Friday, January 13, 2012

Living without a pericardium, continued.

[This essay begins here]
♫ Happiness is Lubbock, Texas, in your review mirror ♫
My wife arrived in Lubbock, Texas, in November, bringing along my two sons, the youngest born in Florida without me in attendance. I had to tell her about the Surgeon General’s letter and try to assure her that everything would be okay; I felt fine and told her I had no doubt I would again pass the medical board. But would I?
The Air Force was about to spend several thousand dollars putting a guy through an advanced degree program who’d been sick with a debilitating disease and had his chest opened not once, but twice in an effort to combat it, only to find it cropping up again, albeit in less severe form. Why take a chance?

My wife remembers me shopping for Thanksgiving and coming home with Cornish Game Hens. It was our first Thanksgiving together as a family of four, and the last time we had Cornish Game Hens for our Thanksgiving dinner.

I managed to get a delay in reporting to Sheppard AFB so that my time there would coincide with Texas Tech’s Christmas Holiday break. I threw a few clothes in a suitcase, stuffed my school work in my briefcase, said goodbye to my anxious wife and little sons, jumped in my trusty VW, and headed to Wichita Falls, Texas, about 4 hours east of Lubbock through some of the flattest, driest,  most boring country in America. Nothing to occupy my attention, but my future.
Sheppard AFB Hospital

&&&&&
I returned to Lubbock a few days before Christmas feeling pretty good about my experience at USAF Sheppard Hospital. My tests had been normal, my consultations with the medical staff had gone well; they seemed well-informed and friendly. But I’d have to wait for their decision.
I went shopping for presents, a Christmas tree, and the makings of Christmas dinner. I came home with what turned out to be a stewing hen for the main course. It was our first Christmas together as a family of four, and the last time for many years that I was assigned holiday meal shopping responsibilities.
I returned to class after the holiday and tried to concentrate on passing Statistics. In January, one year after my pericardiectomy, I received the Sheppard Medical Board’s report, dated December 28, 1966.

Although the patient has had one episode of “pericarditis” [in quotes because this episode was thought to be an artifact of the surgery] since surgery two years ago (in comparison with nine episodes...prior to pericardiectomy), his prognosis appears to be excellent. It is possible that he will have recurrent episodes; however, the paucity of attacks since the pericardiectomy appears to be an excellent prognostic sign. He has absolutely no evidence of reduction of cardiovascular function and is totally asymptomatic in the interval between attacks and at the present time. The patient can go worldwide.
I spent another 15 years in the Air Force retiring in 1981 as a lieutenant colonel. The Air Force sent me back to graduate school again during that time and I earned a PhD. The board’s finding that, “It is possible that he will have recurrent episodes.” was prescient. I’ve had mild bouts of pericardial pain on and off all my life. None have been so severe as to require hospitalization or even extended bed-rest. None have required ACTH (steroid) therapy. Pain has been controlled by nonsteroidal anti-inflammatory drugs (NSAIDs).

For many years I was unable to sleep on my right side -- the side of my original thoracotomy -- because I felt my heart beating. I think this was psychological. I always checked in with a cardiologist wherever I was assigned. And I got a waiver to the flu shot required by the Air Force, because there was a worry that I might get a repeat of whatever caused the inflammation of my pericardial tissue. I don't worry about that anymore; I worry more about getting the flu.

I wouldn’t recommend anyone without a pericardium playing football (although I did play touch football during my assignment to the Pentagon in 1968). Certainly a person without a pericardium is more vulnerable to cardiac injury, say as the result of an automobile accident, but beyond that, people without a pericardium can, and do, live a relatively normal life.

I went for 11.5 minutes on my stress test last year. That's 1.6 minutes less than I did in 1966 when I was 28 years old. My EKGs are normal. My blood pressure is usually about 114/76.
Prepped for for a heart monitor. Right scar was the window, left scar was the pericardiectomy.
Today, whatever pericardial pain I may experience is masked (confused with?) by the more banal discomforts associated with aging; arthritis, osteoporosis, gastritis, and who knows what. I’m 73 years-old. I’ve lived longer than the surgeon who did my pericardiectomy (he died at 71). I’m grateful for these old-age associated aches and pains. I know what the alternative was.

The one thing I'd change if I could is how self-absorbed I was when I was going through the worst phases of the disease, the operation, and the medical board. It was a very difficult time for my wife and I didn't spend enough time with her talking through things and listening to her concerns. It's a testament to her courage, loyalty, and love that she not only stuck with me, but supported me all along the way.

What's it like living without a pericardium? Great! That's the whole point. Before I had this life- threatening experience, I was a moody fellow who wanted to get out of the Air Force as soon as my 4-year obligation was up and write poetry about love and death. Being face-to-face with death changed that. I realized I wanted to live, and I realized that life was a gift. As strange as it seems, having pericarditis and all that went with it, made me a much happier person.

The End (?)

66 comments:

Idgie said...

Hi there. I wanted to pass on a thank you for taking the time to share your story. Today, on a study break from studying for the impending MCAT, I googled, "living without a pericardium". I had a total pericardiectomy four years ago at Mayo Clinic at the age of 19. While the experience of having pericarditis and surgery was not exactly pleasant, I too, found that it changed my life for the better. I still have pain occasionally and remain bothered by the sensation of the ever-beating of my heart when I lie down, however, the pain and the rhythm in my chest are a good reminder of my family and my strength. I know that you too have suffered , but thank you for sharing your experience in a positive way. It was an encouragement to me. Very best.

Richard Badalamente said...

Glad you found the telling of my experience with chronic pericarditis interesting/helpful, Idgie. Clearly, you have overcome the disease and pursued life to the fullest.

Whoops, my cat just jumped in my lap and is demanding attention in very bothersome ways.

All the best,

R

dbmoore said...

Thanks for putting your experience into words, very interesting and also very familiar. I am glad that you had such a positive outcome. I had my pericardium removed a year and a half ago and always considered it a 50/50 deal, the surgeon would do his part and I would do mine after the op. At the age of 44 I now run 5 miles most days and am fitter than when I was 25. The whole episode has changed my life for the better and given me a gift and strength that would have been unthinkable before. Good luck to you and everyone else that takes the trip.

Richard Badalamente said...

Thanks for sharing this, DB Moore.

Thinkabout said...

I want to thank you for sharing your story, I have been having pain in my heart for almost a year and just this past week my sixth cardiologist said he believes I have constrictive pericarditis. Though the surgery sounds terrible I am looking forward to the life without daily pain and worry about my heart.

Richard Badalamente said...

Thinkabout;

I recently met an 81 year-old man who had just undergone a total pericardiectomy for constrictive pericarditis. He tolerated the surgery well and was doing okay in the rehab.

Before you proceed with surgery, confirm the diagnosis through a Doppler echocardiography, and/or a high-resolution computed tomography (CT), or a magnetic resonance imaging (MRI).

Good luck!

R

Anonymous said...

Thank you for your post! I had "emergency" pericardium window surgery in Mar of 2011 after being at the hospital for 3 visits in 2 weeks being misdiagnosed until I almost died...today I'm still not right...and reading your story is leading me to believe I may be in for a long haul too...inflammation is running rampant in my body and nobody seems to know why...now I'm wondering if it's this heart of mine causing it and oh yeah, like you said, I'm getting pain in my back left side of middle of back...going to tell electrical impulse Dr I'm seeing what I've learned from you, cause on top of things from this surgery, I'm having AFibs (which started before my surgery and have continued afterwards) that have just kept me worn out and feeling like an old lady...51 shouldn't feel like a nursing home status but it has...my quality of life has sucked since my surgery and all I get from Drs is you have to exercise and watch what you eat...eating well I've done but exercising how can I when I start having wild palpitations and shortness of breath upon moderate exercise and last years stress test put me in hospital 4 days afterwards...so frustrated with the medical field that we have so much knowledge and equipment and still are diagnosing as if we're in the dark ages...shame on America! I keep researching and pushing Drs until I get results or at least a definitive diagnosis not "we did what we could and it'll be years before you have to have surgery to remove the rest of the pericardium" really? You have opened my eyes to not subcome to this end...

Richard Badalamente said...

