Pericarditis & Pericardiectomy Part V

Brenda!!  WOW< so good to see you; and too hear from you.  Hope you have a speedy recovery!

 

I also was told that TB constrictive pericarditis is much worse, and the mortality rate on TB or CANCER enduced CP was much much greater, and that I was LUCKY to not have it for those reasons, in fact, the first test they did was a TB test, and it came out negative, and thus the idiotpathic cp.  I also know that having a pericardiectomy from a previous cardiac surgery is not the same as our calcific constriction.  It is scar tissue from a previous surgery and thus is easier to remove.  Some doctors will put those STATS in with their pericardiectomy stats, and they say it is unfair, because it is so much easier to remove.  BUT for sure....TB or cancer constrictive pericarditis is much much worse than what we all have which is called..IDIOTPATHIC CONSTRICTIVE PERICARDTIS   meaning, from an UNKNOWN CAUSE...altho, we all know its from that "fever" that mysteriously struck all of us.

 

I have found in the past, that with most doctors if you do not find out the information for yourself, you will be left in the dark.  It is smart to educate yourself on what was done too your body, and to get an idea on if it can return.  The reason I have pulled all of my records is because I knew that having my records stored at The Cleveland Heart Clinic was not going to be an advantage to me whatsoever..but to have them here with my local docs so that we can montier what was done; and not done, will be beneficial.  My heart is enlarged as well, and will not get better due to the calcifcation removal, I also have a leaky tricustpid and mitral valve due to this being on my heart soo long.  These are things that will never go away, along with atrial fib, which they have NO idea what is causing that, they said it was in NO way associated with the cp.  So go figure...

 

John...thank you so much for the compliment, I know that you too will do well, and I am so glad you are going to Mayo, I too went there in the beginning for my diagnoses...and they are very very intuned to CP and if you have it, they will know it.  We will all say a prayer for you, and know that YOU too are a survivor and will come out the other end with us...!!  Brenda...sleep sleep and sleep!  That is all I am doing, and altho my surgery was just 19 days ago, it seems LIKE MONTHS AND MONTHS AGO.....strange isn't it....Cathy

 

 

Welcome Back, Brenda! I'm so glad to hear from you!!

 

You take your time with your recovery and like Cathy says, 'rest'! 

 

Gentle Hugs, Teri

Brenda! Congratulations on getting through the rough part...now every day will just get better and better. Sleep a lot and then enjoy your new life! I cried the first time I walked a block and a half without feeling strangled! All the best to you for your recovery!

John...good luck to you as well this week...a big week! I found that having answers was the greatest relief! I hope they find the answers for you!

Cathy...you just sound awesome! That is just so great!

Later! Nan

Way to go Brenda!!!!!!!!  The worse is over.  Welcome to your new life. 

John99-I'm anxiously awaiting your results.  I too am currently dealing with Drs that have NO clue!!!  You just may become my ultimate inspiration.  But the travel would be difficult for me in my life.  I'm so needed but that should be the arguement that makes me go not holds me back.

Mroeck-I think surgery for CP is always inevitable.  But lucky there's an option-I guess.  I was told I "probably" had restrictive cardiomyopathy and I had at most 9 years to live and that was with a successful heart transplant.  I was devastated.  I couldn't look at my babies( 2 and 3 year old girls at the time).  They then ruled out restrictive and figured it was constrictive pericarditis.  then they said it wasn't that either called it autoimmune-lupus probably and sent me away with no answers.  since then my symptoms have gotten worse and worse.  I don't even have a Dr to call really.  So John99, how'd you get into Mayo.  My insurance doesn't need referrals but don't these top clinics require one?  The unknowing is HORRIBLE but I have to say being told you WILL die before you're even 30-that was bad.  I really wonder if all the praying that everyone else was doing and all the begging and pleading with God that I did turned my diagnosis around.  I always think of the time period when I get sad being so sick and feeling all alone.  Now I think of all of you too.

Wow, you all were steaming up the board while I was gone! lol I'm glad to see you all so supportive of one another - you are the best!! 

 

Hugs, Teri

 

PS  I'm finally on my way to feeling back to my normal? self! lol

Hello there,

I do apologize, I had my facts wrong about the tuberculosis cause of constriction. Personally I think I suffered from an auto-immune response, because of other dramatic sypmtoms I had.

I think the atrial fibrillation is caused by the enlargment of the atria. I also suffer from a leaky tricustpid and mitral valve, the heart was so very much constricted. In fact the surgeon thought he might do a valve repair or replacement a few days after the pericaridum removal. I relly did not want that. I hope to avoid this kind of operation in the future.

Yes I think it is a good idea to find out as much as possible about your medical condition, but it can be so terribly depressing!!!! The Internet makes it all possible. Also it is good from others who have had the same trauma.

I am glad to hear that so many are doing well.

Hi John, I like living on the South island, it is not very densely populated. When I was fit we did a lot of hiking in the Southern Alps. I am glad that I was able to do that. I regret that I can no longer do that. Christchurch is situated on an old volcano. If you go to Google Maps, you can find satellite images of New Zealand, they are quite detailed. Nice if you have broad-band access.

