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Pericarditis & Pericardiectomy- CLOSED THREAD

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Posted 12/31/2008 1:07 PM (GMT 0)
Thank you to all of those who have made posts to this forum.

I came across this forum a year ago when the doctors recommended I get a pericardiectomy. Considering this is an uncommon procedure, it was hard to find someone other than a doctor to talk about the pros and cons, what to expect, etc. It was very comforting to come across this forum of fellow patients who faced or are facing constrictive pericarditis.

It seems as though everyone experiences a different set of symptoms caused by their constrictive pericarditis. I did not find anyone having the exact symptoms as mine but I did see enough similar situations that made me confident to proceed with the surgery.

Now that nearly a year has passed since my surgery, I want to share my experience to help future patients who have similar symptoms to mine decide whether or not they should proceed with surgery.

My constrictive pericarditis was caused by viral myocarditis. Within days of returning from my honeymoon, I became unusually sick. Unfortunately, it took several months to correctly identify the problem. Viral attacks on the heart are rare and thus it is fairly uncommon for doctors to suspect it in young adults. (Fortunately, there are a handful of high profile patients like the singer Toni Braxton who are trying to raise the awareness among doctors.)

Once I began a treatment for viral myocarditis, I continued to have symptoms and test results that baffled the doctors. Some tests, like the heart catheterization, would show I had signs of constrictive pericarditis caused by the viral attack. Other tests, like the cardio mri, indicated I did not have constrictive pericarditis. My doctors at Scripps Clinic in San Diego and the Cleveland Clinic, where I got a 2nd opinion, all scratched their heads on my conflicting test results.

As for symptoms, a lot (but not all) of my energy had returned after being treated for the viral myocarditis. However, despite the increasing amounts of lasix I took, my feet and ankles continued to swell. That was a concern for the doctors because I was taking a very high dosage. My greater concern was my inability to walk much at all, especially after eating. I always got a knot in the upper abdominal area just below my breastbone, when I would go for a walk. The more I tried to walk, the more the knot would grow and the harder it became to breathe. Some days were worse than others. This made it very difficult to get much exercise or go out-and-about. (I didn't go to a shopping mall the entire time.) The only time the knot didn't form was when I had a completely empty stomach. So, I would workout and go for a walk as soon as I woke up in the morning. The doctors could not understand why I had this condition and I did not find other patients in this forum having a similar symptom. For me, this is the only symptom I was concerned about. If I knew this symptom would be gone after a pericardiectomy, I would have no problem at all committing to the surgery. However, nobody could say for sure since no one had seen this symptom before. (It is the sharing of this symptom that I hope someone else may find of help when debating whether to go through with a pericardiectomy.)

Other than the upper abdominal pressure, I had adjusted to living with the symptoms, such as a lack of energy and swollen ankles. However, I proceeded with the surgery on the advice of my doctors and the hope of eliminating my upper abdominal pressure.

The procedure went smoothly. I also received a new tricuspid valve. (It was leaking slightly due to the viral attack but then leaked a lot more once the pericardial sac was removed and the heart found new life to start beating without restriction.) I had originally planned to stay in the hospital up to a week for recovery. However, I continued to drain excess fluids from my chest tubes so I ended up staying two weeks. (I have a suspicion that I was retaining more fluid in my upper body than tests were indicating and that this fluid build-up was pressing against some internal walls and causing the upper abdominal pressure.)

My excess fluid did not disappear immediately thereafter but did gradually dissipate. I am happy to report that I was finally able to stop taking lasix a month ago. I have also been taken off all of my other medications except one. No more ankle swelling. And, most important to me, no upper abdominal pressure. Not only can I go for a walk with my wife in the evening, I am able to run a mile in eight minutes and three miles in thirty minutes. Also, considering the fact they opened my chest for the surgery, I'm impressed that I can nearly bench press my own body weight and do 50+ push-ups. I have plenty of energy to do everything I want to do. And now, the real honeymoon for my wife and me is just beginning, more than four years after we were married.

I wish anyone who has constrictive pericarditis the same success and luck I have experienced.

Happy New Year.
Posted 1/2/2009 12:37 AM (GMT 0)
San Diego - Thank you so much for sharing your story. I'm so glad that your recovery has been so successful and complete!
Posted 1/5/2009 2:00 AM (GMT 0)
Dear Help12345 ...