"Feeling like an old lady"
I'm sorry to hear about your health problems. It has to be more than distressing for you.

I hope you can get your health care provider to give you a full workup. You may indeed have chronic pericarditis, but you may have other complications, as well. It's imperative that a complete diagnostic workup be done before surgery to remove the pericardium.

Good luck!

Unknown said...

Thank you, Richard, for the informative post. My husband had a pericardiectomy July 28 and your story (with the great educational content) is very helpful.
Best Regards,
Susan

Richard Badalamente said...

Thanks for the feedback, Susan. How is your husband doing after his surgery (I hope well)?

Unknown said...

My husband is doing well, Richard. The cause of his constrictive pericarditis is still considered idiopathic, so we're holding our breath. But he's feeling well and his lungs have stopped filling. Now our task is to fatten him up a bit!

Again, thank you.

Richard Badalamente said...

Sometimes excess fluid develops in the space between the pericardial layers and causes a pericardial effusion (buildup of excess fluid around the heart), not in the lungs. After removal of the pericardium, this won't be a problem (naturally).

Unknown said...

Yes, he had a pericardial window procedure in March because of the fluid in the pericardium. But he also has had bilateral pleural effusions that were tapped so ofter that they finally implanted a catheter so he could drain one of the lungs himself. He had miserable ascites, too. All this following a prostatectomy last September.

He was seen by a cardiologist, oncologist, rheumatologist, hepatologist, pulmonologist, vascular specialist...this went on for months until the constrictive pericarditis became evident. Quite a ride!

Richard Badalamente said...

Your husband has been through hell. Hard on you, too. My best wishes for a turn around in health and well-being for you both.

Mirabel said...

Hi Richard. My boyfriend went through a pericardiectomy and it's been tough on him. He can no longer do the things he loves doing easily like playing football or doing strenuous work. I want to help him as best as I can but I don't know what to do to help. He still feels pain and some other difficulties every now and then but I've been able to take comfort in your experience. But I need some advice as to what to do.
May God bless and keep you and your family in good health.

Richard Badalamente said...

Mirabel;

It's very sweet of you to want to help your boyfriend cope with the aftermath of his pericardiectomy. I'm sure that knowing you care is, in itself, a comfort to him.

Of course, challenge of dealing with his post-pericardiectomy situation is his to tackle. And the first step for him to take is to recognize that he has come through a difficult time and a risky operation alive. One can't continue to live with constrictive pericarditis and dying with it is an extremely unpleasent affair. Rejoice in being alive!

The most important factor in regaining one's health is not medicine, doctors, or medical care in general. It's psychological. Perhaps the importance of a positive attitude has been repeated so often it's become a cliche; nevertheless it's true.

One of things you can do, Mirabel, is to be a sounding board for your friend. Let him talk through his feelings and fears. As you do this, start encouraging him to set goals and develop a plan for meeting them. Walking to the mailbox comes before running a down and out. If expectations are realistic and work towards meeting them is steady, everything changes for the better.

It's important to for your friend to substitute activities he can do for those he no longer feels capable of. Always have something planned, even if it's sitting on the deck watching the sunset. Try to develop a joy in reading. Have a book at your bedside; something to look forward to before you turn out the light. Work gradually towards more strenuous activities, be patient. One of the whe worst things you can do is overdo, and end up with chest pain, and get discouraged.

As far as chest pain goes, you'll have it. You'll likely have "flare ups" now and then. Remember, your pericarditis was viral. Some people get a cold, you get inflammation and "chest pain."

Be sure you're seeing a cardiologist regularly, having a work up, inc. blood work, and just generally monitoring your health.

When you have pain, treat it with anti-inflammatory drugs -- non-sterodial anti-inflammatory drugs (NSAIDs): Ibuprofen, Advil, aspirin, etc.

One of the keys working at getting better is knowing what the source of your pain is, so that you don't stress out over the prospect that you're having a heart attack. After an operation like you've had, the trauma your body has taken can result in things like costochronditis, an inflammation of the cartilage that connects a rib to the breastbone. It can be scary. Take drugs! Again, NSADs will control this. But see your cardiologist to ensure it's not something else.

I recommend keeping a daily diary. It will help with tracking meds you may be taking, and physical therapy in which you may be involved, like cardiac rehab.; also sleep patterns, diet, and exercise. You don't want to get OCD, but remember, you are your own best healthcare provider.

When you feel able, get out and find ways to help others. Amazing how seeing what others are going through helps to put our own problems in perspective.

Good luck and God bless.

R

Lauren Claire said...

Hi Richard,

Thanks so much for your post it's so great to read such a positive experience. I'm 25 and had my pericardium removed 5 weeks ago. I too struggle with lying on my side as I can hear my heart beating (although like you said maybe its psychological). Since my operation I've found it has really put things in perspective for me, being a young woman prior to surgery I was so worried about having a big scar down my chest now I'm not bothered at all.

I see my surgeon next week for my six week check up, Like you they don't know what caused my pericarditis, but they were going to test the removed pericardium and try and find out.

One question, how long did you have the chest pain for after your operation? In myself I feel great but I am still struggling to sleep due to the discomfort. During the day I feel great as I'm moving around but I'm finding the nights difficult.

Anyway, Thanks Again for your post,

Lauren

Richard Badalamente said...

Lauren;
Honestly, I don't remember how long I had pain after the operation. You'll have two kinds of pain: one from the incision and associated trauma to ribs, etc., and another from residual pericardial tissue around major arteries that may continue to inflame from what is likely some kind of viral infection. The former should be better by now and should be gone in another few weeks. The latter will likely recur on and off for many years, but it is comparatively mild and controllable with NSAIDs, like Ibuprofen.

You can also try a heating pad and a cold pad,alternately. Hold to the incision area with a small pillow.

Getting sleep is essential and you should talk to your doctor about an effective pain medication, and something to help you sleep, like zolpidem (generic Ambiem). Some pain meds can cause constipation, so be sure to drink plenty of fluids and eat a diet high in fruit, veggies, and fiber.

As you are able, increase your physical activity -- walking is great. Regular exercise will promote well-being and help you to sleep.

You sound like a positive person. That attitude will serve you well in getting through this. I had my pericardiectomy when I was 27. I'm 76 now, and have all the common problems associated with aging. But I don't have constrictive pericarditis, constant chest pain, trouble breathing, or fear of dropping dead of heart failure. I feel blessed!

Best,

Richard

karen said...

A friend sent me this story before we made the awful decision to have our daughter go through a complete (as much as possible) pericardiectomy. Thank you for sharing the story, your story along with others really helped us in making our decision. She had her surgery in June of this year and is doing incredible. She suffered with pericarditis for 5 years and was only 12 when she got it. This surgery has been the best decision we all have made. It was a rough surgery and recovery but now she is a healthy happy teen who doesn't have to take tons of medicine, She had problems after surgery about worrying about hearing her heartbeat so loud, thankfully there was a facebook support page and they helped her a lot. Thank you again. Take care.

courtenay wells said...

hello richard, my name is courtenay wells, i am a 26 male from england, living in australia, i have been battling constrictive pericarditis for 1 year now and reading your story, i have to say reduced me to tears, the last time i cried, i think i was 13.

i also suffer from chronic pericarditis, and i am 6 weeks into recovery after my pericardial window, and things aren't looking too good, the constriction is still present, I'm short of breath and among other things, I'm really starting to struggle mentally, i cannot see any light at the end of the tunnel for me and i really would love to talk to you if that would be possible? possibly in a call, Skype, video call? whatever would be possible. I'm just asking if you could give me some guidance.

my details

email: slaterx10@gmail.com

thankyou so much for sharing your story, and i hope to hear from you soon.

Evelyn and Bill Snyder said...
This comment has been removed by the author.
Evelyn and Bill Snyder said...

Hi Richard:
Thanks for opening up about a very rare disease! I'm currently researching the whole internet about constrictive pericarditis and was glad to find this blog. I'm a 51 year old female who had two open heart surgeries between 2011 and 2013. The last one was the worst. I developed severe shortness of breath and dry cough afterwards. After excluding that my lungs are the culprit of these ongoing symptoms I went to Mayo for a second opinion. They mentioned I might have constrictive pericarditis as a result of progressive hardening of the heart sac as a post operative complication. Will be tested next week to confirm, but the doc already mentioned pericardiectomy. I'm pretty scared that my third Open Heart surgery might lead to more/other complications. I have never been the same. That's why I find your blog so encouraging. Thanks for sharing your story!

