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Pericarditis and Pericardiectomy Part 3

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Posted 3/22/2006 12:37 AM (GMT 0)
Hi - thought I'd try to start a new post for us since the last one is locked.
Posted 3/22/2006 10:21 PM (GMT 0)
Hi Christine:

     I'm glad you started this new thread.  It was getting hard reading all of the last ones.  I'm off and on this site.  I have CP and it is pretty much inoperatable because it occurred after a triple by-pass and there is a lot of scaring that makes a reopening without compromising the graphs almost impossible.  No one wants to risk it until it gets to the point where the benefits out weigh the risks.  One doctor said he would do it before but he's never done even a regular pericardectomy before.  Those that have say they won't risk it.  So I just keep plugging along until something new is discovered.  Good luck.

Les

Posted 3/23/2006 6:57 AM (GMT 0)

Hi everyone, it has been a while since I've posted.  I still come on every week or so and catch up with everyone...

So we are on a rollercoaster... My fiance has been doing so well... coming down off the prednisone.... he was on 5mg, then 2, then 1, then started to feel a little funny.  He said he felt pressure at the top of his breath, kind of like chlorine-breath, when you spend too much time underwater in the pool.  He was all tired and concerned, and understandable anxious.  He went to get a blood test and measure his sed-rate yesterday, and called in this morning  -  doctor said sed rate was 4, completely normal (though for my fiance, he's had it as low as 2 before).  Well he is out of town tonight, and called me crying.  He says he knows it is back (the pericarditis), and he can just feel it.  He says he tries so hard to be a good person, and he has the life he wants, and understandably, he is frustrated.  Doctor wants him to come in tomorrow for an echo... even though doctor thinks everything is OK given the sed-rate.... he wants to check him out to see why he is feeling this.

It is just a bummer, plain and simple.  I told fiance that life doesnt always come with a straight, linear path to the promised land... sometimes we have to face seemingly insurmountable challenges... I tried to reassure him that everything will be OK and this will find a resolution someway, somehow.  I think he is feeling over-emotional because it is his heart, and as they say, any trauma or illness around the heart can have psychological impacts.

Anyways, just wanted to share with you all.  You're in my thoughts often and I hope everyone is doing their best to be well.

Posted 3/23/2006 2:38 PM (GMT 0)

Maya,

many members of this forum experienced much the same events as your fiance. chest pain, breathing issues, acceptable sed rates, etc. My constrictive pericarditis (rather than the recurrent pericarditis) wasn't diagnosed until the second specialist at a teaching hostpital performed a cardiac MRI. That showed the pericardium adheredto the heart. The correct diagnosis doesn't make you better, of course, but it makes it much easier to decide what to do. For me that will be a pericardiectomy at the Mayo clinic in three weeks.

good luck to your finace - i hope he gets a firm diagnosis ...

christine

Posted 3/24/2006 9:05 PM (GMT 0)

Hi Maya, 

It's been about four months (!) since I last posted.  I'm so sorry to hear that you fiance is STILL struggling with this insideous disease. I remember how I felt when I had my first symptoms.  It was next to impossible to convey what was wrong, but I knew it had to be something.  The symptoms seemed to suggest it was anything but my heart.  Then, by the time the Mayo finally verified it WAS my heart, almost two years had passed. 

I know that your fiance had an early diagnosis and it must infuriate him when the doctors act like there's nothing they can do about it. Hopefully the sypmtoms will eventaully respond to the predisone.  It sometimes comes down to a waiting game, and that stinks!   I don't know if they'll perform a pericardiectomy to releive recurrent pericarditis, but it seems like that could resolve his problem.  Physicians are always reluctant to remove the pericardium because it is not considered a "routine" heart surgery.  But, as we all know, you can get by without one, and some people are even born without them. Is there some reason his doctors won't perform the surgery?  Underlying health condtions? Or, do they just think it'll go away?