Best wishes


henk

NZ

Hello,

I am a 52 year old female living in central Illinois. I have been diagnosed with recurrent (it's actually chronic) pericarditis of unknown origin. I've been battling it for over 1.5 years, but was not diagnosed until March of 2005. At that time I was put on prednisone and high doses of ibuprofen with the intent of reducing the inflammation and tapering the drugs with the hope of no relapses. In March I had a CT and it showed a moderate pericardial effusion and small pleural effusion. I have had five relapses since the really big situation in March.

I went to Mayos in Rochester in June. The cardiologist suggested a trial of ibuprofen for 3 months, starting with 3200 mg. per day. If I had a replapse, it would be considered a failure. Then I could go on another trial of prednisone. If I had a relapse, it would be considered a failure. I could have a pericardiectomy at anytime.

I had a relapse 10 days into the ibuprofen trial which I started on June 18, and at the same time I was tapering the original prednisone started in March. I was down to 1 mg. a day. I had also been taking 1.2 mg. of colchicine which they use with success in Europe - Dr. Maisch.

July 8th I had diarrhea and tongue sores probably from the ibuprofen. I stopped all my meds at that time. Two days later the nasty symptoms came back with full force: chest pain, SOB, fever, fatique, body aches. The infection has always been there. We were just able to beat it down at different points with the prednisone.

I am now planning to schedule a pericardiectomy at Mayos. I have not read all the past posts, so please forgive me of asking for information that may already be posted. Is there anyone out there with recurrent pericarditis? Were you able to identify a virus? I have had all the tests for autoimmune disorders and they are negative. I think my original attack in January 2004 was viral, but they say there is no way to tell unless the pericardium tissue or fluid are tested.

I have asked about biopsies, but they say it is too risky, and it is better to just go in and take the pericardium.

Those of you that have had a complete (parietal and visceral) pericardiectomy, how are you doing? Has anyone had inflammation of the mycocardium following the pericardiectomy, or pleural effusions? Thank you kindly for your information. No one knows how bad this disease is unless experienced personally.

Specky

 

Specky,

In my case they also "suspect" ongoing viral infection; didn't do biopsies because it is too risky also recommended to take out the pericardium.  Unfortunately this is just half of the struggle...  when they have the pericardium out, they culture the tissue and - depending on the infection - I'll have to follow a drug treatment which may last a year or so... 

If that goes well....  I'm cured...   it is maddening, isn't it?

I am baffled by the amount of people that find this site, and are diagnosed with this disease..

your right NAN...how can this be considered RARE???  IT was only rare when we were unable to find each other....

The diagnoses is as tough as the disease itself..finding a doctor who recognizes this can be trying..but when I went to THE MAYO CLINIC, they scheduled me for all day testing, and at the end of the day the cardiothorasic surgeon met with me.  They wanted to operate the NEXT day.  I did not need a referral, they had diagnosed me themselves after testing.  SO just call either The Mayo Clinic or The Cleveland Clinic, let them know what you have, they will schedule with the same all day testing, and then you will meet with the surgeons, who will give you your options.  Mzoerk is right.......it is maddening, and very very frustrating.  I remember being told that I would DIE if I did not have surgery, and even after I am only 20 or so days after surgery, when I went in, they said the surgery was now lifesaving, if I did not go, I would surely die of heart failure had I backed out.  One thing is certain, I know for fact...had I not found this site.....I would still be sitting here, and still thinking of ways OUT OF THE SURGERY.  Until I found others with the same problem, I could not find the courage to go forth.  Go back and read all the posts....ever WORD that was posted here was a GIFT, and I carried them with me though surgery.  They would ring loudly in my ears thoughout the entire process...but gave me the strength to endure it all.

TERI!!  WE MISSED YOU SO MUCH!!  How are you baby??  Is the depression lifting?  we worry about you when we don't hear from you, and your uplifting words of support and guidance...!  Let us know how you are, we worry about you, as much as you worry about us!!

I know that most of you have a lot of knowledge re pericarditis with all you've gone through, however, I continue to find sites that offer info on this and just hope that it helps anyone who'd like to read it!

http://www.mssm.edu/cvi/pericarditis.shtml

 

Big Hugs, Teri

Hey Teri,

I am so glad you are feeling better...have the blues lifted?  Have you talked to a doctor about it?  If you ever need a shoulder, know that I am here for you.  Email me anytime, even if you just want to unload...you have certainly been there for me so much, I would love too be there for you.  Keep your chin up...we are all healing, or on the way too healing....I would imagine for us to heal mentally and physically it will take some time.  SO much trauma to the body and mind.  WE all love ya Teri, and we all are here for ya!  Love ya, Cathy

So, Cathy, how are you feeling?? How are the incision sites doing? Are you starting to get more energy back again?? How are your boys doing?! Please take care!!

With Love, Teri :)
xoxoxo

Hi Specky!

 

I don't know who you sent emails to?, but perhaps if you wrote your on board name along with HealingWell in the subject line, people would recognize it was from you?!

 

I'll let our resident experts who've been in your shoes answer your questions, Specky.  Take care of yourself and please keep us posted on how you are doing!!

 

Hugs, Teri