Richard Badalamente said...

Hi, Evelyn;
It's been a tough time for you. I hope things get better. You might be comforted to know that a pericardiectomy does not involve "open heart" surgery. In other words, it's not not like a by-pass operation. The Cleveland Clinic describes a pericardiectomy thus: "Pericardiectomy is performed through a median sternotomy, an incision through the breastbone (sternum) in the middle front part of the ribs that allows the surgeon to reach the heart. The surgeon will remove the pericardium from the heart, wire the breastbone and ribs back together and close the incision with stitches. Other surgeons may use a thoracotomy approach." Let me know what you find out about "hardening of the heart sac as a post operative complication." I'd like to include your findings on this blog.
Stay strong!
Richard

Evelyn and Bill Snyder said...

Thanks Richard. Will keep you posted.

Paul B. said...

Hi Richard-
One more voice chiming in to say thanks for writing about your experience. I had a total pericardiectomy 3 weeks ago after being diagnosed with idiopathic constrictive pericarditis.
I'm a little worried about the length of time that I can expect to be in pain. My surgeon says to expect at least a year of noticeable pain, and that doesn't sound too fun. Sleeping horizontally is impossible and any tips you or previous commenters can share about getting comfortable sleep in a recliner would be appreciated.
Anyway, enough babbling by me. Thanks again for documenting your experiences with this rare and often overlooked disease. Your success gives us "newbies" some hope and needed encouragement after having such a major surgery.

Sincerely-
Paul

Richard Badalamente said...

Paul;
"Noticeable pain" is very subjective. You'll have pain from the surgical procedure, which will usually subside over the space of 6 to 8 weeks. But there will probably be pain on and off for longer than that due to all the trauma of the procedure, e.g, rib spreading. You'll be able to live with that, and I emphasize "live." You may also experience occasional episodes of pericarditis-like pain as a result of residual pericardial tissue around arteries. The pain will be much less than full-blown pericarditis. You'll be able to control it with NSAIDs, like Ibuprofen. It will become less and less frequent. As for sleeping, that's a 'whole nother ball game,' as they say. You have to find what works best for you. I slept on my back propped up on two pillows for a while. Then was able to sleep only on my right side, because when I slept on my left side the beating of my heart was too noticeable and I kept waiting for it to clench and stop -- psychological stuff. It took me quite a while -- a few years -- to get over that. But I did, and everything else associated with the problem, too. You will overcome the pain sooner than you think, because you'll learn how to control it and "relax into the pain." (see http://www.psychologytoday.com/blog/turning-straw-gold/201110/5-techniques-help-physical-pain). You will get beyond this, Paul. Please keep me posted on how you're doing.
Richard

Evelyn and Bill Snyder said...

Hi Richard:
Had an echocardiogram (ultrasound of the heart) done at Mayo, and it turns out that the pericardium is not the problem but a mitral valve prosthesis dysfunction, which would have to be fixed surgically in the near future. We all know it's problematic because of the scar tissue from preceding two heart surgeries in 2011 and 2013. So at this point all we do is gather as much information as possible before we head into what I call "the final round" in the New Year, which will be my 3rd Open Heart Surgery.

Richard Badalamente said...

Evelyn;

Were your 2011 and 2013 open heart surgeries for repair of the mitral valve and re-repair of the mitral valve prothesis?

I'm so sorry you're having to go through this.

Richard

Evelyn and Bill Snyder said...

2011 a aortic aneurysm was discovered and fixed in an emergency Open Heart surgery which also lead to the replacement of my aortic valve. Post operative echocardiogram revealed a hole in my heart, which lead to 2013 open heart surgery. 2013 Open heart surgery became a real problem because I insisted to replace my aortic mechanical valve with a tissue valve while fixing the hole in my heart. During that procedure my mitral valve was hurt and thus I ended up with two tissue valve prosthesis. Now that the mitral valve prosthesis is malfunctioning, the question comes up how long until the aortic valve shows signs of disintegration? Probably both tissue valves need to be replaced by mechanical valves because they cannot open me a 4th time.It was clearly my mistake to demand a tissue valve in 2013. Now we have to go with mechanical valves anyway. I could have spared myself a lot of misery by taking more time to investigate the matter before going into surgery. This is what I advise anybody to do before a life-threatening surgery: Get your ducks in a row. Find out everything about your condition. Then make a decision.

Gerhard and Suyapa said...

I have just been diagnosed with constrictive pericarditis and have been told that the pericardium has to be removed. I am almost 75 and had been healthy until 2001 when I had miocarditis and in 2006 a heart attack. One stent. I have had atrial fib since 2011 and bp normal. In 2011 diagnosed with colon cáncer, full chemo, but I am doing well. After the chemo and during it I have been feeling tired and breathless with any physically effort. We just moved to Germany --3 months ago--and went to cardiologist. His findings were not good and I was sent to a hospital heart center for complete check up. Diagnosis after 3 days in hospital--CP. This was just on Friday. I have to have a conference with my cardiologist but I would like your advice as to what mind of hospital I Should look for for this surgery. I know that some have moré experience than others because this is a surgery that is not very comon. I am living close to Kiel in Germany. Your story has helped me a lot to understand my disease as well as the other blogs.

Richard Badalamente said...

Gerhard and Suyapa;

Let me start by saying that I am not an M.D. I write from personal experience, having suffered with chronic pericarditis and having undergone a pericardiectomy many years ago. Coincidently, my operation was performed in Germany, but at the USAF hospital in Wiesbaden.
My advice to you would be to discuss the question of where best to have your operation with your prior doctors; those who treated your myocarditis and atrial fibrillation. In my layman’s opinion, your prior medical history makes you a high risk patient for pericardiectomy. Thus, you are right to seek a specialist in the procedure. I would also explore other treatment modalities (e.g., prednisone, NSAIDs, a pericardial window).
Before you undergo the operation, I’d advise a complete workup to rule out any possible complications during surgery or post operatively.
Here are some possible leads on who you might talk with, but again, I am not familiar with Germany medicine, so these are just some links I came up with in a quick search on the Internet.
Good luck, and my best wishes for the successful resolution of your problem.
Department of  Internal Medicine and Cardiology  
Chairman: B. Maisch, M.D., Professor of Medicine  
Baldingerstr. 1  
35033 Marburg  
Germany 
Tel. +49 6421 286 6462  
Fax +49 6421 286 8954  
e-mail
Department of Surgery and Clinic for Cardiothoracic Surgery  
Chairman: R. Moosdorf, M.D., Professor of Medicine  
Baldingerstr. 1  
35033 Marburg  
Tel. +49 6421 286 6223  
Fax +49 6421 286 8952  
e-mail
German Heart Centre - Munich
Central switchboard
 Telephone: 
+49 (0) 89 1218-0
Office of Prof. Dr. Schunkert, Director of Department
Silke Stotzka
Telephone: 
+49 (0) 89 1218-4073
Fax: 
+49 (0) 89 1218-4013
stotzka@dhm.mhn.de

Richard

Aimee said...

Thank you for sharing your story, I have lived the last 17 years believing I was the only one with this kind of story but now I see I am in good company.

When I was 26 I had a sever Pericardial Infusion which resulted in them removing 600CC's of fluid from around my heart that along with being septic I was not given a great chance of survival. Being only 26 with a 3 month old, 1 year old and 4 year old at home I fought hard and made it home. Within a year it was determined that I would need to undergo a pericardiectomy which was performed in 2003 when I was 27. I was later diagnosed with lupus and that was determined to be the cause of my pericardium issues.