My wife and I post under this ID... I am the one who had a pericardectomy 3 weeks ago. My wife is the one who has been an awesome research consultant, networker, and caregiver. If you look back at some of the posts under "friscofive" you will see a description of symptoms that are very close to yours.

To recap: I am 48 years old male with limited medical troubles until pericarditis and athletically active up until April 2006 when a large pericardial effusion was discovered. I had a window procedure to drain 1 liter of fluid (then spent 6 days in the hospital trying to get the fluid creation to stop). I attempted to regain my former form of easily running 3 plus miles, playing ice hockey, etc. after a few months. My attempts came-up way short of expectations...my body usually started shutting down 5 minutes into a run. I kept attempting to move past that, but had limited success. Slightly more than a year ago, my breathing was short enough to begin doctor visits and testing to determine cause.

The problem was my symptoms and test results were not so conclusive for my cardiologist (2nd of two very good cardiologists) that she could make a guaranteed call on it. MRI showed thickness at the high edge of normal (although you see in the forum that experience normally is thicker than MRI image). My Ecos showed Atrial dialation, but my pressures on a normal heart cath were not off. I had a second heart cath that used a fluid load to get results. It indicated constriction, but not in a super definitive way. I had a cardio-pulmonary test (CPX) where I performed at a higher level than normal patients (i.e., I went a full 16 minutes on a treadmill with good pulmonary results). My stroke volume was on the low edge of normal, but pointed to a problem.

In everyday life though, I was beginning to have breath shortening about mid-way through a 1 mile walk (not run). Other slight elevations in activity were creating breathing difficulty. There was a problem and only one real cause to point to.

After my cardiologist made the call of "constrictive pericarditis" in mid-November (this was the second time it was concluded I needed surgery), my wife and I decided to move ahead with it. I was ready to get the problem behind me and my family...and my family was ready to get it behind us.

I had surgery on December 10th, 2008, so I am currently 3 weeks post-Op. I am healing well .... I have better regular breathing than I have had in years. I am walking daily (or riding recumbent stationary bike) and getting excited about getting back to the athletic activity I regularly did before this condition.

Although I came out of the surgery saying (or so I am told because I don't remember)... "why would anyone want to have this surgery....swear, swear..." ... It was what I needed. The surgeon confirmed I had a thick pericardium (3-5 mm), with adhesion to the heart muscle and (what had not been mentioned in research) I had a thin film layer that the surgeon at UT-Southwestern in Dallas had mentioned was possible.

So far, I believe I am going to be very happy. There really was no choice. I was not going to live the way I was. If there is any shortening of life expectancy, that's just part of it. We will all go only so far ...

I hope you can find some good professionals to consult with. It is a condition that is not common these days.

I will check back soon to see if you'd like more background on my case.

All the best to you...

Thanks to all who commented back on the posts me and my wife put out on this forum...

Friscofive
Posted 1/11/2009 10:04 PM (GMT 0)
Hi everyone,

I have been undergoing tons of testing to determine any underlying cause for pulmonary hypertension. I have undergone the cardiac MRI and am waiting to get into the dr. to find out the results. No other cause has been found for this rare disease which effects 1 -2 out of a million people. There is no family history. I will let you know what I find out from the cardiac MRI.

Glad to hear all is going well with you all!
Posted 1/11/2009 10:10 PM (GMT 0)
I just wanted to add that I suspect and at least one of my drs that the pericardectomy may be the cause for my pulmonary hypertension. Pulmonary hypertension has left me short of breath and continued chest pain. I went 3 years following my pericardectomy before being diagnosed with pulmonary hypertension and it has been 6 months of testing to find the cause.

I did run across a site which said the chinese believe the pericardium protects one from fear from the heart and anxiety from the lungs. The pericardium is an important organ if removed without justification as mine was. Just so some money hungry dr could make an extra buck!
Posted 2/4/2009 12:38 AM (GMT 0)
Hello everyone!

Just checking in...it has been a while since I have posted, but I'm still very interested in others going through this process and willing to share my story if it helps.

I'm now 4 years (can't believe it!) post my pericardiectomy, which was done at Mayo in Rochester.  I was 35 at the time.  Recovery was about 7 weeks but nothing compared to my symptoms which have never returned.  I did have some hypothyroid develop after surgery but that seems to have resolved which is weird.  We are dealing with some infertility issues and of course I'm wondering if it's related to all of this and if my heart just couldn't take a pregnancy even though I feel fine.

