJC
New Member


Date Joined Jul 2007
Total Posts : 1
   Posted 7/10/2007 11:45 AM (GMT -7)   
I am new to this site. I began this morning with the postings from Teri16, Nan2, Storri, ericleer and pandacrazy. I lost the next forums. I am highly interested in knowing how they all are.

Two weeks ago I went with my mother to the caridologist who told her she has constrictive pericarditis and after they run a few tests will probably have to do surgery. I have looked up much information and found that the surgery will be pericardiectomy. This forum that started in late 2004 has given me hope for my mother. The doctor scared me to death when he told me the percentages of the risk involved. I know there is risk in any surgery.

My mother is 72 and in 2002 had knee replacement surgery. As a result of cumidin toxicity she had a pericardial effusion which resulted in a satisis or drainage of the blood from the pericardium. (sorry about spelling) I am asuming this is the cause of her constrictive pericarditis now. about a year after the drainage procedure she began to have the shortness of breath. It was getting difficult for her to push the vaccum. Now she can't walk to the back door without severe shortnees of breath.

Reading the wonderful outcomes of your pericardiectomies has given me relief. We will probably know in a week or so when surgery will be.

Thank you for all the encouraging statements.
LJC

els
Veteran Member


Date Joined Oct 2005
Total Posts : 4031
   Posted 7/14/2007 11:07 AM (GMT -7)   

Hi LJC, Welcome to healing well forum.  I am sorry you havent had any response as yet.  Sometimes the cardio forum gets alittle slow.  But hang in there and I am sure they will respond before too long.

Please do post again and let us know how your mother is doing.  I wish her and you all the best luck.

Take care :-)


Elisha
Co~Mod: Depression
Moderator: Heart & Cardiovascular Disease
http://www.healingwell.com/donate


Boog
Regular Member


Date Joined Feb 2007
Total Posts : 52
   Posted 7/25/2007 8:43 PM (GMT -7)   

Hi LJC, I am sorry I am not one of people who wrote a long time ago but I am 6 week post surgery and doing pretty well considering they did a Maze procedure at the same time. It is not anything to look forward to but the recovery from the surgery is a little tough to start but gets better fast. Time never moves fast enough in healing but I have been back to work for 2 weeks. I have my email contact box open if I could answer any questions I have the answer to. I really checked into this thing before jumping in. I wish your Mother well.

              Boog


Nan2
Regular Member


Date Joined Nov 2004
Total Posts : 175
   Posted 7/29/2007 10:15 PM (GMT -7)   
Hi everyone!
 
Gosh it's been a long time since I've caught up here...sorry!  Busy summer!  Storri!  SOOOOO great to hear from you!  I've been thinking of you and often wonder how you are doing!  Congratulations on your 2 year anniversary...isn't it great to be alive? 
 
Boog and Nyonuk....congratulations on getting to the "other side" :)  I'm so happy for you.  I hope you continue to feel better and better!  I wonder now how many of us there are that we have "cheered on" since 2004...I agree with Storri....I don't think it's as rare as it is presented to be.
 
LJC and Ericsmom...welcome!  This site was a life saver for me....this December 15 will be 3 years for me.  I can't believe it.  Last summer I "graduated" from Cardiology!  They told me I had 14 mm in some places when they did the surgery!  Now all is normal and I qualified for standard risk health insurance :)  Yay!  This spring I also got off of my thyroid meds...for whatever reason...my post-surgery hypothyroid thing resolved. 
 
I'm so thankful they figured it out.  They had checked for so many terrible things in the year and a half of doctoring that I was actually relieved when they told me it was constrictive pericarditis and I needed surgery to fix it.  Surgery was an experience but I'd do it a hundred times over to feel well again like I do now.  It sure changes life perspective.
 
For those of you that haven't read my story...I was 34 with 2 little kids and feeling lousy.  I chalked it up to having a new baby and being tired except I couldn't explain the feeling of being strangled every time I walked somewhere.  After over a year of searching here in my home town...I traveled to Mayo hospital in Rochester and they figured me out in 10 minutes and I was scheduled for surgery within the month.  Scary times but I truly think I'd be dead by now without it.  I felt better by the pressure in my head going away right after surgery...then every day I just felt better and better.  Made me realize how sick I had been.  Like a fool, I had worked through the whole ordeal...thinking it'll get better the next day...I felt validated and relieved to have a reason for how I was feeling.
 