It has now been 13 years and aside from lupus flares I am generally in good health. I work out, bike, hike, water and snow ski, I don't let it hold me back. About once or twice a year I suffer from extreme chest pain similar to the pericarial infusion pain. I have been told it is anxiety, costochondritis, pleurisy... the list goes on and on. In the last year my Dr has sent me to the ER twice to rule out heart attack. After 9 hour work ups I'm sent home with a clean bill of health and some hefty medical bills to boot... but I'm still in pain. I know that the surgery did not remove 100% of the pericardium and I wonder if what is left gets enflamed and is what is causing these issues. I also wonder if parts the parts they couldn't get that had scared down to my heart cause issues by rubbing? I would really love to get answers to my pain one of these days but knowing it is not most likely life threatening helps a little.

Richard Badalamente said...

Aimee;

You certainly had a very rough go early in life, but seem to have bounced back pretty well -- I'm impressed with your level of activity.

I'd be interested to learn more about the "extreme pain" you experience once or twice a year. It must be pretty bad to take you to ER. Has myocarditis been ruled out? (http://www.mayoclinic.org/diseases-conditions/myocarditis/basics/definition/con-20027303)

Aimee said...

My previous rheumatologist never got to the bottom of the pain, she just knew it was lupus related and gave me prednisone and that always worked for me. For the last year I've been with Kaiser and have new Dr's who don't understand lupus as my previous Dr does and when I go in with chest pain they have have me head strait to the ER to be tested to rule out any heart issues. With the last 2 ER visits I believe any heart related matter has been ruled out, but we haven't found the cause of the pain.

I am currently having the pain (it started Monday and by Wednesday it was strong enough to require Percocet) but I'm not wanting to go in as I don't want to be routed to the ER again and really not wanting another round of Prednisone. At this point my chest hurts at all times, not to the touch and there are no tender points which rules out costochondritis. The pain goes up and over my left shoulder and into to my left shoulder blade and up into my lower neck givnig me a choking sensation. The pain gets worse with deep breaths and when sitting or laying down. I'm most comfortable standing or leaning forward which leads me to think it could be pleurisy (which I've had plenty of times). I can't get over the fact that the pain is what I felt 14 years ago when I had the Pericadial Effusion and I just wonder if it is in fact enflamed pericadial tissue and not pleural tissue. My Dr's don't go with that theory as they 1. have never dealt with a patient with a pericardiecomy and really know nothing about it and 2. don't understand that there is still pericardial tissue there. The surgeon who performed the surgery told me that he was not able to get most of the pericardium off of the back of my heart and that it "could happen again in the future". I don't know that we will ever know the root cause of this pain as long as the prednisone keeps working to clear it up.

Richard Badalamente said...

Dear Aimee;

I'm truly sorry to hear of your suffering, not just the pain -- bad enough -- but the uncertainty as to cause and possible consequences. That's very distressing. I know from experience.

Before I go on, let me reiterate that I'm not a medical doctor. Thus, what I tell you is based on my experience and the research I did when I was going through my "troubles."

I understand your reluctance to go to ER again, but you need to ensure that what's going on now is not life threatening -- a pleural effusion could become such and needs to be treated. Make an appointment with your regular doctor. Have him refer you to a cardiac specialist.

You're correct in suggesting that your pain is a result of residual pericardial tissue becoming inflamed -- whatever the cause. If this is the case, treating the condition with non-steroidal anti-inflammatories drugs (NSAIDs), such as ibuprofen, naproxen, diclofenac, and, of course, aspirin, should reduce and ultimately eliminate the inflammation, and the pain. Prednisone will also reduce the inflammation, but it is a corticosteroid and it has unwanted side effects (http://www.nhs.uk/Conditions/Corticosteroid-%28drugs%29/Pages/Sideeffects.aspx).

You could have both an inflammation of pericardial tissue and a pleural effusion resulting from the inflammation. You'd have to treat both in this case. If the effusion is bad enough, you might require needle aspiration (thoracentesis) -- basically inserting a needle into the space between the lung and chest wall (the pleura) where radiology shows the effusion to be located and withdrawing the fluid.

You need to get your doctor to do a work up on you to determine if your symptoms reflect anything life threatening, and to determine the proper course of action. This should entail blood work (often there are markers of inflammation), X-ray, EKG, and possibly an echocardiogram. If a thoracentesis is done, the fluid withdrawn can provide clues as to cause of your problem.

If you are "just" having another pericardial attack, you can treat it as before, with rest and NSAIDs, and possibly colchicine (new since I had my pericardial attacks).

The bottom line is get the bad problem fixed NOW, and work on the recurrent problem over time.

Please let me know how you're doing. All the best,

Richard



Aimee said...

Thanks Richard. I did go in for a work up, all was as before. Nothing really shows up except blood tests show inflammation and another round of prednisone was started and has helped. Pain is gone and now tapering the prednisone and crossing fingers that I can get off completely this time around.

Richard Badalamente said...

Good luck, Aimee

Anonymous said...

Richard thank you for sharing,
I am going on a year with pericaditis and have ha a few conversations with my Dr about Pericardiectomy surgery. I am very scared about my future.........you have made me feel a little better. So tired of the set backs but so afraid of surgery.

Richard Badalamente said...

Dear 'Afraid'

I certainly understand your feelings; living with pericarditis is tough, and contemplating having your heart 'peeled' is more than a little mind boggling.

Pericarditis can be treated without surgery, and the frequency and severity of your episodes may well decrease over time. On the other hand, if you've been dignosed with constrictive pericarditis (http://emedicine.medscape.com/article/157096-overview) and are experiencing the symptoms thereof, your doctors will advise surgery.es.

Let me know how it goes.

I wish you all the best,

Richard

courtenay wells said...

Hello aimme, I can somewhat relate to your story, I too have had a pericardectomy, due to constrictive pericarditis, I conferred with Richard durin the time coming up to operation as I was indeed scared, things really went bad for me after the operation, I had renal failure and double pleural effusions and my family was actually told that it was unlikely I would survive.. 6 weeks in intensive care and I managed to get through the renal failure and am out and working again... However things are not what they should be, I too had literally the same restriction and jvp elevation in my neck for 4 months after the op an it really felt like a waste of time, and I too wondered if the parts of the pericardium on the back of the heart which could not be reached was the problem, however doctors would always say it was not the problem, yet how can it be so if most of it has been removed... During the end of my stay in my hospital I was actually diagnosed with pulmonary hypertension, and cronic heart failure, I have been on a lot of medication since and none have seen to make any difference except one

courtenay wells said...

A drug called carvedilol, which is used to target Heart failure, although I still get the pains you described and they are irregular, the only thing I can really say that is really reducing these occurrences of pain is the amount of stress upon me at present, I have literally cut all stress out of my life , new job, relationship change, new house, these things changing have directly correlated with my improvement along with the new drug, I am curious if you experience a lot of stress ? It is a big cause for a lot of things and my constrictive pericarditis was also idiopathic, something I will probably never get to the bottom of...

Sara Brooks said...

Hello! I am a 29 yr old female who had a pericardial window done back in March of this year. Prior to this I suffered from Mono (which kept me literally in bed for 30 days) and pneumonia twice. (once during Mono in both lungs and then in February in my left lung)I was having several panic attacks and shortness of breath with unbearable pain. Drs kept telling me it was all of the "after affects" of having Mono so bad. I finally went to the ER and told the doctor that I am no leaving here until someone figures out what is going on with me. After several scans, blood work and 8 hrs later he says to me it is just a panic attack and was going to write me a prescription. I started to ball, I knew it wasn't just a panic attack. At that point the doctor said to me, would you mind if I did one more test. After that is where we found I had a pericardial effusion. From then on I ended up having the pericardial window done and thought it was all over. I keep having attacks and so my cardiologist put me on Colcrys and Prednisone 60mg (taper does) Any time we get down to 5mg of the prednisone, I have an attack or flare up. Pain is so unbearable in my chest, neck and down my left arm. Leaning forward is some relief, laying down felt as if I was drowning. We don't really know what caused the pericarditis, thinking probably viral. I am pretty healthy for the most part. No autoimmune disease, not diabetic or anything. Just high blood pressure. We tried to taper off the prednisone 4 times now, and each time it came back. He is no refering me to a surgeon to do a total pericadictomy. My surgeon now wants to make sure first no autoimmune disorder. I am going to see a Rhuematologist next week. I am petrified to have the surgery done but I also know it'll be worth it. I'm ready for a change because right now, I can't do too much physical activity, and if I do, I pay for it the next day. Any thoughts or other advice??

