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Pericarditis & Pericardiectomy- CLOSED THREAD

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Posted 3/12/2008 3:43 AM (GMT 0)
sisterinlaw
prayer headed out your way. so sorry you all are going through this
Posted 3/12/2008 7:43 PM (GMT 0)
Hi Boog!

Thanks for the sympathetic post!
I don't know that I would call the pain pericardial. I suspect it is more from trauma of the surgery, my surgeon who I don't know if he ever preformed it before, said my heart had so much scar tissue on it that he thought it was the 2 nd worse heart he ever saw. He peeled off the scar tissue and my guess is that caused the pain I now experience along with the increase in blood when I get upset and the regurgitation worsens.

I had seen a cardiologist 5 months before my injury which gave me an excellent report stating he would guarantee me no heart problems for 5 years and I could do whatever I wanted. That left me with the explanation that I was feeling pains due to anxiety. I am waiting to get back in to see him.

Frisco...

I don't think that bloody fusion is from a viral infection. From my experience it would be from possible injury to pericardium or something else. You said your husband plays hockey...did he ever get hit hard in the chest and remember his heart missing a beat or ache afterwards?

My advise would be to go to the best 'cause I had 2 surgeries in 1 month time span due to the dr. not taking my condition serious enough!
Posted 3/13/2008 5:29 AM (GMT 0)
Heartache - thanks for reply.

The first thing the doctor 2 years ago asked (when my husband first had pericarditis) was about the ice hockey - but he always used pads and hadn't been hit there. And, his doc also said that if he was hit hard enough to cause the huge bloody effusion there would have been a bruise. No bruise, no car accident, no injury. His main symptom before the diagnosis with pericarditis was extreme shortness of breath, the enlarged jugular vein, and brief pangs of pain in left chest. The thought was that it was viral and had come along so slowly that the pericardium had time enough to "stretch" so he did not have tamponade. He used to basically "ignore" anything like pain or discomfort and probably had done so for months before he sought out medical treatment. (*he doesn't do that anymore!) When they diagnosed the effusion they thought it was so large they didn't even try to drain it and just did the window. It then drained far longer than they anticipated. The docs now think the constrictive pericarditis came about due to the virus that apparently "caused" the effusion....he has never gotten back to what he felt was his pre-effusion level of fitness, though he had gone back to hockey, jogging, and being generally active. The latest symptoms leading to the constricitive pericarditis began about 18 months after the window procedure and it took 2 months to diagnose. He is not playing hockey or jogging now but is ok to do other "normal" stuff - but gets short of breath when driving or before he started on Prednisone ( he is almost through with the 8 week course of Prednisone). He has enlarged atria but otherwise "healthy heart" for now. He will have another heart MRI in a few weeks. Also, he had so much testing on the heart/pericardium/drainagae after the window procedure that they eliminated virtually everything they could "test for"....so the diagnosis was "viral".

My thought is that when there is physical trauma - esp with emotional trauma attached - there is more of a possibility of a nerve-related pain or more lingering pain...possibly what may have happened with you. So sorry you continue to have the pain. The docs we have talked with so far have said that there are "risks" of the pericardiectomy -including that up to 30% of people after the pericardiectomy having ongoing pain or symptoms post-surgery....which of course makes one re-consider having the surgery unless it is the only way to avoid worsening. I do think his doctor is taking it very seriously however, again, think my husband should seek at least another opinion and to find both a facility and surgeon who does more than a couple a year. Once we have more info on the Houston DeBakey center we will pass along the info. I'll say that I'm extremely impressed with the quick info response gained from Cleveland Clinic. A friend of mine works at the American Heart Association main headquarters in Dallas, and she says Mayo is "top-rated" for heart in the U.S. So, those are also options if need be. In my husband's case, it is not currently emergent.... but eventually will be necessary.
thanks so much for your commments.
Posted 3/27/2008 6:11 AM (GMT 0)
Reading all the responses and my prayers and well wishes go out to you all. I was diagnosed on Feb 23 with viral pericarditis. I still have the symptoms to this day, but I am not as sick as I originally was. My anxiety levels are high as it is and this condition only amplifies it. I shouldn't be complaining as mine is very minor in comparsion to most in this thread. The doctor finally gave me something for the anxiety after much insistance on my behalf. It seems to take the "edge" off somewhat. After going into the ER 3 times over the past 5 weeks I am mentally exhausted not to mention the physical exhaustion. I sit here and feel like crying because of the emotional stress,etc..just has to take its due course I guess...
Posted 3/30/2008 3:01 AM (GMT 0)

Sister-in-law...