Anyway, enough rambling...my deal now is we'd love to have another child...I'm almost 38 now so getting a bit old.  I was "cleared" by the cardiologist last summer but no luck other than an ectopic pregnancy in Feb which was no picnic.  I hope I'm not pushing my luck.  Although I'm so thankful...part of me feels cheated of those 3 years of prime time for pregnancy...now it's getting to be twilight time.  Anyway, I'm blessed with 2 great kids and I'm thankful every day.  I have faith in God's plan...even if I do throw my own opinion in there every once in a while :)
 
If I can help anyone out with my story....I'm more than happy to do that!  I know I was supposed to email someone from this site a while back and I'm forgetting who it was....sorry...I'll look back.  I'll check more often.  I wish the alert thing with the email worked better so I would know to check for new postings!
 
Take care everyone...we are members of an unusual but special club.  I think of you often and am grateful to "talk" to others who have traveled the same road...
 
Nan

eukard
New Member


Date Joined Nov 2006
Total Posts : 5
   Posted 8/1/2007 8:55 PM (GMT -7)   
Hi everyone,

I had surgery for CP a year ago and wrote a few posts last fall. I'll repeat what I said then, that this forum was incredibly useful to me hearing what other people had gone through. Doctors, no matter how wonderful their knowledge and skills, can never offer the perspective of patients who can describe their experiences from the inside.

For people here who are grappling trying to pin down their diagnosis or who have a diagnosis and are considering surgery, here is my experience.

CP is an extremely difficult diagnosis to make. The course from an initial episode of pericarditis to a truly constrictive physiology can be long and complex so even skilled cardiologists are often at a loss about what is effective treatment. And even when frank CP is confirmed, any sane person has a natural reluctance to accept that surgery is the only option. Having your chest opened up and your heart peeled is definitely not trivial, if any surgery can ever be considered trivial.

I was lucky. I had always been very healthy before I had an attack of pericarditis which took several weeks of tests to confirm. My doctors prescibed anti-inflammatory drugs, NSAIDs, colchicine and courses of steroids when my symptoms didn't go away. Within a few months it looked like I was developing mild constrictive symptoms but these could mostly be managed by drugs. My cardiologist recommended catheterization which I resisted because of its invasiveness and also because I knew that was the road to surgery which terrified me.

Anyway, my symptoms gradually worsened over 2 years while I became progressively miserable. I was formerly an athlete (mountain climbing, swimming) and CP gets in the way of an active lifestyle! I found this forum because I was looking for people's reports who had gone through surgery and could describe just how tough it would be. So I was able to balance my terror with real information which was a tremendous help.

My surgery turned out very well. My pericardium was 7 - 10 mm thick, much thicker than CT scans and MRIs had indicated, but the surgeon was able to remove all of it. After I regained consciousness, my main motivation was to get the hell out of the hospital as soon as possible because people get sick in hospitals! After a day in IC, my nurses told me that I had to be able to walk a quarter mile around the hospital ward, climb a flight of stairs and have a bowel movement before they'd discharge me. My first laps around the ward were done with my chest tubes in carrying the chest tube container with me. I managed climbing stairs the next day and insisted on enough stool softener to get discharged on day 3.

I asked my cardiologist aftwerwards what life would be like without a pericardium. He said I wouldn't notice much difference except to watch out driving since my heart has less padding around it now and an accident which produced a direct blow to the chest could be much more dangerous than formerly. I'm driving very carefully these days!

eukard

Tea1234
New Member


Date Joined Jun 2006
Total Posts : 19
   Posted 8/19/2007 3:39 AM (GMT -7)   

 

Hi all!

I don't know if anybody here remember me, but I had problems with recurrent pericarditis about 4-5 years. The origin was and still is idiopathic.

The main problem was sharp chest pain. Others: an overall sense of weakness or feeling sick,  I couldn’t exercise, I got tired easy etc.