Thank you for your time!!
Best of Luck!!

Sara B

Richard Badalamente said...

Dear Sara;

I'm sorry for all you've gone through in dealing with your illness. Pericarditis is notoriously difficult to diagnose, although after your episode of mononucleosis, IMO it should have been considered.

I believe your doctor is correct in continuing to explore the possible cause of your illness. The Mayo Clinic web site lists the following possibilities:
Systemic inflammatory disorders. These may include lupus and rheumatoid arthritis.
Trauma. Injury to your heart or chest may occur as a result of a motor vehicle or other accident.
Other health disorders. These may include kidney failure, AIDS, tuberculosis and cancer.
Certain medications. Some medications can cause pericarditis, although this is unusual.

I agreed to my pericardiectomy because my pericarditis was constrictive. If that's the case, you have little choice. If it's not, you can undergo a complete workup to rule out the causes listed above, or identify the underlying problem, and continue with a less radical treatment.

Pericarditis is an inflammation of the sac surrounding the heart. The pain is caused by the rubbing of the sac as the heart beats. In fact, the "rub" heard with a stethoscope, is often the way the illness is diagnosed. Although it is painful and may feel like a heart attack, it isn't.

Lying down causes the pain to be worse and causes difficulty breathing. Elevate on a couple of pillows when you try to sleep. Avoid strenuous activity until your problem resolves.

Taking Non-steroidal anti-inflammatory drugs (NSAIDs), like Colcrys, Ibuprofen, aspirin, etc., reduces the inflammation and should reduce the pain (http://emedicine.medscape.com/article/156951-medication). Note that a full dose of the NSAID should be taken for an extended period of time.

Do you have someone around for support? You'll need this if you have surgery, as you'll be pretty helpless for a while.

Let me know what you find out, and how you're doing.

All the best to you,

Richard

courtenay wells said...

Hi Sarah and Richard, long time no speak... I just read what your going through and know the feelings and worries you'd have, what I will say is I can offer my experience of why I had a pericardectomy and the similarities between us, and you can take what you want from that as pericarditis is such a mysterious disease and when something like this affects you and changes your life you make It your priority to know everything about the condition, as I did..

I too had pericardial effusion of the heart and pleural effusion of the lung, and had all the medication, prednisone the same as you and it had no effect on the pericardial effusion. 1 year on and living this restricted life I had the window, it made no difference, another 6 months went of and still the shortness of breath and swollen feeling still remained, my condition was constrictive pericarditis and was told the only option was a pericardectomy, because I felt like I had no other option I had it, all appeared to go well and on the day I was sent home, my kidneys failed and my lungs began to fill with fluid, I was now in a life threatening condition and was not expected to live through renal failure with all the trauma along side with the pericardectomy, 5 weeks on and a battle through dialysis and constant lung drains, my kidneys started to work again, things were looking up, I was sent home.. Fluid retention in my legs was the next problem and this pointed to another serious problem called pulmonary hypertension, this was the worst thing in my eyes as there is no cure for it... After months of worrying and tests and medication trying to get my heart functioning properly again, I had literally given up, and I felt I was destined to be unhappy, I have accepted it, and slowly but surely, my strength began to return which was strange, at this point I felt like stress was a major cause of my problem, I quit my job and surrounded myself with good people, 6 months on I'm surfin every day and working as a roofer again, I still take medication for blood pressure and things like that but I still am unsure if the pericardectomy was the right decision, it is a very mysterious condition which doctors still don't know much about, I truly believe the problem needs to be sorted at the source , and cutting something out may not be the solution although it has worked in some cases, take from experience what is relevant to you and have a good think about it, the whole thing went of for 2 years and I feel like I've achieved something great, I too wish you do the same and I would like to here of your updates, no one should have to go through this. Good luck

Courtenay wells
27 year old male
Living in Australia.

Sara Brooks said...

Hello Richard & Courtenay!! Thank you both so much for all the advice. Here is a follow up from my last message:

I seen a Rhuematologist few weeks back and did a bunch of blood work and he ask me well over 100 questions and what not. I went back last week to go over all the results and everything came back normal. I know when I was first diagnosis with everything and was not taking any medications, they did blood work again for autoimmune disease and RA and that all came back normal as well, and that is when I just knew my pericarditis was caused by the mono and or pneumonia.

I go see my cardiologist next Wednesday I'm guessing to see what this next step is now. When he sent me to the surgeon few weeks back, the surgeon said he wanted more tests and what not done because he wasn't convinced I has pericarditis. Well, I'm pretty sure now he'll be convinced. I've read a bunch of stories online, throughout many blogs and also a group on facebook called Pericarditis. So far people who have had a pericardectomy done, are happy and are back to going about their "normal" lives again. Yes, there are few who have had problems afterwards. My doctor has told me to exercise and eat right and what not but its tough to do that because I have absolutely no energy, and constantly tired. Since being on prednisone, I'm constantly hungry and nothing seems to satisfy my hunger. Before I got sick I was a bit over weight, 179 lbs, once I got sick I dropped down to 138. Since being put on prednisone and other meds, I'm now at 163 lbs. I'm really self conscious about myself as it is and now that I can no longer fit into those "good looking jeans", I'm depressed. I can't stand the puffyness my face has. I also have alot of anxiety issues as well as panic attacks. I'm just ready to be normal again. I want to be able to play with my 3 young kids. Don't get me wrong, it could be much worse and I count my blessing every day... I'm tried of being tired really.

I read your stories and others as well, and I feel like there is hope.

Since I have had the pericardial window done, could that turn into constrictive pericarditis? I do get those heart palpitations, and shooting pains through my arm and now in the middle of my back. I'm terrified to be in that pain again.

I am really happy that you both are doing really well, and so sorry with what you've had to endure. Please keep me posted with everything as I will do the same!

Thank you so much, as I do know now, there is hope!

Sara Brooks
29yrs old female
Lubbock, TX

Sara Brooks said...

Hello Richard & Courtenay!! Thank you both so much for all the advice. Here is a follow up from my last message:

I seen a Rhuematologist few weeks back and did a bunch of blood work and he ask me well over 100 questions and what not. I went back last week to go over all the results and everything came back normal. I know when I was first diagnosis with everything and was not taking any medications, they did blood work again for autoimmune disease and RA and that all came back normal as well, and that is when I just knew my pericarditis was caused by the mono and or pneumonia.

I go see my cardiologist next Wednesday I'm guessing to see what this next step is now. When he sent me to the surgeon few weeks back, the surgeon said he wanted more tests and what not done because he wasn't convinced I has pericarditis. Well, I'm pretty sure now he'll be convinced. I've read a bunch of stories online, throughout many blogs and also a group on facebook called Pericarditis. So far people who have had a pericardectomy done, are happy and are back to going about their "normal" lives again. Yes, there are few who have had problems afterwards. My doctor has told me to exercise and eat right and what not but its tough to do that because I have absolutely no energy, and constantly tired. Since being on prednisone, I'm constantly hungry and nothing seems to satisfy my hunger. Before I got sick I was a bit over weight, 179 lbs, once I got sick I dropped down to 138. Since being put on prednisone and other meds, I'm now at 163 lbs. I'm really self conscious about myself as it is and now that I can no longer fit into those "good looking jeans", I'm depressed. I can't stand the puffyness my face has. I also have alot of anxiety issues as well as panic attacks. I'm just ready to be normal again. I want to be able to play with my 3 young kids. Don't get me wrong, it could be much worse and I count my blessing every day... I'm tried of being tired really.

I read your stories and others as well, and I feel like there is hope.

Since I have had the pericardial window done, could that turn into constrictive pericarditis? I do get those heart palpitations, and shooting pains through my arm and now in the middle of my back. I'm terrified to be in that pain again.

I am really happy that you both are doing really well, and so sorry with what you've had to endure. Please keep me posted with everything as I will do the same!

Thank you so much, as I do know now, there is hope!

Sara Brooks
29yrs old female
Lubbock, TX

Richard Badalamente said...

