Should I have a Pericardiectomy? - Chronic Constrictive Pericarditis

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Jacksmum
New Member


Date Joined Aug 2014
Total Posts : 3
   Posted 8/27/2014 2:00 PM (GMT -6)   
Hello - I'm new and very scared, I'm particularly interested to hear from anyone who has Chronic Constrictive Pericarditis and or has had this surgery above.

My story is... I am 41 and married with a 3 year old son, in the UK.

In March 2014 we conceived after trying for 2 years for another baby to complete our family, and we're completely overjoyed. However, 6 weeks into the pregnancy I was suffering from debilitating nausea and progressive breathlessness. When I spoke to my obstetrician and he said they were common complaints in pregnancy, then at a later scan free fluid was seen in my tummy which again was written off as normal. To cut a long story short, and 5 months into pregnancy, I was transferred from my local hospital to St Thomas's Hospital, London. Where by this time I had Ascites and fluid in my lungs and around my heart. The placenta had began to haemorrhage and blood supply to our unborn baby was effected and eventually I miscarried our beautiful baby boy. Initially they couldn't find the reason why I was so ill, and after an autopsy confirmed that the baby was healthy and the pregnancy was normal, they started to look at me. I have been tested for everything from Cancer and TB to Lupus, with all clear results. However, I'm now left with the diagnosis of Chronic Constrictive Pericarditis which they are thinking may have begun to develop back in 2006 when I had Pneumonia after losing my dad suddenly. I have now been discharged from hospital for a 6 week period to allow me to regain a normal level of fitness (after spending the past 7 weeks there) before returning to have a Pericardiectomy. I am yet to meet my surgeon to discuss this but from what I understand the operation is major open heart surgery and very risky and is only performed in extreme chronic cases, the operation itself has a 15% mortality rate, and in 50% of cases it is successful in reducing pain. This is where I am in a dilemma, I'm currently on a tapering dose of steriods and diuretics, and suffering from no pain! I am weak and fragile, but pretty much expected after 7 weeks in hospital.... but I don't feel that unwell that warrants this! The only visual symptom that reminds me of this nightmare I'm living through is my pulsating vein in my neck, which apparently is a classic sign of the stress my heart is going through. Reading other peoples stories with this condition they all seem to be in terrible pain, which I totally understand would then outweigh the risks of this surgery. But I have a 3yr old son and am not currently in pain! I can only think that it's advised to maximise my life expectancy? I'm wondering what would happen if I didn't go ahead with surgery? I realise that I need to speak directly to my surgeon about my concerns. But I'd really appreciate hearing from anyone who has Chronic Constrictive Pericarditis.

I apologise if my post and questions seem rather frantic... but with no knowledge on the facts that's how I feel right now.

RedBear
New Member


Date Joined Apr 2011
Total Posts : 8
   Posted 9/4/2014 11:54 AM (GMT -6)   
I developed constrictive pericarditis following earlier heart valve surgery. When I was 48 years old, I had a pericardiectomy at the Mayo Clinic. That was definitely the right decision for me.

As a pretty active guy, I noticed the symptoms of constrictive pericarditis early - a lot of pressure in my head whenever I bent over, tiring early during exercise, ascites, the pulsing jugular vein on my neck, and swollen ankles and hands. My doctor noticed that my blood test showed that certain liver enzymes were higher than they should be. about 6 months after my symptoms showed up, I had a correct diagnosis, which I understand is better than most. about 1.5 years after my first symptoms, I had a pericardiectomy at the Mayo Clinic.

For me, the decision was pretty easy. Even though I wasn't feeling pain, I didn't want to continue feeling sick the rest of my life, when there was a possible solution. Plus, I read that constrictive pericarditis is usually a progressive disease. Most likely, my health would continue to deteriorate. Plus, there have been studies that show that having the surgery relatively early rather than later results in better outcomes. This wasn't an easy decision because I had 3 young sons that I wanted to be alive for, but I also didn't want them to feel that they had a sick dad, and I wanted to be around for them a long time.

It's hard to say what would happen if you didn't have surgery now. You would likely continue to get worse, but nobody knows how fast. I have heard of cases where people had constrictive pericarditis for decades. On the other hand, it could get worse quickly. My cardiologist was beginning to notice bad changes in my heart echocardiogram that would likely be permanent. The condition was getting in the way of me carrying out my normal life activities. It became tougher to play with the kids or go for a run. Permanent damage was being done to my body - I wanted to take care of the situation as quickly as possible.

It appears that you've got a more slowly progressing case than I had. My cardiologist did tell me that I could wait longer, to see how things progressed, but after reading a lot of research articles on constrictive pericarditis, that did not seem to be the right approach for me. I wanted to feel better, and I wanted to maximize my life expectancy. Several studies have shown that early surgery produces better results.

