Pericarditis & Pericardiectomy- CLOSED THREAD

Hi everyone! I had a pericardectomy a year and 1/2 ago. My husband hit me in the chest and damaged my pericardium. I went a year and a half before seeking medical attention. I thought he had just bruised my heart as it ached for 2 months afterward.

Well, my health deteriated and finally I could barely breath so I went to Ar Heart Hosp where they preformed 2 surgeries. First they drained the fluid out as I had cardiac tampanade. Then a month later they said I needed a pericardectomy. I was not told what my life would be like after the surgery.

I have pain in my heart when it rains or is very humid. I get pains if I get too upset and my heart beats too fast. They say the regurgitation is only min. but I feel it.

I feel my doctor first did an underestimation of my condition and then an over kill

I feel I have been lied to and mislead and the pericardectomy was not necessary. As if he just wanted to preform it. It was a horrible surgery and now I am left with all these questions which go unanswered by my drs.

I was very athletic and now I am afraid to run and do anything.

I have looked before for sites, but this is the first I have ever found about my surgery and the after effects.

PLease write to me and share with me your experiences. I am very sad that I allowed the dr to do the pericardectomy, because my life is not the same.

Thanks!

Hi Sherwood,
Thank you for your reply. I guess I did not explain myself well enough. I had trauma, physical nature, which caused blood and water to slowly leak in between the pericardium and heart. This caused cardiac tamponade over the year. I never had a fever and although I had pain in my heart, it lasted for only a couple months. I thought when my husband hit me, (he stopped my heart from beating), had just bruised my heart.

You made the comment "I am sorry ...your heart has flarred up again." MY heart was never inflammed until after the surgery. I did not have any trouble with my heart and did not have pericarditis the way you think of it. I just had an injury and the EKG did not show pericarditis until after my surgery to drain the fluids. THen because the doctor did not put in a window and the damage was still real from the impact, the fluid filled in again between the heart and pericardium.

The pain I have has been consistent since my second surgery when the pericardectomy. Of course the surgical entrances and ...have lessened, but the pain from breathing and my lungs pressing in on my heart remains. This was never a symptom until after the surgery. Also since the second surgery my heart has regurgitation, and further trauma.

One more thing you have to realize is I had cardiac tamponade which is an emergency condition which was preventing my heart from pumping as there was no room for it to move due to the blood and water. This became an emergency situation as I could not breathe, until the fluids were drained.

The problem is a window in the pericardium could have fixed it where could have breathed, but instead of admitting he didn't do that the first time, he said he had to take off the entire pericardium.

Most people die instantly or nearly instantly and I am lucky to be alive. However, I did not need my entire pericardium removed as only part of it was damaged and unable to heal itself, causing drainage and cardiac tamponade.

When I ask my drs if I can run and play sports again, they say no. I only have the back of my pericardium holding my hear in place. I can feel my heart move when I turn over in bed and it is not a good feeling. I am afraid the movement will cause my heart's few muscles to give way and my arteries to become damaged.

MY heart was never flaring up as in pericardia, although that was the diagnosis. I think it was for lack of a better, more specific to an injury one.

If anyone who knows if my fears of running and active movement are justified or not please let me know. Also if anyone knows if the pain from my lungs pressing on my heart can be determintal or fatal from the pain if I extend myself.

Thank you!





i could breathe

You have chosen your name so well heartache! Sounds like you have been through some REAL heartache. I wonder whether the bleeding was what caused constriction as it sometimes can after abdominal surgery? Whatever did it it sounds as if you need some explanations and maybe a second opinion. My husband has never been aware of any difference since he had his op other than being able to do all the things his heart failure was stopping before and he was actively encouraged to excercise. It does sound as if they dived in awful quick to start surgery. It's a lonely place to be when you know things aren't right but I got so much comfort from the folk on this site and I hope you will be able to get some answers. X