Sara;

It is very stressful to be in pain and not be certain of the cause, especially when it has to do with heart. You have been very diligent in researching your problem, going through the various diagnostic tests, and getting different medical opinions. That's exactly what you needed to do. If you decide to have surgery, you know you've done your 'homework' regarding your problem and treatment options.

One thing I'd suggest before your surgery is to go over with the Doctor what medications you are currently taking -- for all problems you may have, not just chest pain -- and make they want you on those meds right before surgery (for example, they won't want you on any thing that thins the blood, like aspirin). Also, make sure you are placed back on the meds you need after the surgery.

I know it's scary to get chest pain, but if the pain is a result of pericarditis, then it is not a 'heart attack.' The complication with pericarditis is the development of water in the lungs, which will cause you trouble breathing. Prednisone should prevent this. A chest X-ray would show if you have it.

Regarding the pericardial window, my understanding is that constriction can still occur even after a window. If you had a window done, then the pathologist should have examined a tissue sample and you should have been given the results of that exam -- i.e., was there thickening, was there evidence of scarring, was there evidence of a bacterial infection, etc.? I understand they diagnosed your problem as 'idiopathic' which is a fancy word for saying, 'don't know' what caused it, but what about what the pericardial piece looked liked? If there was evidence of scarring, then it's a pretty good bet the rest of the sac is scarred, and will probably continue to scar. So, removal seems called for. But this is something to discuss with your doctor.

I'll be pulling for you to get through this, Sara, and to enjoy a long, healthy, and happy life.

Richard

Sara Brooks said...

Hello Richard!

Here is a follow up:

I seen my Cardiologist this past monday. We are getting off the Colchicine completely because I can no longer tolerate it. We also agreed to taper down the prednisone again from 7.5mg down to 5mg.

My back back is still bothersome. I've tried to "look up" all the symptoms with pericarditis and taking all these meds. Is it considered an actual disease? I was told that I've got Recurrent Chronic Pericarditis... I don't understand the difference between that or acute?? It all sounds similar.

Right before you decided to have your pericardiectomy done, what was your last treatment plan?? I'm so curious because I'm at that point where I just want the darn thing out now!!

Sorry to keep asking you questions, you just sound so educated on this. :-)

Thank you for all your time!!

Happy Holidays!!!

Sara

Richard Badalamente said...

Hello, Sara;

I certainly understand the impatience you're feeling with regard to your health. You desperately want the problem solved and the pain and tiredness to go away.

To answer your question, "is pericarditis an actual disease?" Not exactly. Pericarditis is a symptom -- the inflammation of the pericardium. The “disease” is whatever’s causing the inflammation. It may be a virus, such as the many viruses that cause the common cold. It may be a bacterial, fungal, or other infection. In many cases, the cause is never determined. That was the case with my pericarditis.

Pericarditis can be acute or chronic. “Recurrent” pericarditis is another term for chronic pericarditis. "Acute" means that it occurs suddenly, usually doesn't last long, and doesn’t occur again. "Chronic" means that it keeps coming back -- it recurs, and it may take longer to treat.

I underwent pretty much the same treatment for pericarditis that you’re undergoing. I was given anti-inflammatory medications, and prednisone. Colchicine was not available at the time. I also had a “window” done. My window showed scarring of the pericardial tissue leading to a diagnoses of “constrictive” pericarditis.

Not all cases of recurrent pericarditis result in constrictive pericarditis (see http://circ.ahajournals.org/content/112/13/1921.full. You need to ask your doctor if you have constrictive pericarditis before you decide to have your pericardium removed. Pericardiectomy is major surgery and shouldn’t be undertaken lightly -- just ask Courtenay.

Pericarditis pain can be “radiated” -- transferred -- to the back. For me, it occurred under the left scapula, as well as in the chest. You could try a “pain patch” to help with your back pain. I use a Flector Patch (http://www.flectorpatch.com/). It is a self-adhesive patch that contains an anti-inflammatory called “diclofenac.” The advantage of the patch is that it treats the pain locally, and has less effect on your stomach.

So, see what more you can find out about the underlying disease causing your pericarditis and then decide whether a new regime of medications, or surgery is the answer.

I’m hoping that by next Christmas you will be over this very trying period and back to good health.

Richard

Sara Brooks said...

Hello again Richard!!

I hope you had a wonderful Christmas and new years.

I was reading your story again, do you still live in Lubbock, TX? I ask that because that is where I am currently living.

I go back to see my cardiologist in a few weeks and will defiantly ask about the Flector Patch.

I've been down on the prednisone from 7.5mg to 5mg now, and at first had some discomfort but it got better. I forgot to take my medicine a few days ago and by the night once I remembered I was having some sharp chest pains. This scares me because I don't know if I'll ever be able to get off the prednisone and I know I need to because it's taking it's toll on my body I've noticed.

The cause of my pericarditis is still ruled as "idiopathic". He has not said anything about it being constrictive. He did talk about it before with me but wasn't said that I had it, just said that mine was chronic.

Again, thank you so much for your time and advice, I really appreciate it!!

Sara B

Richard Badalamente said...

Hi, Sara;

It's good that your cardiologist said your pericarditis is not constrictive (he did say that, right?). That means the biopsy that was done on your pericardial tissue after your "window" didn't show any thickiening or scarring. Ask if there are any indications of constriction, that is, of the pericardium constricting your heart's function. Just to make sure you aren't in need of a near-term pericardiectomy. That way you can continue trying various non-surgical treatments to control occurrences.

No, I don't live in Lubbock anymore. I was there doing my PhD at Texas Tech. I also did an MS there at TT at an earlier time -- between Air Force assignments.

Good luck, Sara!

Richard

DebbieD said...

Thank you sooo much for this!! I have been suffering with refractory pericarditis for 2 ½ years now. I spent 4 months out of that time hospitalized. Mine is idiopathic. Prednisone eventually was used because effusions were even on the left side of my heart (very rare) and my lungs and stomach. However, having researched so much I have learned that once steroids are used, the chances of recurrence go up to 84% for the pericarditis becoming refractory. Each time my prednisone was lowered the pericarditis would come back so my doses would go back up and so on. It's been a looooong haul. It took nearly 2 years to get off of the steroids. I was able to control the last pericardial episode with very strong NSAIDs so for me that is progress. This whole thing has been exceptionally disheartening as I was always an elite athlete and even now as a mom I still competed at high levels in my sport (soccer). The steroids put 60lbs on me which I've lost 25 of so far. This last episode took 10 days on NSAIDs to get rid of. However I am pretty sure that I have much pericardial scarring that I hear rubbing very loudly every morning when I take my first few big breaths. It's been going on for about 8 months and has been getting progressively worse. I also hear it if I'm laying on the sofa or sitting quietly for a period of time - as soon as I get up and take those breaths I hear it. It feels vibrate-y and ticklish at the same time and I hear it. It is coming from the right side of my heart - like I feel it in the middle-ish area of my chest. Very disconcerting. On top of that I can no longer sleep in my left side as my heart beats like crazy like it's being squeezed or something. I have to sleep on my back or my right side. I think I am going to ask for a heart MRI or some sort of scan at my next appointment. At first it was barely discernible but now it's extremely loud and vibrating and tickling me. I feel like the right side of my pericardium is scarred and shrinks at sleep or rest and then gets stretched out when I wake and take my first few breaths. What worries me is no longer being able to lie on the left side. It feels like the scarring puts pressure or something on my heart from being on the top but if I lay on my right side, the scarring is on the bottom so the heart doesn't pound all over the place. I am thinking that a surgery of some kind to remove the scarred tissue might be in my future. The sounds that are in my chest in the morning are horrible. I think if I could get a cardiologist to be by my bed and hear it in the morning I'd be in surgery that afternoon. I'm so happy to have found your story and the story of others for encouragement. I've lost my job, my fitness and basically all travel is on hold as well - I'm a hostage at this point. I do give thanks I haven't been hospitalized in over 1 year though!!!! Once again, thank you so much for sharing your story!!!!!

Richard Badalamente said...

Thanks for sharing your story, Debbie. You have had a "long haul." I know how discouraging it is to suffer with this disease after having been athletically active. I admire your courage in fighting this.