It's been five months since my pericardiectomy at Cedar Sinai and I am off all meds.  I see a doctor about once every three months.  I, of course, put some weight back on now that my metabolism has returned to it's normal, sluggish self.  During my last doctor visit they told me to lose about ten pounds.  But, I'd rather have my clothes a little tight compared to when they were just hanging on me. In all other aspects of my health, I am completely back to normal.  I did have some weird heart palpatations for the first week or two of recovery, and I ended up getting a staph infection which required me to self administer IV anitibiotics for six weeks after release form the hospital.  But, my heart rate is normal and the infection is gone.  I've been declared healed.

I am so thankful that the operation was successful.  It has given me a whole new outlook on life!

Maya, I pray your fiance gets that same chance.  I'll be rooting for him!

Christine, I don't know you, but I wish you all the best.  The Mayo is a first class institution.  You will sail through the operation and be back on your feet in no time.  Insurance issues prevented me from having the Mayo perform my surgery (and I was extremely happy with the Cedar's staff), but the Mayo was the one to finally diagnose what was wrong with me (constrictive pericarditis).  Without them, I would still be struggling with that awful condition.   Keep in touch and let us know how your surgery goes.  We'll be thinking about you!

Scott

Posted 3/25/2006 10:27 AM (GMT 0)
christine,I'm glad you started a new thread as well. I am surprised there isnt more posts on the heart forum. I have congestive heart failure and there is nothing more the drs. can do for me other than a heart transplant, which i have decided not to have. I know I have posted about this before, and I appreciate the responses I got. But I was somewhat surprised that there werent more. I think by you opening up this new thread it will help alot more people with this disease.Good Luck to everyone that responded to this post. I wish you All the best, and hope to hear from you all soon.Take Care All and God Bless!
Posted 3/25/2006 1:30 PM (GMT 0)
Hi Maya,  I am so sorry that your fiance is having so many problems.  Please try to keep us updated.  You and he will be in my thoughts....take care

Posted 3/27/2006 9:07 PM (GMT 0)
Hey Guys!

I am back finally....

thanks JEN, and els, for your help on removing that one post,it surely helped...

 

MY MESSAGE TO ALL THE NEW PEOPLE>>>>DON'T GIVE UP::::::

I have went back and read some of the posts since I had not been on in a couple of weeks, and it breaks my heart to see anyone struggling with this disease, as I struggled with it for 12 years, and OH boy, can I relate!!!!!....and  I was the worst case CLEVELAND HEART CLINIC had ever seen...I had been to so many doctors in my area, and they had diagnosed me as having pericardial fat, mitral valve prolapse...its in my head..you name it...they diagnosed everything exvept what it really was........which was really the calcification and constriction, I heard so many funky diagnoses....the real problem is, IT IS RARE, and NORMAL cardiologists arent used to seeing it, and either dismiss it; or send you down the road.......I can't even count or remember the doctors I had seen, it was insanity.......

I had ONE CHEST XRAY eight years ago, and the tech had posted at the bottom of the report:

:possible pericardial constriction, follow up with catscan", and my cardiologist either MISSED it, or dismissed it, and NEVER even told me about it, I had requested ALL past records, once I was finally diagnosed properly..and found that..... but because they all missed it, my calcification progressed, my heart failure progressed, the PAIN progressed, until I reached 11mm in calcification, and enlarged heart, enlarged liver, JVD, acites, you name it......I had every symptom in the book.  When I was FINALLY properly diagnosed here in las vegas, they couldn't miss it this time, altho, I will tell you, I went for a second opinion here, and a doctor STILL had the nerve to tell me, it was pericardial FAT; and not CONSTRICTIVE PERICARDTIS........so, don't give up........I went to CEDAR SINAI MEDICAL CENTER IN LA, they told me I was too advanced and they were afraid to operate on me.......I then went on to the MAYO CLINIC, where, they wanted to OPERATE THE NEXT DAY, with a pericardiectomy...well, that was a little to quick for me, and I had an appt two days later and was flying directly from the mayo clinic to CLEVELAND HEART CLINIC>>>