Oh, I am so thankful to have found this site. I am a new member as of today. My story is a bit different than some of yours but the symptoms are very much the same. When I was 25 years old after the birth of my first daughter (I have 4 by the way and 2 grandaughters), I had open heart surgery for an ASD (atrial septal defect). A few days later just prior to going home, my heart started pausing and stopping for split seconds. So I spent 3 more weeks in the hospital along with getting a pacer implanted. Over the next 26 years, I remained very active, went on to have 3 more daughters and other than episodes of arrythmias, lead a fairly normal life. Just over two years ago, everything changed. I was in the shower washing my hair when my left arm went numb. I thought it was due to a pulled muscle or something. I went about my day still having numbness in my left arm. I even went to a nearby home improvement store but when it came down to signing my name on the debit slip....I couldn't even grasp the pen enough to write my signature. Still thinking it was a pulled muscle or a pinched nerve, I decided to take a trip to the local hospital and be seen in the ER. Long story short, it was discovered that I had three large blood clots in my arm cutting off blood supply. So into surgery I went. When I awoke my surgeon asked me how long I had been plagued with AF (atrial fibrilliatin). I told him that as far as I knew, I did not have it. I had been seen many many times in the ER with symptoms but by the time I had the EKG's it never showed up. Well, the AF is what caused the blood clots. he good thing is that the clots went down and not to the brain. The bad thing is that it started me on a road to dealing with things I had never dealt with before. Shortly after surgery, I began feeling short of breath, feeling dizzy, chest pain and sheer exhaustion. I was diagnosed with CHF on top of the AF. I went from taking one pill a day for the arrythmias, to taking 10 different medications. Some of which made me extremely sick and some of which made me extremely anxious.

The above is how I got to the place I am now. The AF was a direct result of the surgery I had 26 years ago. Also as a direct result came constrictive pericarditis of which no one told me could be a complication of open heart surgery. I have not recovered in the past two and 1/2 years. While I make the best of it, I can no longer get on a dance floor, I can't play basketball with my 15 year old daughter, I continue to have chest pain with exertion and I go to bed at night praying that I will wake up in the morning. I have made the decision to go to the Mayo Clinic in Rochester in April for a consultation. My current cardiologist here in Portland Oregon has told me great things about a certain doctor there. Truth is I am teriffied that this surgery could be inevidable and am very scared to be so far away from my family should it be necessary to have it done.

You all are so brave. Reading your testimonies of what you have all gone through gives me the hope I need to go into this with a little more understanding and a lot less fear. Reading the few things I have read make it seem like this surgery is soooo risky and the mortality rate so high, I have been hesitant to even allow myself to think that I would even consider it as a possibility. But all of your encouraging postings have changed my mind. If this is truly what needs to be done, then we will go forth.

Please....I am anxious to hear more from any of you as to how you felt when diagnosed, how long the surgery was and how the recovery was. I want as much information as possible. I believe the knowledge is power.

I look forward to your replies. (PS, my chosen name is the name of a song I sing to my grandbabies) I couldn't think of anything else!

welcome to healing well loftness1,  I hope you find the answers and support that you are seeking here.  This is a wonderful site with many caring people always willing to help.  Please do visit often and know you are always welcome to post as often as you like.

Take care

Hi Prettybaby-Isang that to my grand-daughter too! I don't know if you have found the previous thread to this one Pericarditis Part 7? If not go and look at postings by Boog. He had AF too and was in a bad way. Constrictive pericarditis had been caused by treatment for AF anyway he had a Maze done at same time as pericardium stripped and his story is all there and might help you to read it. All I can say is look at all these people that made it and you will too. Try and believe it. XX

Hi all! I think you are doing the right thing by going to a cleveland or mayo clinic. I think it was the first time my doc ever did a pericardectomy and I don't thiink mine was necessary. I tried to get in to someone for a second opinion but while I was waiting the week I had so much fluid build up it became an emergency situation and then desperate to breathe agreed. I never heard that they could send you home with the tubes draining, although they pulled mine the second they barely stopped.

I am amazed that you all had so much time to deal with your questions and mine was oh you got it and next day surgery and oh back again a week later oh need to do it now!

The origin of the problem must be the difference.

The one thing that seems so common is how young we are to have to go through this.

Well, I am unfamiliar with alot of what you have written.

So, I don't know what to think or say. Except it sucks!

Sorry, but now the man who caused all of my heart problems is suing me for custody as I moved 4 hrs. away to go to school since I can't do anything else!