You said your were suffering "refractory pericarditis." The medical term, "refractory" means resistant to treatment. Was the initially treatment NSAIDs? If so, what NSAIDs were used, and what was the dose? Was colchicine tried?

This is a link to one of the best descriptions of treatment options for pericarditis that I've run across: http://www.uptodate.com/contents/treatment-of-acute-pericarditis

Based on your description of symptoms, I think requesting further diagnostic measures is warranted, e.g., an echocardiogram might help identify thickening. A CT scan would provide more detail than a regular X-Ray. This rundown by Mayo Clinic covers this tests and others: http://www.mayoclinic.org/diseases-conditions/pericarditis/basics/tests-diagnosis/con-20035562

Hang in there! Let me know how things go.

Richard

Unknown said...

Hi there,
I'm a 39 year old male...I had a median sternototmy to remove my peracadium as it was constricting my heart. Things went well...had surgery at Johns Hopkns. My surgeon was world class...he stated it went perfect. It was performed on 28 of Dec. I have been on the mend and have retuned to work. Desk job...nothing strenuous. The reason I'm writing is that about a week ago I started to get sharp pains in various spots of my upper body...mainly lower ribs and upper ribs....it comes and goes but is sharp when I breath deeply. What's odd is that there is no rhyme or reason to the pain...it's becoming a source of anxiety as things have all gone according to plan thus far. I have done research and realize my ribs were spread open but why would they not have hurt before now. It feels weird to say the least...almost like a runners cramp that moves around from rib to rib. Any light you can share on why I may be having this would be appreciated. Thank you.

Matt in Balt. MD.

Richard Badalamente said...

Have you checked possibility of Costochondritis?
http://www.mayoclinic.org/diseases-conditions/costochondritis/basics/definition/con-20024454

Diane Haywood said...

Hi Richard...how grateful I am to connect with others who struggle with a "naked" heart. Getting a diagnosis in 2004 was almost impossible....Chronic Recurrent Constrictive Pericarditis was made by Dr.Joe Miller (now retired) Chief of CardioThorasic surgery at Emory Hospital in Atlanta, Ga. Recovery was lengthy. I was on oxygen for 2 years because the right diaphragm was paralyzed ( eventually corrected). 2007 the Aortic Valve had to be replaced with a pig valve. Another lengthy recovery.... I, too, have longed to hear from someone who has lived without a pericardium for years like you and I have done. Debilitating pain ( squeezing, burning crushing pain in my chest and straight through to the back) are my biggest issues. It is at its worst when I have had an active day, climb stairs, or walk some distance. Sleeping on my side is very difficult. The best way for me to get relief when I am in crisis is to lie flat on the floor with my feet elevated. I take tramodol for the pain and Celebrex for the inflammation. In recent weeks, it has been a real struggle. My cardiologist is excellent; however, this is a " gray" area and very little is known to try and help us. Thank you for listening. Have you ever gone to Cleveland Clinic for a consultation??...

Richard Badalamente said...

Hi, Diane;

Wow, you have had a 'struggle!" The complications you experienced are almost certainly a factor in the pain you're experiencing with activity. If you're experience is like mine, you can get pain even when you haven't been particularly active. I sometimes suspect that a virus that causes other people to get a cold, causes me to have a pericardial pain "flare up."

As I've written in an earlier post, I'm at an age now where it's difficult to distinguish lingering pericardial pain for arthritis or the ruptured disk in my back. I sometimes get a lingering, knife-like pain under my left scapula. This is probably due to spending too much time at the computer keyboard. I go to a licensed massage therapist for my general aches and pains, and take NSAIDs to control what I self-diagnosis as inflammatory caused pain. I mostly stay away from narcotic pain meds, like hydrocodone or tramadol. Incidentally, I read an NIH study that suggested a possible link between tramadol and pericarditis, but the evidence was very weak. (http://www.ncbi.nlm.nih.gov/pubmed/15771942)

When you’re experiencing severe pain that you’re unable to control using a regular OTC NSAID, you might try a combination hydrocodone+ibuprofen drug, such as Vicoprofen, as an alternative to tramadol. Don’t take a narcotic drug any longer than you absolutely have to.

Some NSAIDs are better than others in controlling pain from remaining pericardial tissue, or from the trauma your body experienced in your operative procedures. This article provides a very good review of NSAIDs and their efficacy. As the article states, “The solubilized potassium liquigel formulation of ibuprofen is available over-the-counter worldwide. Diclofenac sodium softgel has also been shown to provide a very rapid onset of analgesic activity and prolonged analgesic duration compared with conventional diclofenac potassium.” (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1855338/)

Celebrex (celecoxib) is a so-called COX-2 NSAID. It is a common prescription drug used to treat arthritis. My wife takes it and it helps her a lot. I can't take it. I'm allergic to the sufa base used in its formulation. As an NSAID, it should not be taken in combination with OTC NSAIDs, like Ibuprofen. You can take acetaminophen (e.g., Tylenol) for additional pain relief.

Work with your doctor to find the right combination of medications to control your pain. Also consider vitamin supplements, such as fish oil, glucosamine, chondrotin sulfate (see http://www.arthritis.org/living-with-arthritis/treatments/natural/supplements-herbs/guide/?_ga=1.142518647.474659612.1462074306).

Good luck, Diane.

Richard

Unknown said...

Hi Richard,

Your story & the way you have helped others suffering from pericarditis is inspirational. Thank you.

I'm a 46 yr old male, in good health, physically active, not overweight, never smoked who has recently been diagnosed with effusive constrictive pericarditis.

Mine started with a bout of flu 4 months ago & initially the cardiologist thought it was myocarditis along with a sizeable pleural effusion. It took 2 months to get an MRI which showed no damage to the heart muscle or enlargement of the heart but instead a circumferential effusion 8mm thick in my pericardium. At the time, I was relieved to hear it wasn't myocarditis so I didn't think to ask if the MRI showed any pericardial thickening or scarring. I've since been put on a course of NSAIDS & although I'm not in much pain my heart does feel constricted & I'm getting a lot of swelling in my legs. Any activity makes this worse & real exercise is impossible.

I'm really worried that the NSAIDs are too late & they've missed the opportunity to drain the effusion.
From all the research I've done, it seems that the only "cure" now is surgery.

Like you, I was in the Air Force (I was a fighter pilot for 10 years) so I've seen a lot of things & I'm pretty resilient. ...but I have to say, the prospect of a pericardiectomy utterly terrifies me.

For the first time in my life, I feel at a loss for what to do & I'd be so grateful for any advice you can give.

Thanks,

Doug

Richard Badalamente said...

Hi, Doug;

I'm sorry to hear that your suffering with pericarditis. This medical condition is tough for a lot of reasons, not the least of which is the uncertainty and with it, the sense of not being in control. At least when you're in the cockpit, even under combat conditions, and understanding the risks, I'm sure you felt in control.

So, here's the thing. It's far too soon in my view to be contemplating a pericardiectomy. In my experience, the first thing your doctor will do is ensure that you are in no immediate danger from the effects of pericarditis, the most common being the buildup of fluids in the pericardial sac, i.e., effluent. Treating with NSAIDS to reduce inflamation is a reasonable approach. That can be followed (or accompanied) by administration of prednisone. If that doesn't result in fluid drainage, a needle pericardiocentesis can be performed. This procedure is useful not only in draining the fluid, but to help identify the cause of the dissease itself (see http://patient.info/doctor/needle-pericardiocentesis).

There are other medicines that can be used to treat the pericarditis, such as cochicine (http://www.mayoclinic.org/drugs-supplements/colchicine-oral-route/description/drg-20067653). Here is a comprehensive and up-to-date rundown on pericarditis and its treatment: http://www.uptodate.com/contents/treatment-of-acute-pericarditis

I hope your doctor did blood work as part of the diagnosis. That blood work is also important as a baseline. It should be repeated periodically to ensure that medications you'll be taking aren't having deleterious side effects (kidney function is especially important to monitor).