In the echo my doc found always extra fluid in my pericardium. I tried several medicines (Prednisone + azathioprine worked best).

I came here to tell, that now I am much better. I was in a surgery. Docs made a pericardial window in my pericardium. They also took the extra fluid away and made some kind a "wash" inside the pericardium with corticosteroid. I don't need any medication right now.

I feel so relief now. I have some pain left but it is only minor and I don’t need any medication for it.

Thanks for you all and this forum sharing important information about pericarditis and its cure. This has been great help for me.

Tea

 


Nan2
Regular Member


Date Joined Nov 2004
Total Posts : 175
   Posted 8/19/2007 4:16 PM (GMT -7)   
Welcome back!  Glad you are feeling better.  I agree...this site is pretty cool, especially for unusual dx like pericarditis. 
 
Have a great week!
 
Nan

specialk
New Member


Date Joined Aug 2007
Total Posts : 1
   Posted 8/22/2007 11:50 AM (GMT -7)   
My father has chronic heart failure due to Constrictive Pericarditis, he is to undergo surgery to remove the pericardium sack (Pericardiectomy) on August 28th, 2007 at Brigham & Women’s Cardiac Surgical Center. My father’s mother had rheumatic fever and I thought that my condition might be hereditary because both my father and myself have different forms of pericarditis.

Here is my history with Acute Pericarditis

3/02 - First episode lasted approximately 72 hours
10/02 - Episode lasting approximately 72 hours
5/03 - Episode lasting approximately 36 hours
3/22-24/04 - Mild episode lasting approximately 36 hours (managed pain with ibuprofen about 12 pills/day)
11/10-12/04 - Episode lasted approximately 36 hours
6/10-16/06 - Mild episode that lasted approximately 72 hours.
12/16/06 - Pneumonia

My most recent Episode

8/14/07 - Around 4:30 pm, I noticed a sensation of having a lump in my throat and thought it was because I was anxious about a planed trip to Philly the following day. I had been running a number of errands in preparation for leaving. At 4:30 pm I purchase Advil because I knew it was more than anxiety. I took 3 200 mg pills at approximately 9 pm before I went to bed.
8/15/07 - I started taking 3 200 mg pills every 4 hours starting at 8 am to manage the pain associated with Acute Pericarditis. We left for our trip around 10:30 am and because I was sitting for long periods of time while driving the discomfort was minimal and the Advil was relieving the pain so my breathing was normal and I didn’t experience the water logged sensation that I normally do. On a scale of 1 to 10, 10 being extreme pain, I was around a 4.
8/16/07 - At 4 pm I definitely was feeling chest pain but it was mild compared to previous bouts. I continued to take Advil every 4 hours which I had started the day before at 8 am.
8/17/07 - I felt the typical pain associated with Pericarditis when I was lying in bed and if I moved suddenly for any reason. I also experienced centralized chest pain when walking up a flight of stairs. The pain was coinciding with the elevated heart rate while going up the stairs. The overall pain I experienced was more like a 6 out of 10. I continued to take Advil round the clock to manage the pain. I was also experiencing the water logged effect when I would try to breath in deeply.
8/18/07 - The pain worsened and I noticed that my shoulder and neck muscles were stiff and pretty sore throughout the day. I had to be careful not to to exert myself otherwise the pain was worse. Again I felt discomfort when I would go up stairs or when I was lying in bed and moved suddenly. It would hurt whenever I sneezed. I continued to take Advil every 4 hours and even woke to take it in the middle of the night. Pain was at its worse and on a scale of 1 to 10, 10 being extreme pain, I was around a 7.
8/19/07 - The symptoms had receded during the night and I was feeling less stiffness in my neck and shoulders and I was able to take in a deep breath but still felt water logged. I continued with Advil through the day and took my last dose at 7 pm.
8/20/07 - The pain is almost completely gone, I can breath effortlessly and there is no stiffness in my chest, neck or shoulders. I had stopped taking Advil the day before.

During this episode I experienced no fever. Because I have experienced Acute Pericarditis I knew almost immediately when the episode began and I was able to manage the pain with Advil from the beginning. I believe this knowledge lessened the pain that I experienced during past bouts.