I'm SOO sorry to hear about your brother in law...I'll keep all of you in my prayers...

Nan

Posted 3/30/2008 10:27 PM (GMT 0)
Friscofive,

You sound like your husband has better doctors than I did! Yes, I did have a bruise over my heart! But after the 2 -3 months of initial heart pain, ( I thought my heart was bruised), the pain ceased until after my surgery. I think they damaged something in the surgery or it was the pure trauma of the surgery!

I understand that the cardiac tamponade that I had was caused by the blood slowly stretching the pericardium so I guess it goes both ways! I mean from viral and trauma.

I wish my doctor had not lied to me!

Best of wishes!
Posted 4/11/2008 12:14 AM (GMT 0)
hi im new from the uk and terrified! my partner has been ill for over a year and he has just been diagnosed yesterday with constrictive  pericarditis with  calcification, unfortunatly it is, as the doctors told us, as rare as hens teeth!

he is schedualed for surgery next week and i am terrified for him, he is only 38 and was extremely healthy befor this. What can i expect? they said the surgery will take about 6 hours and he will be in icu for about a week

Posted 4/13/2008 4:39 AM (GMT 0)

Jokev

well, you've come to the right place - read as many of the posts as you can and you will see what many have gone through.  If your husband is "otherwise healthy" he has a much better chance of very good recovery post-surgery.  Research as much as you can to take some of the fear out - and ask the doctor as many questions as you can.  From what I've read, there is no statistical difference in terms of recovery with calcified versus non-calcified pericardium with pericardiectomy surgery.  My husband is meeting with a surgeon tomorrow about his surgery which will happen soon - but it sounds like your husband's is more emergent.  I'm sure some of the folks who have had the surgery and have already written in will be willing to give you more advice.  i wish you and your husband the best of luck.  Take care.

Posted 4/13/2008 12:50 PM (GMT 0)

thanks for the reply, they have brought the surgery forward to tuesday and the surgeon will only be able to speak to us on monday as he is away until then. the doctors said they cant really tell us much because they dont know much themselves! we had a scare last night when my significant other had servere chest pains and they considered taking him into theater. i also found out that the calcification is between 3mm and 8mm thick round most of his heart  (the majority is 8mm).

i think just writing it all down is helping me to cope a bit better.

Posted 4/14/2008 2:26 PM (GMT 0)
I stumbled across this discussion on the Google News alert I have set up for pericardiectomy.  I had a pericardiectomy on July 24, 2007 and am alive because of this surgery.  My story appears to be different than everyone else's here.  At the age of 40, I was diagnosed with Hodgkin's Lymphoma.  I underwent both chemotherapy and radiation.  While the treatments saved my life, the radiation caused damange to my pericardium.  It wasn't until 2004 that I came to understand that something was wrong.  After undergoing two bouts of what everyone thought was pleurisy, I found myself in the ER unable to breathe in spring of 2004.  I was in cardiac tamponade and my resting heart rate was around 125.  We later discovered that I had about a liter of fluid around my heart.

For 3 years, we did our best to manage my pericarditis with medications - toprol, furosemide, aldactone, potassium, naproxen.  But, as the years went on my conditions worsened.  Shortness of breath, swollen legs and feet, fluid pooling in my abdomen, achiness, fatigue, exhaustion, racing heart.  When I finally had to ask for a handicapped sticker for my car because I couldn't even walk from the parking lot to a store, I knew it was time to do something about it. 

My husband and I went to Mayo for a consult, but eventually opted to have the surgery done at Froedtert/Medical College of Wisconsin.  We had an absolutely fabulous cardiologist (who had been trained at the Cleveland Clinic) and cardiothoracic surgeon and felt comfortable going there.

On the day of surgery, my kidneys and liver were in desparate shape.  A 5 hour surgery showed that my pericardium was as thick as 10mm in points (should be around 1-5 mm) and was literally stuck to my heart.  While I would admit that my 3-1/2 days in intensive care were pretty lousy, by the time I moved to the regular cardiac floor, I was already feeling a whole lot better than I had in years.