Anyone else have info on pregnancy after pericardectomy?

I'm happy to talk with anyone if it is helpful.

Take care...Nan

Posted 2/4/2009 3:59 AM (GMT 0)
Hi,

I am a 24 year old female getting ready to have a Pericardectomy at Duke University, and am curious as to how long i will be in hospital, what the pain is like after surgery and what kind of timeline I am looking at before i can return to exercise? I hav had 3 open heart surgery's in the past 2 years, so open heart surgery is a old friend, but i have been told this is a bigger and more painful surgery and i am looking for some insight into other peoples experiences.

I had my first open heart at 21 to close a ASD, got my first bout of pericarditis 4 months post op and have had it 27 times since. Unknow reasons. I am on Cellcept, methotrexate, prednisone and ibprofen just to keep it at bay. I still flare around every 4 months on these meds. I have had the trimetalone placed around my heart and that was unsuccesful. Also had a window placed and biopsy's done which showed only imflamation. Due to the meds after this surgery my incsion did not heal and i had an open hole in my chest for 4 months. Could literally look in and see my heart beating, after my heart got infected due to the hole, i went into V-tach and had to be resucitated 3 times. Fun times, i am told now that this surgery is a potential cure and will get me off all these meds. I am also a nurse so i have found that knowlegde is not always bliss.

I noticed some people on here were asking about the trimetalone procedure as well as the cellcept. I will be willing to answer any questions if i can be of any help to anyone, then my illness will have a positive effect on someone. Also if anyone has any specifics on the post op recovery after pericardectomy please let me know the details. I have read alot of posts and replys on here and am looking for more details.

Thanks and im glad to have found this site

Posted 2/5/2009 4:57 AM (GMT 0)

Hi Lady...

I was in the hospital for 5 days...pain was not terrible, just felt fragile with the sternum cut and all of the tubes.  I think after 3 weeks I was feeling pretty great out for walks etc but needed 6 weeks to feel "recovered".  I think it took almost a year for my sternum to feel totally healed but not in a painful way.

My symptoms were pretty bad by the time I had surgery so I felt relief almost immediately. All of the above was no big deal compared to my head feeling like it was going to blow up and my neck looking like it was going to explode.

I'll be thinking of you...let me know if you have any more questions.  I found this site right before my surgery and it was a huge comfort to read the details of others' surgeries!

Nan

Posted 2/8/2009 6:16 PM (GMT 0)
Hi all! I spent 2 weeks in the hospital after my pericardectomy. It was the worst pain ever compared with gallbladder attack, kidney stones, and childbirth! But I don't think my surgeon had any business doing what he did, inexperienced I mean! I am sure yours will be ok, if you need it ! Take care!
Posted 2/21/2009 5:34 PM (GMT 0)
Hello,

Thanks to everyone for this informative and supportive message board!!  And a special thanks to the "old timers" who have been through it all and continue to check back and lend support and advice.  It must be temping to want to move on and forget about the whole thing.

I found this site after my wife was diagnosed with CP about a week ago.  She had pericarditis last year and has been suffering from fatigue, swelling, and shortness of breath for the last few months.  Her MRI found that the pericardium was about 6mm, and she is scheduled for a heart catheterization to confirm the diagnosis in a couple of weeks.  If confirmed, we would look to have the surgery sometime in April.  We are a little freaked out as I guess most people are when they get the news and discover the limited options.

So, here are my questions and I hope someone can help. 

Is it the consensus of those who have had the surgery that it's best to have it done at Mayo or Cleveland?  Some have told us that the surgery is not that complicated, but we still have the impression from reading postings and talking to at least one cardiologist that it is best to have it done at one of these hospitals. 

Is there anyway to know how many times a procedure has been done at a particular hospital?

Has anyone had the procedure done at Penn in Philadelphia?  Or Johns Hopkins? And if so, by whom?  We are in the middle of trying to decide whether we should travel or have it done closer to home.

So, I'm sure that we'll come up with more questions in the coming weeks and I want to thank everyone in advance for the help and advice.  It is much appreciated. 