at that time, DR. BRUCE LYTLE and DR. ALLAN KLEIN, bought me time, they told me that I was already advanced, but, they bought me a bit of time to go home and take care of things...as the mortality rate is considered high on this surgery, I don't believe that so much anymore, if you GO TO AN EXPERIENCED SURGEON>>>>>EITHER MAYO OR CLEVELAND>>>>

at any rate.......I had surgery at CLEVELAND with LYTLE, and after having arrythmia's...BLOATING, pain, all of the symptoms..........the day after surgery, it was ALL GONE.

I have NOT SWELLED since the surgery, I have not had an extra heart beat since the surgery, and remember, I was the worst case they had ever seen, and I will never forget Dr. Lytles words the day before surgery, he said, "this is a big big big surgery, a heart surgery like no other", and being that I was that bad, I FLEW through the surgery with flying colors and I am living proof, that IT CAN GET BETTER>>>>>>>>>don't give up, I didn't, and I heard every diagnoses in the world.  I don't understand why MORE cardiogoist don't recognize this.......BUT REMEMBER THIS>>>>>..after I came home from CEDAR, MAYO and CLEVELAND, during my time before surgery; and it was all confirmed by all three hospitals what I had.. a month later I had an MRI locally to see if it was progressing quickly.......and the TECH/doctor who wrote the results, came back with a diagnoses of "PERICARDIAL FAT" AGAIN!!!  I called him and told him that I had seen the top cardiothorasic surgeons in the UNITED STATES, and I have constrictive pericarditis, and he said, I stand by my findings...

SO just to let you know........there are some real knucleheads out there, and its your body, and your life.......don't let them get you down........fight, and keep going.........I did, and after feeling like a 80 year old heart patient, I am living a COMPLETELY NORMAL LIFE and feel fantastic....after being on this site for sometime, I dont' believe this to be as "rare" as the doctors want to believe....and I KNOW mine STARTED FROM A MASSIVE FEVER I had at age 19, that was the pericarditis virus, and it took years for it to progress, until I reached the breaking point......when I went into surgery, my right ventricle was caving in from the weight of the calcification, and dr. lytle told me at the time of my surgery, which was JULY 28th, 2005, that if I went home, I would surely die.  I had surgery.......DR. LYTLE does thoractomys, so I didn't have to be cracked open down the middle, he went under the left and right breast, and went INBETWEEN my ribs, so I don't have the "zipper", and being a girl that was important too me, but, that is cosmetic, what was important was living....it was just a positive for me in such a negative situation.  I recently had steriods injected into the incision sites, and they are invisible, it is truly amazing, so, I don't even have a scar that show's I had this surgery.  I am 100% cured, and am truly thankful....after going through SOOO much...

HANG IN THERE, and I am always here to answer any questions you might have, remember, I had been told so many things, and I kept fighting, and if I can give you any other advice.....REQUEST COPIES OF ALL YOUR RECORDS, I have everything from every doctor I have seen in the last ten years plus, down to over 1000 pages from my surgery at Cleveland, every doctors note, nurse report, test results, the play by play in my surgery... you name it, they belong too you; and they will all give you copies, and so many people go out of town and have so many tests, and the results in that city, does not do you any good, you need to have ALL your records for now nad for the future, that is how I found out over ten years ago, that one tech had wrote the diagnoses, and it was missed by the doc, GET all of your records, so so important!!!!........your friend, Cath