I am healthy 44 year old male who has a young family and leads an active lifestyle. This has been upsetting me for some time because my pericarditis is idiopathic in nature. I never know when I will have an episode which gives me cause for concern.

Nanda
Regular Member


Date Joined Aug 2007
Total Posts : 101
   Posted 8/24/2007 12:44 PM (GMT -7)   
Hi all,
this is my first post. I've been reading your alls post just to hopefully shed light on what I have and although my problems with pericarditis seem minor compared to most of yours, it is still troubling for me and am hoping you can give me some insight on how to deal with this.
Two months ago went to my doc for heart palpitations (feels like it slows, drops and then starts back up), occasional dry cough and feeling of pain and chest pressure (like a 100lb weight on my chest) when I lay down or lean back in my work chair on and off. After being sent to a cardiologist for stress echo, ct scan, 24 hr holter monitor and then event monitor and blood work, only thing they could find was a small amount of fluid in the pericardium and some indication on the tapes that "showed" pericarditis. As far as the blood work there was only an indication of possible factor for rheumatoid arthritis. (My aunt had it)This took about a month to figure out and in the meantime, things have gotten worse for (extremely exhuasted, short of breath, etc.) , a month into it I was first put on indomethacin, prilosec and percoset for the pain (that was getting worse also). Two weeks ago colchicine was added but not any better improvement. Now he's switched me to prednisone 20mg three times a day at the beginning of this last week. Now I actually started feeling better immediately but then my sleep has deteriorated to 4 to 6 hours a day and now I'm getting a relapse of the chest pain(bad one right now) and back to taking the percoset to relieve it( argh!)

So here's my questions:
Is it normal to have ups and downs with the prednisone for awhile?
Have others felt like there heart was pounding at times but when you check your pulse its normal? Just loud?
When they last took my blood work and then did the injection for the ct scan they had a heckuva time getting a vein and in fact for the ct they ended up doing a deep vein injection via ultrasound. Now my veins have never been that great but that was the most trouble they've had. Is that odd?

I also take thyroid as am hypothyroid and estrogen as had a total hysterectomy years ago (and yes those blood levels were normal on this last round of tests).
Oh and I was tested for GERD about 4 to 5 months ago because of left side chest pain at the time. That also came back normal.
At this time they think it might be viral but are unsure (I had a horrendous bout of influenza in January).
Thank you for any help you can give me.

sylmar2007
New Member


Date Joined Sep 2007
Total Posts : 3
   Posted 9/6/2007 1:50 PM (GMT -7)   
Hello everyone,

I am hoping for some help with understanding how this disease and its recovery progresses.

My husband recently had an emergency pericardiocentesis (~1500 ml of fluid) diagnosed following an initial visit to his GP for a high fever (> 101). He was released from the hospital after 2 days with 1.2 mg colchicine and 1600 mg ibuprofen medications. All the tests they ran on the fluid and his blood were negative, so the cause is assumed to be an undetected virus or idiopathic.

His EC and EKG after 8 days seemed fine (fluid mostly gone), so the ibuprofen was reduced to 800 mg/day. He was also allowed to resume exercise (moderate walking on a treadmill). After only five days, his symptoms--fever and shoulder pain--returned and the next EC showed that the fluid had increased. He was reluctant to take prednisone, so his ibuprofen was increased to 2400 mg. His EC one week later showed little change. Now, 2 days later, his fever has become quite high again (101.8).

He also has some other symptoms which may or may not be related: numbness and pain in his feet (no cause could be found for that either), extreme thirst, a hemoglobin A1C measure at the high end of the normal range (6.0), with other glucose-related results normal.

My questions are:

* How does the recovery from an effusion progress? Does reabsorption cause a fever as happens for, say, internal bleeding? Or is a fever always a sign of a worsening condition?

* Should this be considered a recurrence or was the initial episode just not resolved?

* Is my husband correct in trying to avoid steroids if at all possible? The recent literature seems to suggest this tactic.

* Has anyone experienced any of the other symptoms?

* How does one find a cardiologist who is well acquainted with pericarditis?