The good news is that with constrictive pericarditis you have the potential for a total cure via surgery. You are right that the surgery itself is risky. However, the key there is to find a doctor that has performed a lot of these procedures, and has sufficient experience. When I met with my surgeon, he mentioned the 15% mortality rate nationwide, but he told me because he performed so many, because I was relatively young, and because I was in good shape otherwise, the mortality rate was much lower for me (I'm trying to remember... maybe just a couple percent). Constrictive pericarditis is a pretty rare condition - you want to find a surgeon at a major heart center that has had a lot of experience dealing with it. I traveled a good distance to find the best surgeon for this condition. Hopefully you've got that flexibility in the UK.

I hated having constrictive pericarditis. It made me feel miserable and depressed. But for me, pushing for an early resolution was the right thing to do - and I have been very happy with that decision. These days, I have no symptoms of constriction, I am active, and I am living a much better life than if I hadn't had the surgery.

Best of luck! It sounds like you've been through *very* trying times. If it were me, I wouldn't try to put off surgery beyond the period that the doctors recommend, and would want to get it done soon. This is a difficult, awful time in your life, but you can and will get through it.

Regards,
RedBear

Jacksmum
New Member


Date Joined Aug 2014
Total Posts : 3
   Posted 9/5/2014 3:45 PM (GMT -6)   
Dear Redbear,

Thank you so much for your really helpful and honest reply, it's filled me with optimism and much needed hope. It's interesting reading your story too, because you were a similar age with small children.

Also...Ive experienced the same symptoms as you mention, but not all at the same time, for example I currently have the head pressure thing, but my cardiologist didn't recognise it as being a symptom so I thought that it was maybe a side effect of the Steriods.

Can I ask, did they remove your pericardial sac? I've read that in extreme cases where they are unable to scrape away fluid because it hardned sometimes they remove the whole sac and leave the heart free-beating?

Also, was the incision down the middle of your chest (known as a zip scar) I've heard that they can also do open heart surgery with an incision across, just under the breast. I know this might sound a tad vain... but it's not that I mind the scar itself... it's just I don't want it to be visible like wearing a badge! Im thinking for me emotionally it will be a daily reminder of a very tragic time, also as I'm having to come to terms with the fact that they've told me it wouldn't be advisable for us to try again for another baby. it's a big blow for me.

Yes I've read a lot about the Mayo Clinic it sounds great. I'm being treated under NHS, which means it's less selective, however, I would have it done at St Thomas's, London Which is a top London teaching hospital with the latest equipment, and my Cardiologist is a Professor and my surgeon is top of his field. But it's a good question, so I will ask how many or how often he does this operation. Can you remember how many times or how often your surgeon had, just so I have a comparison?

Thanks again for taking the time to reply to me. It's very much appreciated.

Best wishes.

Jacksmum

RedBear
New Member


Date Joined Apr 2011
Total Posts : 8
   Posted 9/6/2014 1:50 PM (GMT -6)   
Cardiologists aren't knowledgeable about all aspects of constrictive pericarditis because it is so rare. My cardiologist didn't know about the head pressure thing either. She also didn't know about the research being done at Mayo and the Cleveland Clinic that argued for early surgical intervention. She in fact argued against a pericardiectomy because most of her experience was with patients that had constrictive pericarditis from radiation, and that tends to have the worst prognosis. (On the positive side - people that get a pericardiectomy because of constrictive pericarditis caused by a virus or bacteria tend to have good outcomes - that's you!) So I felt that I had to become my own specialist and advocate.

The surgeons removed almost my entire pericardium. There is some research that suggests this provides the best outcome, so in fact I chose the doctor and hospital that I did because they have been big advocates of "complete" pericardiectomies. Actually, I think that there may be a small amount of pericardium - maybe 10% - that is difficult to reach because it is on the back of the heart, but that rarely poses a problem. It turns out that the heart doesn't need a pericardium, but if enough pericardium is left, it can become fibrosis and constricting.

My doctor chose to do a median sternotomy (zip scar down the chest). For him, he felt that gave him the best access, but I know that other doctors prefer other methods. Since I already had a zip scar from earlier heart valve surgery, I didn't mind it. Plus, it fades to white over time. Initially the scar reminded me of a bad time, now, 3 years later, I just don't think about it.

I am surprised that the doctors recommended not having another child. A lot of people (fortunately myself included) make a full recovery following a pericardiectomy. The doctors told me that it took me a couple of years to get sick, and that after the surgery, it would take a couple of years for my body to recover... and it did take some time. And depending upon the severity, there may be some structural changes to the heart that never get 100% back to normal - perhaps that is the case with you. But if you are fortunate to recover back to your regular self, I can't imagine why they would tell you not to have another child. I wouldn't give up on this... I would speak to other doctors, and get specific rationales.