The key to an effective treatment is an accurate diagnosis. Unfortunately, in my research, I find the most common cause of pericarditis to be, "non-specific, idiopathic," which in layman's terms, means to have no clue. If that turns out to be your diagnosis, then the COA is to treat the symptoms and hope to reduce the probability of recurrence. BTW, my pericardiectomy was necessary because I had multiple recurrences (I think 9) and that resulted in scarring. The scarring was identified as a result of a "pericardial window" preformed about a year before the total pericardiectomy (http://emedicine.medscape.com/article/1829679-overview).

Keep after your doctor (where are you, BTW?) to identify the cause of your pericarditis, and if it's idiopathic, his/her plan of action for treating it. Don't be shy about getting a 2nd opinion -- really!

In coping with the symptoms, sleep propped up (lying flat was problematic for me and is for most), when sitting, keep your feet elevated. Wear compression socks to help with the leg/ankle swelling (there are some great socks available now -- not like the ones your grandmother wore). Make sure you stay hydrated and regular. Lay off alcohol for now. Do what exercise you can, but don't push it. Read the books you've been meaning to read, but couldn't get around to (try Unbroken, by Laura Hillenbrand). And please keep in touch.

All the best, Doug,

Richard

DebbieD said...

Hi Richard. Thank you for your reply. I'm sorry to have taken so long to answer back but I lost the link. To answer your questions I was put on NSAIDs in the beginning which did nothing. I was put on stringer NSAIDs and colchicine which did nothing. They changed it to aspirin with colchicine which still did nothing. So prednisone was used as I was basically drowning. But like I said, once you use steroids, 84% chance of it being stubborn or resistant is the result. I had a hard time getting off the prednisone as it kept coming back. I was able to get the dose pretty low and got onto cortef and then I was finally able to get off that too. I have pretty well been on colchicine the whole time. After my last attack which put me in the hospital 1.5 years ago for 2 weeks, they put me on Imuran which is an immunosuppressant drug they give to kidney transplant patients. I take 150mg/day. The doctor has told me that my immune response (inflammation) must be suppressed for a few years as they don't want any more effusions as I am at the upper limit of allowable scarring. Imuran sucks your energy and makes you feel pukey but it is what it is. I was able to go away for 10 days this summer for the first time in 3 years as I felt confident with my stability. I feel odd palpitations from time to time like something is stuck and I get pains. I'll be discussing this at my next appointment. I know that over time scars get tighter and tighter.... this whole thing is crazy....

Richard Badalamente said...

Dear Debbie;

Clearly, your bout with pericarditis has been long and painful and debilitating. Your doctors have tried a number of treatments. You’ve researched your condition and the treatments for it. At this stage, you know more about the disease and its treatments than I do. For example, I never heard of treating pericarditis with an immunosuppressant drug to suppress inflammation. NSAIDs and colchicine are used for that purpose, as you know. And they don’t have the nastier side effects of Imuran.

You say your doctors tell you that you are at the “upper limit of allowable scarring.” How do they know how much scarring you have, and what’s considered “allowable?”

The only way my doctors knew how much scarring I had was by removing a “window” of the pericardium and examining it. That was done for diagnostic purposes, of course, but also in the hopes that I wouldn’t get more fluid build up in the pericardial sac. That didn't work, and now there are other diagnostic methods for this.

Cardiac computed tomography (CT) and cardiac magnetic resonance imaging (CMR) are increasingly being used in the diagnosis of pericarditis. They can be used to measure pericardial thickness, and the potential for constrictive pericarditis (CP). Pericardiectomy should be considered in patients with severe relapsing pericarditis and CP that has not responded to adequately to treatment. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2878263/

Are you being seen by a center of excellence in pericarditis, such as the Cleveland Clinic? http://my.clevelandclinic.org/services/heart/departments-centers/specialty-centers-and-clinics/pericardial Don't be hesitant to seek a second opinion.

Continue to be your own best advocate, keep exploring options, make a plan.

I wish you the best (don’t hesitate to write more).

Richard

DebbieD said...

Hi Sara. I was in your position exactly!!! Tried to taper off and the pericarditis would keep coming back - it was so bad I was constantly hospitalized. It's the immune response. Inflammation is an immune response and pericarditis is an inflammatory problem - the immune system flares up for no reason we can see. Our immune systems have been destroyed by vaccines, chemicals, a toxic food system, etc. The immune system is in dysfunction. But don't give up!!! It took me 2 full years to finally get off the steroids!!! I was down to splitting my pills in 4 to taper extremely slowly and then I went from prednisone onto cortef (more bio identical). But like you as I reduced, the inflammation returned. The trick is to reduce extremely slowly to give the body a chance to fight the inflammation in tiny increments. They also put me on Imuran which is an immunosuppressive drug (suppresses the immune system and so suppresses the immune response of inflammation). This has allowed me to avoid any more flares (it came back slightly last November and I was able to stop it using ONLY anti-inflammatories within 7 days - that was a huge victory for me). The problem with prednisone being given for pericarditis is it then makes the pericarditis refectory (stubborn) but it's a catch 22 as we have to stop it and there doesn't seem to be many alternatives to steroids for bad cases at the moment - doctors have no other solution. But before you resort to surgery, try reducing your doses by very tiny (2.5g) per every week or two - it took time but that worked for me. They put me on Imuran because I have just enough scarring that if I get more it will have to be removed. My doctors want to avoid surgery as best they can. I will be in Imuran for a total of 3 years and then taper off. The sides effects are fatigue but I prefer to be tired a few years than have heart surgery. I wish you all the best in this journey. It's a tough one!!

DebbieD said...

Hi Richard :)

Well unfortunately for me NSAIDs and colchicine were not working in any kind of combination. And when an effusion started on the left side of my heart (shown with ultrasound they did at my bedside as I was bawling in the hospital bed telling them it was different and way worse pain - I could barely breathe) that is when the cardiologist said enough and put me on prednisone - 60mg. Getting off was a nightmare as I've said. When I had a really bad flare (I was on cortef at that point and trying to taper) and spent the 2 weeks in the hospital was when they said Imuran was needed as nothing else was able to control the out of control inflammatory immune response. After the CT they did they do not want me to have any more severe flare ups if at all possible as they saw how much scarring I have (and apparently I can't get any more).

I'm actually Canadian. I live on the West Island of Montreal, Quebec. I am being treated at the CHUM (Centre Hospitalier de l'Université de Montréal). That's a good thing as it's a teaching hospital. I had to leave my local suburban hospital early on as I became too complicated for them.

This journey is now 3 years old. Taken a lot away from me including my job. Imuran makes you tired but I prefer to try this then have surgery. Surgery may well be in my future (for some reason I just have a gut feeling this is so) but I'm avoiding it for now. I have monthly blood tests and doctors appointments without fail. I also boost my immune system as best I can by eating only organic whole food, not consuming anything that comes in a box, best quality organic supplements I can find, drinking a lot of either filtered or spring water, no chemicals in my environment (I only clean with vinegar and baking soda), no chemicals on my body (I make and use my own body care products now), exercising consistently and sleeping at least 8 hours most nights. I don't think there's much else to do but wait out my time on Imuran and see what happens when I am tapered off. I still constantly read up on pericarditis all the time in case something new comes up with regards to treatment. We shall see.

To be continued......

Richard Badalamente said...

Debbie;

I admire your ability to take control of your health and do what you -- personally -- can do to improve your condition.

From what I can learn from your hospital's website, they do not have a specialization/center in Pericarditis Care. The Cleveland Clinic does. It's about a 9-hour drive from the West Island Montreal airport, and a flight of less than half that. This website has a number you can call for information, or to "live chat." http://my.clevelandclinic.org/services/heart/departments-centers/specialty-centers-and-clinics/pericardial/pericardial-disease

I'm not implying that you're not getting good care. I'm simply saying it never hurts to get a second opinion. I realize costs will be a concern.

Thanks for keeping me posted, and thanks for responding to other peoples' posts here.

Richard

DebbieD said...

That should say 2.5mg!!

Unknown said...

Thanks for your story. I had a total pericardiectomy in 1981 at age 8 after being shot in the heart with a pellet gun. I've never been much of an exerciser, or ever very fit, but I have EKGs done regularly and have always come away with "normal" reads. At 44, I do sometimes find myself wondering how much longer I have because of my procedure. Your story gives me hope that I can live just as long as any "normal" person out there....thank you.