Hi - my first post also. My husband was finallydiagnosed with Constrictive Pericarditis about a month ago. He is 47 and otherwise healthy. He had a "viral" very large, bloody pericardial effusion almost 2 years ago - which they say had apparently gradually come about, since it was so large. They drained 1+liters of bloody fluid from a window and it drained for 5 days in the hospital. Since they couldnt figure out any specific cause, they said it was very likely "viral" in origin. In fact, the same week as the window procedure, he actually played an ice hockey game - which the drs thought was pretty amazing. *(BEFORE the procedure - even though he was very short of breath). In the months after the window procedure and a few bouts with Afib he gradually became active again, though never again was able to have the same level of "fitness". This last Thanksgiving his symptoms returned and it took almost 2 months to get the diagnosis. He was diagnosed at one point with "Asthma" yet he could feel in his chest a pressure but not quite a pain. He now has a very high resting heart rate, gets fatigued quickly, and is on a tapering dose of Prednisone. He is working, but not exercising. He feels much more "compression" and heart palpitations if he drives a bucket-seat car. So, there is talk of Pericardiectomy. We have done very much research at this point. We are in the Dallas Tx area and have a great surgeon but he has only done these surgeries only about once every 2 years. We have searched for someone who does them more frequently (we know the surgery is relatively rare) but have gotten no answers.

Question: for those of you who have had to travel several states to have the surgery - what did you do once released? How hard was it to travel back home post-pericardiectomy?
My husband thinks he should just have the surgery with the local guy who doesn't do the surgeries that often since he likes them and the surgery would be at a new Heart hospital....I think he should seek another opinion even if it is to confirm the first diagnosis.

We very much appreciate all of the knowledge gained through the forum - I've ready eveything so far. Knowledge = "power".

My husband was also told it was a high risk operation and he should wait until he had no choice. Because he was young and very active it only took a short while of ill health for him to decide he couldn't live like that and so he opted to take a risk. Once he talked to the surgeon it seemed because he was young, non smoker, slim and had been very fit until the pericarditis the risks, although high, were not as high as we thought. It's easy to say after the event but I would say don't let your health become so bad you are in liver and kidney failure etc. I did read was back about someone who had had to fly to the clinic for the op. The hospital wanted them to stay in an extra couple of days because of the flight home. I think that must be hard though. I drove my husband home as if I had eggshells in the car and he had a pillow to cushion him under the seatbelt. I was Terrified someone would make me brake sharply. That was just a 35 min drive! This is the worstbit for everyone the waiting. Once the decision to operate was made and we said all we needed to and got sorted it seemed easier to cope. Good luck all.

Frisco...

For my input...we went to Mayo in MN and I'm SOO glad we did. I think it's so important to have an experienced surgeon for this procedure. We've heard many good things on this thread about Cleveland as well...we had a 6 hour drive after surgery and it went fine. I was "fragile" but not in very much pain. Cathy/Storrie on this thread flew to Cleveland from Las Vegas for her surgery and that seemed to go fine too...

Good luck to you....let me know if I can be of any help...

Nan

thanks Nan2 and Sherwood for the info....and thanks Nan for the email reply. I think my husband is going to pursue a 2nd opinion at the Houston DeBakey Heart Center - so much closer for us! Anyone out there have any info re this center for Pericardiectomy?

Hi All,

 I have been selfish with my time since my Surgery 7 months ago. I haven't checked in for quite a while and I used to read this site daily for any advice or increased knowledge about my condition.

 Heartache, I am so sorry about your pain & I really don't know why the Pericardial pain would continue after it was removed. I was told over & over by UCSF, Stanford & the Mayo that i didn't need it, after my Maze Pericardiectomy I am about 90% at 7 months, running 10k races albeit slowly (51 yearsold) and doing everything except high contact sports. I hope you find what the problem is, don't give up, someone out there has got to have an answer. It took me 2 years to find someone who could fix me.

Frisco five,

 I am here in the Bay Area & I wondered by your name if you were as well. We have one of the most qualified Surgeons in the world right here. Dr Gaudiani has performed more than 11,000 open heart procedures and he was the only one who knew exactly how to cure my 2 conditions Afib and Pericardtitis. I talk with all the big boys including Dr SHabitai, Dr Spodick & the Mayo group, they all knew of Gaudiani and even Dr Natale the Afib Guru previously of the Cleveland Clinic. I even talked with Dr Cox who was the inovator of the famous Cox Maze procrdure and he told me there is nobody better.

 Gaudiani saved my life, 8 months I was ready to live in a wheel chair and had slept in a chair for 16 months, I now am Med free 110/70 blood pressure & I thank God everyday for my success.

 I have plenty of time if anyone would like to email or talk to me directly just how Sherwood took me under her wing. if you would like to email me directly you can click on the envelope on the left side of my post.

 Sherwood, You were right, the only thing I worry about now is my Golf swing.

 All of you still searching, don't give up, There are great Doctors with lots of talent who can get things done right.

                            Boog