I'm trying to recall the exact numbers from Mayo... I may be off here, but I think that they do somewhere around 60 a year, and my surgeon did most of them - maybe 3 a month - but that's pretty unusual. I would make sure that your surgeon at St. Thomas's does enough, and has had good success, and perhaps ask if there is anybody that does more of them in London. I would also ask about a mortality estimate specifically for you, that takes into account that you are (1) young, (2) your etiology of constrictive pericarditis was viral or bacterial, (3) otherwise pretty healthy (I hope), (4) only partially symptomatic (you mention that you don't feel that unwell, and research shows that people in the early stages of the NYHA Heart Failure scale respond best to surgery). These are all positive things for you!

Best of luck. I know things seem dark now, but there is a good chance you can get back to normalcy, and this might become just an unpleasant memory.

Regards,
RedBear

Jacksmum
New Member


Date Joined Aug 2014
Total Posts : 3
   Posted 12/9/2014 4:26 PM (GMT -6)   
I'm such a novice to posting on forums! But I just wanted to let anyone who has read my original post know that I had my pericardiectomy operation on the 18th of November. My surgeon was successful in removing the whole of my pericardium without any complications and without me requiring a blood transfusion. My personal experience of the operation was quite straight forward, and although I got myself in such a state of nerves before my operation which resulted in me being terribly sick. The bits I do remember wasn't too bad and painkillers help you through. I recovered so quickly I was discharged from hospital 5 days later! I'm now at home and I guess the thing I would say is that I realise it's going to take some time to make an actual FULL recovery for me, mainly due to other factors such as ascities. But I'm here 'alive' and feeling much more positive about making a full recovery.

I really did need to dig deep to find the courage to have this op done and I'm very grateful to the people who contacted me via my post to chat and offer support, especially Redbear!

Best wishes to all who have, or need to find courage in their own situations x

McAlhany
New Member


Date Joined Feb 2015
Total Posts : 7
   Posted 3/25/2015 10:20 PM (GMT -6)   
Hello,

Just took my dad to the University of Chicago Medical Center for a complete pericardectomy done robotically. Dr. Balkhy performed the surgery and was able to remove all calcification - posterior, anterior and lateral. He said it was the worst case he had every done. My dad is 79 years old and was turned down by many other major medical centers due to high mortality rate. Anyway, the healing time and hospitalization is much faster with the robotic approach and a sternotomy is not required. Good luck to you in whatever you decide.

Helen in Atlanta

McAlhany
New Member


Date Joined Feb 2015
Total Posts : 7
   Posted 3/27/2015 8:21 PM (GMT -6)   
Well, with the robotic procedure, the cardiothoracic surgeon makes 4 or so tiny incisions in the space between the ribs. Microscopic instruments are used. The incisions heal very quickly. The surgery takes as long if not longer because it is very precise and the instruments are small. But, the healing process is much faster and risk of infection is significantly less. Hope this helps. Maybe you will be lucky and not need surgery!

KattOK
Regular Member


Date Joined Mar 2014
Total Posts : 23
   Posted 4/30/2015 2:19 PM (GMT -6)   
Hello,
I've been reading your posts. My 17 year old daughter had a complete pericardiectomy almost a year ago now. RedBear thank you for your post, the recovery period and what your doctor said makes sense. I was a little concerned. My daughter is doing incredible. She hasn't had to be on any medications since surgery, she has not had any issues and had a fantastic surgeon. He had been at the Mayo Clinic before coming to our area. I had been wondering about her being tired a lot, but again she was very very sick for 5 years from pericarditis and effusions.
I am glad to hear everyone's success stories! I can add that my daughter also has had a very successful surgery and recovery. She gets tired but my husband read that this takes some time to recover from and walking every day helps. Of course convincing a teenager to do that.... well that's another story. :)
Best wishes everyone. I must tell you that this forum was where I first heard from people who had actually had this surgery and the positive outcomes, it was truly helpful for our family.
KattOK

theHTreturns...
Elite Member


Date Joined Mar 2009
Total Posts : 20254
   Posted 5/1/2015 2:59 AM (GMT -6)   
positive stuff. many healing thoughts.
THE HAPPY TURTLE.

my conditions are mere aspects of me, they do not define me.
'

