Pericarditis & Pericardiectomy- CLOSED THREAD

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.

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

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

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.

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,

 

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

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

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

  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: a n 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  

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.

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.

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.