Any feedback and/or related experiences would be appreciated.

christine83401
Regular Member


Date Joined Dec 2005
Total Posts : 32
   Posted 9/11/2007 3:13 PM (GMT -7)   

well, it's been a year since i last posted and what a year it has been.

For those of you who are debating about a pericardiectomy - if your cardiologist says it's the right thing, then DO IT. I am now post-surgery since April 14, 2006 and it's like the whole illness and surgery are a distant memory. I can do everything I could do before I got sick. To clebrate my first year anniversary - my boyfriend and I got married on April 14, 2007.

My surgery was done at the Mayo Clinic (I absolutely agree with Storri about the need to go to a specialized place - either the Mayo or the Cleveland clinics). I also didn't expect to wake up, but I did and the recovery was easy compared to the 18 months of hell that preceeded the surgery. Dr. Nishimura was the cardiologist and the surgeon used the same below-breast entry that Storri references. He said it gave him better access to the pericardium in that he could reach both the front and part of the back of the perciardium. A little more painful, according to the surgeon, but no zipper so I'm happy.

Let me repeat Storri's message - if your cardilogist says you need the procedure, then go for it! My life has been back to normal and full of life and energy since I closed my eyes on the operating table.

God bless the surgeons and cardilogists at the Mayo Clinic - they gave me back my life.


at wit's end
Veteran Member


Date Joined Jun 2007
Total Posts : 565
   Posted 9/16/2007 5:37 AM (GMT -7)   
This sounds scary. How can one tell if they have this? If the symptoms resemble heart disease I would think it would be impossible. I have tightness and pressure behind my breastbone and read the pain is in the middle of your chest and behind the breastbone with this, now I'm freaking thinking I have this because I have some tightness in that area and in my back. I have been under a high amount of stress and anxiety since March more on than off and had started getting better back three weeks ago somewhat but now this week I have slid back the other direction. And what scares me the most is reading about the woman who developed this after trauma from the loss of her son. So sad. I haven't lost a child but did lose our dog we had for 13 years and it affected me greatly. I hope I have not developed this horrid disease from my stress and anxiety. Now both are back. sad

Nanda
Regular Member


Date Joined Aug 2007
Total Posts : 101
   Posted 9/23/2007 6:25 AM (GMT -7)   
Hmm sorry to see that none of the old timers are here any more with advice for some of us newbies with this illness. I've now been on 6 weeks of 6o mgs. of prednisone a day , 40 mg of colchicine, and avalide from my blood pressure increasing and nexium and tums for severe heartburn from all of these meds. I can no longer tolerate any of the NSAIDS and will not take them!  The doctor is finally cutting me back on the prednisone  by 5mg. every three days. My symptoms never really went completely away and in fact  Ispent an excruciating 5 hours in ER two weeks ago, where they ran all the tests again gave me oxygen and kept upping some intraveneous pain med that in the end made me sicker than a dog. I had the choice to either be admitted and get a heart catheterization or be released. They said it was the pericarditis but that there was no further swelling from the effusion . I did hear the echo tech say that my right ventricle was collapsed but then it was never mentioned again except that the ER doctor said that it was because of the pressure from the pericadrits  swelling albeit minor  swelling.? The prednisone has wrecked havoc on my body, typical moonface , acne , no sleep, etc. but that is nothing compared to to excruciating cramps in the hands and feet that have to be physically manipulated to unlock, intense aching joint pain in hips, knees and feet, and a constant burning tingling sensation in my hands and feet that at times travel up my legs to the point that I walk like a drunk person. On top of that  when I walk for the shotest distance , my heart palpitations start up and I have intense aching in my chest, left shoulder and arm. Oh yeah, and even though the chest  pain/pressure  is not all the time, well I still get it at least once a day and the only thing that helps is a percoset. My cardiologist doesn't know why I'm having all of this other pain and just wants me to cut down on the prednisone. He doesn't seem to know what to do with me as I can't tolerate the NSAIDS (severe stomach pain and vomiting). His words to me were " I don't have a good plan b for you if this doesn't work but the good news is that  eventually it will dry up"!?? I mean how does he know this if it's exactly the same on the echo readings before and during my taking all of this crap! Sorry but I just needed to vent.
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