Today, I am doing terrific.  We are in the process of weaning me off the diuretics.  Hopefully, I will only have to stay on metatoprol.  The doctors have been ecstatic with my progress and expect me to live a long healthy life.

I do have lung damage, but it's really hard to know if the pericarditis had anything to do with this condition or if radiation was the sole culprit.  Net, net, I have difficulty being around smokers and I'll never run in the Boston Marathon, but who does?  I just celebrated my 50th birthday last month and am thrilled to be alive!

Sue

Posted 4/20/2008 3:46 PM (GMT 0)

Hi Jokey,

 I had Pericardiectomy last June & all is well, A properly skilled Surgeon will do just fine for the Procedure, It is terrifying while you have to go through this but the other side of the surgery for your Partner will feel better everyday. Have Faith and we will all pray for success!!!!

                Steve

Posted 4/22/2008 10:43 PM (GMT 0)

Hi everyone, we have a new member who has posted on the main forum and I am placing her post here so that she may get some better responses.  Welcome to all our new members who are posting here on the Pericarditis thread...I haven't had a chance to introduce myself to each of you but we at Healing Well are so happy to have you join us here.  Keep posting!

LovingHeart1958 said...Hi Everyone

 

I am going to be going to the Mayo Clinic in Rochester, MN next week for an evaluation on having a pericardiectomy surgery..  I was diagnosed with pericarditis over 2 years ago and was put on prednisone and have had several flare ups over the last 2 years.  Had a CT scan done and this last time it showed some constrictive pericarditis.  I would truely appreciate it if anyone out there could tell me what I am in for and what to expect as far as the surgery and recovery goes.

Thank You,

Sincerely, Deb

Posted 4/23/2008 10:24 PM (GMT 0)

Hi Deb,

 Everyone is different but you can go  back through all the forums in the past to see how many people did with the Procedure, I personally was so worried and frightened but it turned out great, there was some pain from the surgery and a few issues for a while but 9 months later I am feeling awesome, all the people like Sherwood & Nan were awesome. I have an envelope on the side of my posts which will allow you to email directly if you wish. You are in good hands and have faith, write if you need to. Our prayers will be with you,

          Boog

Posted 4/24/2008 2:08 AM (GMT 0)
I posted here two years ago and our situation has not changed. Our son, age 25, has had pericarditis for eight years and only large doses of prednisone can keep it at bay. He has been placed on many other drugs with no success.

Anyhow, it does not appear that he currently has a constrictive pericarditis situation, only pain and the side effects of prednisone - which have been pretty devastating.

It appears that CP was the driver for most of the folks here who decided to undergo a pericardectomy. Would anyone who has had one recommend it in a case where a desire to get off of prednisone was the driver?

On a separate note, has anyone here ever been treated with Cellcept who was not afflicted with lupus? This is the latest in a very long line of drugs he will attempt to use as a way to decrease prednisone dependence but all my web searches don't seem to find a usage pattern in recurrent idiopathic pericarditis cases. They all seem to have a link to lupus.


Any feedback is greatly appreciated. It is so wonderful to find out you are not alone. This can be a very lonely disease.
Posted 4/25/2008 12:29 AM (GMT 0)
Hi Amy

I was just reading your story about your son and I am sorry to hear about his situation  I will certainly pray for him and that he will recover from this awful condition.  I was quite interested in what you mentioned about the cellcept.  I have not ever been told that it could be used to decrease prednisone dependency.  Did a doctor tell you that it could be???  I am currently taking cellcept 500 mg`s twice daily and have been on that since 2000.  I take it for a different reason but did not know that it can be used that way to decrease prednisone and I am on prednisone myself so you told some thing that I did not know.  I have been told that my pericarditis is due to an autoimmune disease but have not been confirmed yet to have Lupus although it does run in my family.  Cellcept is a terrible drug to take.  My Orthepedic will not do any knee surgery on me because of that drug I guess it lowers you immune system..  In my case I will never be able to get off cellcept so I am stuck with all the side effects.

Good luck to you and your son and if you would like to email back I would enjoy that

Sincerely, Debbie

Posted 4/25/2008 3:19 AM (GMT 0)

Hi Amy,

 I hope you can find an answer, but all the Dr's I went to around the Country said the same thing about Steroids and the bounce factor. can only imagine the pain as I have 2 boys   21 & 17 & my heart feels for you.  It feeks like a tough decision for anyone but the 1 thing all the Doctors said as I was considering the Procedure was " Quality of Life" .