Bobbi_007
Regular Member


Date Joined Dec 2015
Total Posts : 41
   Posted 12/13/2015 1:19 PM (GMT -6)   
I was having the breathlessness only during exercise and pressure in head before the chest pain started. The chest pain happened then I became very ill...nausea, tired, chest pain worse when lying down, PVC's, etc. The nausea went away and I have 70% of my energy back. I thought the chest pain was getting better but it's become worse again. I don't know if this is chronic pericarditis or constructive. Back in sept, my ECG's did show slight ST elevation but now they are pretty much normal. I have had no clinical findings of pericarditis. No fluid, not pleuritic, echo normal, chest ct showed no effusion, heart chambers, etc were unremarkable, all blood work was/is normal...no inflammation, no rub detected, no signs of infection. Could this be restrictive? No swelling anywhere. Could this be chronic pericarditis? I don't even know what to ask my GP tmw :(

andrewwerdna
New Member


Date Joined Dec 2016
Total Posts : 2
   Posted 12/15/2016 11:10 PM (GMT -6)   
Hi RedBear... I made a profile to specifically talk to you. I was doing research because I still have a few odd feelings after my pericardiectomy. I am a 28 year old male from California. I too had Dr. Jae Oh take over my case and oddly enough had Dr. Schaff do the operation in Rochester. I would love to get an email address from you to talk a little bit more. Hope to hear from you soon and I figured out this forum correctly.
-Andrew





RedBear said...
Cardiologists aren't knowledgeable about all aspects of constrictive pericarditis because it is so rare. My cardiologist didn't know about the head pressure thing either. She also didn't know about the research being done at Mayo and the Cleveland Clinic that argued for early surgical intervention. She in fact argued against a pericardiectomy because most of her experience was with patients that had constrictive pericarditis from radiation, and that tends to have the worst prognosis. (On the positive side - people that get a pericardiectomy because of constrictive pericarditis caused by a virus or bacteria tend to have good outcomes - that's you!) So I felt that I had to become my own specialist and advocate.

The surgeons removed almost my entire pericardium. There is some research that suggests this provides the best outcome, so in fact I chose the doctor and hospital that I did because they have been big advocates of "complete" pericardiectomies. Actually, I think that there may be a small amount of pericardium - maybe 10% - that is difficult to reach because it is on the back of the heart, but that rarely poses a problem. It turns out that the heart doesn't need a pericardium, but if enough pericardium is left, it can become fibrosis and constricting.

My doctor chose to do a median sternotomy (zip scar down the chest). For him, he felt that gave him the best access, but I know that other doctors prefer other methods. Since I already had a zip scar from earlier heart valve surgery, I didn't mind it. Plus, it fades to white over time. Initially the scar reminded me of a bad time, now, 3 years later, I just don't think about it.

I am surprised that the doctors recommended not having another child. A lot of people (fortunately myself included) make a full recovery following a pericardiectomy. The doctors told me that it took me a couple of years to get sick, and that after the surgery, it would take a couple of years for my body to recover... and it did take some time. And depending upon the severity, there may be some structural changes to the heart that never get 100% back to normal - perhaps that is the case with you. But if you are fortunate to recover back to your regular self, I can't imagine why they would tell you not to have another child. I wouldn't give up on this... I would speak to other doctors, and get specific rationales.

I'm trying to recall the exact numbers from Mayo... I may be off here, but I think that they do somewhere around 60 a year, and my surgeon did most of them - maybe 3 a month - but that's pretty unusual. I would make sure that your surgeon at St. Thomas's does enough, and has had good success, and perhaps ask if there is anybody that does more of them in London. I would also ask about a mortality estimate specifically for you, that takes into account that you are (1) young, (2) your etiology of constrictive pericarditis was viral or bacterial, (3) otherwise pretty healthy (I hope), (4) only partially symptomatic (you mention that you don't feel that unwell, and research shows that people in the early stages of the NYHA Heart Failure scale respond best to surgery). These are all positive things for you!

Best of luck. I know things seem dark now, but there is a good chance you can get back to normalcy, and this might become just an unpleasant memory.

Regards,
RedBear

theHTreturns...
Elite Member


Date Joined Mar 2009
Total Posts : 20254
   Posted 12/15/2016 11:52 PM (GMT -6)   
have not seen redbear around. may read. but you can click on his name to see if an e-mail addy is avail.
THE HAPPY TURTLE.

A QUOTE FROM THE HAPPY TURTLE THAT REFLECTS ME.

"COMPLEXITY IS MY WAY OF EXPRESSING MY NEEDS IN A MANNER THAT IS NEITHER DESTRUCTIVE, NOR NEGATIVE"
'

andrewwerdna
New Member


Date Joined Dec 2016
Total Posts : 2
   Posted 12/16/2016 10:45 AM (GMT -6)   
Yeah, I tried to see if there was an email, but there isn't. If you have any additional tips on how to contact him it would be much appreciated. Thanks The Happy Turtle!


THE HAPPY TURTLE said...
have not seen redbear around. may read. but you can click on his name to see if an e-mail addy is avail.
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