Merl

Posted 2/22/2009 12:58 PM (GMT 0)
Hi I am posting from the UK and over here we were advised to go to a surgeon who had done this op lots of times as it was fiddly and skilled. We wanted to go to a man in London we knew had done a lot but my husband's cardiologist said 'No you need to be here and have your family close by' He recommended a surgeon who had worked in Iran and had done loads of pericardiectomy there because TB had been rife and can cause the pericardium to sort of calcify. I think a lot depends on gut instinct too. My husband met the surgeon and just felt that he would be OK with him and he was. Good luck-I know from experience how bad it is for you watching the person you love the most. I can remember getting in the shower every day and crying where no-one could see me! I was right for the day then so be strong, chin up and take heart from all the people here who have had it done and are leading a full life now, hope you get some help re choice over there. X

Posted 2/22/2009 1:47 PM (GMT 0)

Hi

Attn Bennybagona

I'm a new member and I'm in Australia which I notice bennybegona is too though he's only posted once. As I'm not in the US the threads re Mayo and Cleveland aren't much help to me,  but I wanted to get in touch wuith bennybegona in Oz who appears to have a similar experience to mine. ie arthritis symptoms and pericarditis. Also I've had pneumonia and pleurisy and a lot of upper respiratory infections in past so suspect a viral cause. Anyone found they've been tested positive for the coxsackieB virus?

Any other members in Oz, specifically Sydney?? I note that those in the US seem happy with results of pericardotomy procedures but would like to hear from anyone in Oz - may not be the same story here. Also has anyone tried taking serrapeptase as an anti-inflammatory instead of the usual toxic NSAIDs etc.

Thanks in anticipation for any help. THis is a great find as there's a total lack of information out there. Just lucky to stumble across this site by googling.

Karen (Aussiek)

Posted 2/23/2009 3:29 AM (GMT 0)

Hi Merl...

Welcome...sorry to hear you are going through all of this.  My experience was at Mayo.  At that time 2004 they told us they did more pericardiectomies there than anywhere in the world and that was only 65 a year.  If you are wondering...ask straight out to your surgeon...how many of these have you done?  You deserve to know.  I would definitely echo the advice to go somewhere that has experience  in this surgery.  Travel can be difficult and expensive but it's worth it for your health.  I know Mayo has very reasonable places to stay.  I've talked to several people here that had good results at Cleveland too.  I don't know much about Hopkins but don't be afraid to ask questions.

Feel free to email or post again with any questions...I'm happy to help!

Nan

Posted 2/25/2009 3:33 AM (GMT 0)
Thank you Sherwood and Nan,

We truly appreciate your advice and support.  We have an appointment with a local surgeon at Penn next week, and I guess we will decide how to proceed from there.  We are also going to get a second opinion from someone at the Cleveland Clinic. 

Nan - it's not so much the expense as the inconvenience of traveling that concerns us.  I think we both like the idea of having friends and relatives nearby to lend support.  Still, we obviously want the best care and best results and we will certainly travel if we're not comfortable with the local guy.  We will definitely ask lots of questions and try to sort things out from there. Did I read that you are from California?  Were you unable to find an experienced surgeon there?  Thanks again for you thoughts and support - I feel like we have gotten to "know" some of you having read so many of the postings.  Your stories are comforting and reassuring.

Merl 

Posted 2/25/2009 2:38 PM (GMT 0)

Hi Merl...

I think it is wise to see your guy...ask lots of questions...and get a second opinion.  Second opinions either give you more confidence in your first choice or give you more options...it's a win win.  I live in ND...we have a big cardiac hospital here but they missed the diagnosis after over a year of looking.  Luckily we are driving distance to Mayo so we were fortunate to end up with one of the best.  Our cardiologist invented the procedure with echo to diagnose CP without the angio.  It was very cool.  We brought my parents along for moral support...it is more difficult for family members than the patient I believe.  I was high on pain meds and the whole hospital stay is a bit blurry.  But time marches on real time for family members so moral support is good. 

Keep us posted.  I wish you the best!

Nan

Posted 2/27/2009 11:37 PM (GMT 0)
Hi, I'm posting from the north of England and I am due to have a pericardiectomy in 6 to 8 weeks at the Freeman Hospital in Newcastle. I have CP from a viral illness after returning from holiday last March. The doctors also think that it may have started before from radiotherapy I had to my chest 26 years ago for lymphoma. Thankyou for this thread, just reading your stories gives me the inspiration to go ahead with the surgery.
Posted 2/28/2009 12:31 AM (GMT 0)
Good luck...you will feel so much better!