 I was headed for a life of restricted activities and lots of pain & couldn't live like that. The last straw ( sort a speak) was My Pastor came to visit 1 night and asked me to accept being permanently disabled. It is such an emotional time for you. Pleas take your time & think every step & go to the right people for help. Feel free to write me direct if you want. Email envelope is on the left side of the page,

 Have faith,     Boog

Posted 5/3/2008 6:52 AM (GMT 0)
Hi everyone out here......just another oldie posting, letting all my comrades, old and new, know I am now 3.5 years (Dec 16, 2004) post surgery, and doing fine now, no real physcial limitations, other than I could stand to lose some weight...still taking lasix, potassium to prevent fluid buildup, but glad to be feeling the way I am, and blessed that my situation at the time (not employed) got me into some county-funded healthcare, and a referral to UCSF San Francisco, where I had my surgery done. Turns out, I ended up working there on campus for 2 years after the surgery! What a way to give back...anyways, feel free to get in touch, or if you just need some support. I'm here. God bless each and every one of you. Hello to Nan, I remember you from the old days!!!

Happy Spring...be strong...

Eric
Posted 5/29/2008 5:35 PM (GMT 0)
Hi everyone! I am going on 2 years post pericardectomy and it still hurts darn near everyday when I breathe. Sometimes worse than other times, but none the less painful. So much at times I know not to go out on a humid day or exert myself.

I went back to a MD I saw 6 months prior to my injury who actually is trying to figure out why I have pain. He tested my lungs and said they were working fine. He has ordered a chest xray and has referred me to another cardiologist.

I am still miffed by so many accounts of being fine after having a pericardectomy! Maybe I do have nerve damage. I do not believe it is pluerisy as one day it is there and the next not. It seems effected by the weather, yet it is not at the incision site ....only on the left side of my breast and at times above the heart.

Does anyone else have pain following the surgery?

I did not have this type of pain before the pericardectomy.

Thanks for any insight.

Also, I have not had to take any meds related to the heart. I think further evidence that I never had pericarditis. I am still trying to figure this all out!
Posted 6/2/2008 6:56 PM (GMT 0)
Hello all,

I am a 37 y/o male married with two boys, one just turning three and the other just turning two. They are 10 1/2 months apart. What fun.
My history is hodgkins lymphoma at 4 y/o with mantle radiation and a splenectomy, a thyroidectomy at 18 y/o, a pulmonary artery patch angioplasty at 25 y/o and finally a stent of my right coronary artery just about a month ago. I am not a stranger to surgeries nor "bad" news from doctors. I am still symptomatic with chest pressure and shortness of breath on minimal exerction. Now we are faced with a pericardictomy, triple bypass, and aortic valve replacement. Does anyone have any experience with surgeries from Dr. Schaff in the Mayo Clinic? How long was the recovery from your pericardictomy?

I am really fearful of this multi layered surgery. In the past I did not have my wife nor my boys, my parents and sister were there but survival is much more important and necessary now.

Please any help I appreciate.

Flyers.
Posted 6/9/2008 7:14 PM (GMT 0)
Hi Flyer, Have been waiting to see a reply from the USA [I am in UK]. However. no reply yet

so thought I'd just say a few words. My husband had a pericardiectomy and a double by-pass. I ncan't tell you how scared we were. He was 20years older than you but had always been fit and healthy and all of a sudden within 9 months he was this invalide who couldn't work, walk to the corner etc. He couldn't eat a full mel or bend to do up his shoes. I wish you could see him now! He is SO well. His liver had been affected slightly - that is how they first picked up the problem- but soon got back to normal once his heart was fixed. We were told the longfer it goes on the more danger of other organs being affected and hidering recovery. You have beaten so much already you can beat this.  My husband was really sore for 2 or 3 weeks but was walking increasingly long distances after 10 days. Now it is just like a bad dream. Read all the stories from people like Nan, Boog and take heart [Oops didn't mean that!] Looking forward to reading your entry when you tell us it was a doddle!X

Posted 6/15/2008 2:55 PM (GMT 0)
Hello Flyers...

My name is Nan and I had a pericardiectomy by Dr. Schaff in 2004.  My research at that time showed him to be the best of the best.  My friends that had worked at Mayo said his reputation was amazing.  I was definitely happy with my result.  I had constrictive pericarditis...I was 35 at that time...one 5 year old daughter and an 18 month old son (not being able to pick him up for 12 weeks was the hardest part of the recovery).  My symptoms had been going on for about 3 years...stumped the local docs and I finally insisted on a second opinion at Mayo.  Took them about 10 minutes to figure out and I was scheduled for surgery within a month.  I felt better immediately on waking up.  Recovery was tough but not unbearable.  I didn't have the extras that you are looking at...but getting on the other side of it is such a relief that it seems easier to take one day at a time for recovery knowing each day is better vs. worse.  I'm happy to share my story if it helps...but I was very happy with Dr. Schaff.  I wish you all the best...

Nan

Posted 6/15/2008 3:08 PM (GMT 0)

Eric...Great to read about you again!  Glad you checked in and glad all is going well for you!  You and I had surgery within days of each other...

Heartaches...I haven't read far enough back to remember where you had your surgery done.  Have you gone to a specialist at a large heart facility?  Mayo?  Cleveland?  Is there somewhere close to you?  I'm thankful the docs here didn't figure me out which forced me to go to Mayo where they deal with pericarditis all the time.  I have not had pain after surgery...or had to take any heart related meds...it just makes me think there has to be an answer for you!  I hope you find relief soon...but I would encourage you to drive, fly, walk to a specialist who sees this often...it makes a huge difference.

Deb...as you can read from my posts...I also had my care at Mayo in Rochester.  I was very happy with the result.  The one thing I would change would be to insist on cardiac rehab for monitored activity during recovery...I should have done that. 

Take care everyone...I'm happy to help anyway I can.

Nan

Posted 6/20/2008 9:13 PM (GMT 0)
Hello Flyers,

 I decided to check in & read your post , feel free towrite direct anythime, click the little envelope near my message if you wish.

 I had multi task surgery (Stripping, Maze) 1 year ago & things are great. I was consulting with the Mayo but went with DR Gaudiani out here in the Bay Area. He is kind of the local Guru on the west Coast for the real problem cases. He did what everyone else at 4 other instituions said couldn't be done. The Mayo was my second choice. Everything is awesome for me know & the other contributors like Nan & Sherwood made it possible for me to go forward. ( cancelled the procedure 3x)

 The head of Electrophysiology at Cleveland Clinic said Gaudiani was who he would use since it was such a difficult case.

 Sherwood is right, earlier the better, I have 2 sons & a beautiful wife who was battling Cancer at the same time, I couldn't live disabled!

 You too will hopefully find some one who will get this fixed for you.

 I hope to hear how things progress.

           Boog

 

Posted 6/24/2008 2:41 AM (GMT 0)
Hi everyone,
I posted earlier this year, about my husband's CP.
Believe it or not......We are still in the process of finding a surgeon to perform this surgery. We spoke with one office today that told my husband that no one does this procedure without going thru the sternum. According to other posts here, I see that the surgeons office is mistaken. This both disappoints and worries us to hear them say, this when clearly I see it is done under the breast, too.
We are still looking for a local cardiologist that is familiar with CP, and have yet to find one in the Southern California area. I called Dr. Robert Seigel (some kind person on this board recommended him to me) and his office requested that I send them an email requesting an appointment. Still have not heard back from that office. We are having such a hard time finding a cardiologist that is well versed and familiar with CP. It's very frustrating when you have been diagnosed- and then cannot find the proper medical care. If anyone has a some suggestions. I have sent my husbands medical history and scans on CD's disc's to the surgeon's office that I mentioned above, and to a surgeon at the Cleveland Clinic. We are just waiting.... which is frustrating... and still looking for a knowledgeable cardiologist in our area. Any suggestions would be greatly appreciate!
Thanks!
LRC
Posted 6/24/2008 1:50 PM (GMT 0)

Hi LRC,

 You can read some of my earlier posts, but I traveled all over the Country & found Dr Gaudiani right here in Nor Cal     This guy is tremendous, my situation had many difficult circumstances & I am 1 year past & my life is like this never happened to me. I hope you find somebdy soon & get back to living, All the best ,

            Boog

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