Nan
Posted 2/28/2009 4:29 PM (GMT 0)
Hi Spangles, Can't believe your history! My husband also picked up a viral illness, also in March and had his op the following January. He was 57 so not the right age for pericarditis and it absolutely galloped away! No-one could believe how quickly the pericardium thickened. We were so scared and got great comfort from this site especially people like Nan who had faced it so bravely with a young family. All the best we will be willing you on. I think we are lucky in the UK as most of us have a hospital specialising in heart surgery within a reasonable distance. Won't be long until you are posting encouragement to others here! Chin up XXX

Posted 2/28/2009 9:53 PM (GMT 0)
Thanks Nan and Sherwood for your support and encouragement. It's amazing how alone this condition makes you feel, and with the prospect of open heart surgery in the very near future it's scarey too. I have lots of family and friend support but it's really great to share the experience with people who know what it's like to go through this.

spangles
Posted 3/9/2009 8:43 PM (GMT 0)
I was diagnosed with pericarditis in February, sent home from the hospital, rested well, took naproxen for pain, etc.

I stopped taking the Naproxen after pain subsided, but then continued to have a low grade fever and feelings of weakness, with exhaustion after exertion.

Does the low grade fever continue like this until the pericarditis virus works its way out of your system?

Does the exhaustion last long ... because it's March and I still get tired easily?

 

Posted 3/10/2009 1:13 AM (GMT 0)

Hello all,

Well, my wife had her cath last week and we met with the local surgeon.  We still have questions about the surgeon and I'm wondering if others can help.  Mainly, we are trying to figure out if this guy has enough experience in the procedure, so does anyone remember how many times their surgeon had done the operation?  How many would a reasonably experienced surgeon have done? 

Thanks to everyone for their help and support.

Merl

Posted 4/22/2009 9:08 PM (GMT 0)
I do hope you guy's haven't gone away as i've actually got word to go for my pre-assessment Wednesday 29th of April. So things are finally happening. Please come back I need you!

Spangles xx
Posted 4/23/2009 12:39 PM (GMT 0)
Hi Spangles! Just whistle and I'll come running! Great news that things are moving at last. We both felt somehow more relaxed about it all once we had a date for the op and pre-op tests were underway. Also v. reassured as so many tests were done to ensure my husband was not carrying any infections on his skin etc and was as fit as possible for surgery. Sounds daft to say that but you know what I mean. We have just come back from USA where we had a great time touring Disney. He couldn't have done it pre-op. Soon be over now and you will feel so good. Chin up! X

Posted 4/24/2009 10:17 PM (GMT 0)
Hi Sherwood it was great to here from you again. Its been an amazing day for me-here is how it started, I was having a routine thyroid check this morning and mentioned that I was about to have heart surgery for CP to the healthcare while she was taking my blood and she said 'oh my uncle has had that done'. Anyway to cut a long story short she rang him this afternoon to ask if it was ok to give me his number. So we were on the phone for about an hour,I spoke to his wife first who told me that she had gone through everything with him, she reminded me so much of your situation. They were both so supportive and said that I could call anytime. He had his op 8yrs ago without being put on the bipass machine and said that his surgeon didn,t believe in it. Sherwood was your husband put on bypass? are their any added risks that you know of?

Spangles x
Posted 4/26/2009 3:43 PM (GMT 0)
Hi Spangles, I am SOOO pleased you have found some local support. There is nothing like speaking to someone who knows first hand what it's like. Yes, my husband did go on a by-pass machine. His pericardium was v. thick and firmly stuck and the surgeon said he wanted to be able to really get it all without worrying about handling the heart etc. There are pros and cons for the by-pass. If you want to know them I'll list the ones I know of but it might really give you the habdabs! I asked prior to my husband's op. cos I was so sacred of the idea of them stopping and starting his heart [I'm a nurse so knew enough to scare me but not enough about such a specialised subject] He said it wasn't likely but after the op when he told me how it had gone etc he mentioned the by-pass and when I was surprised said he always meant to use it just didn't want me to fret! He also did a double by pass not because my husband had had any symptoms or incidents but as his asteries were a bit furry and a family history of MI he thought he may as well while he was in there! Lens a whole new meaning to BOGOF doesn't it? Let us know when you have a date. XXX
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