Posted 3/27/2006 9:10 PM (GMT 0)
one last thing...and this is too "HOPE"
why do you have to have a heart transplant? What caused the congestive heart failure?
MY thoughts and prayers are with you.
How many opinion's have you had, and what is the reason for your CHF?
GOD BLESS.........Cath
Posted 3/28/2006 10:21 AM (GMT 0)
I'm sorry I replied to the wrong post.I thought this was a heart forum.I apologize for my mistake. I wish you all the best.Storri, I really don't wish to discuss it on this forum. I think people here have enough of their own problems to listen to mine. But I'm on the heart and depression forums if you want to keep in touch,that would be fine with me.Again I apologize for the mistake, and wish everyone here well.
Posted 3/28/2006 2:45 PM (GMT 0)
hope3,
there isn't a person on this thread who doesn't wish you well. everyone i've 'met' has been supportive and caring. good luck with your condition.
christine
Posted 3/30/2006 5:25 AM (GMT 0)

Hi everyone!  It's been a while since I've posted and I've been trying to catch up on the reading.  Great to see your postings again Cathy...sounds like you are doing great.  I would echo what you say to the new people...don't give up hope!  Scott...sounds like you are doing great too!  Maya...hang in there...it has to be a good sign to be down to 1mg doesn't it?

I'll keep checking...I'm 15 months post surgery now and still feeling great!  I appreciate it every day.

If I can help with my story in any way, let me know.  Nan

Posted 3/30/2006 5:37 AM (GMT 0)

Christine...good luck on the 14th!  Who is doing your surgery at Mayo?  I had my pericardiectomy there Dec 15 last year.  I felt immediate relief and feel like I have a new life.  Let me know if I can help in any way.  Good luck...I'll be thinking of you!

Is anyone else continually amazed at how many of us there are when this condition is so "rare"? 

Since surgery my thyroid is out of whack...anyone else have that problem?  I was tested several times before surgery and all were normal.  I still feel great.

I'll check back soon.  I hadn't checked for a while but didn't get an email of a new posting either...I was suprised to see 3 new threads!

Great to connect with all of you veterans and welcome the newcomers!

Nan

Posted 3/30/2006 4:16 PM (GMT 0)

Nan,

thanks for the good wishes. Dr. Orszulak is doing the surgery. Dr Nishimura isthe cardiologist that I'll see a couple of days prior to the surgery. I guess that would all sound more stressful if living like this wasn't so dreadful. IF surgery is the only path out of this particular hell, then i'm redy for it.

glad to hear that you are so well 15 month later!!

chrisitine

Posted 3/31/2006 3:55 AM (GMT 0)

Hi Storri:

I can sure identify with you.  I've seen "suspected pericarditis" throughout my records for a period of almost three years but received absolutely no treatment for it, in the early stages or otherwise even though the symptoms appeared within a few days of my original bypass surgery.  Now, Im stuck with the CP.  One of the heart centers said it could have been treated with steroids and antiinflamitory drugs in the early period and the CP might have been prevented but I have no confirmation on it.  It was good to see you back online.

Les

Posted 4/1/2006 7:58 PM (GMT 0)

Les,

Maybe your CP could have been prevented with treatment - but I wouldn't want to bet on it. I collapsed 15 months ago. Rushed to the hospital. Ultimatley diagnosed with acute pericarditis. Minimally treated and sent home (home was 2000 miles away). My local doctor got a cardiologist involved right at the beginning. We tried anti-inflammatories of all stripes, steroids (but that's only good for short term use - not a good option for long-term use), rest, activity, everything that some journal article had ever suggested. Surgery was always a last ditch option and only if they couldn't manage what had by now become recurrent pericarditis. Ultimatley, they sent me to a specialist at our regional teaching hospital where they performed a cardiac MRI and found adhesions. So, even after all the standard (and some not-so-standard) treatments for pericarditis I still ended up with CP.

So, maybe your outcome would have been the same even if they hadn't failed to treat yourpericarditis more agressively!

Since yours appears to have been caused by surgery, though, maybe the steroids and NSAIDs right after surgery might have helped. Is it certain that something couldn't be done now? Have your doctors consulted with the Mayo or the Cleveland? Perhaps there are options available there that are not available at home. I live in a small western US town, so almost everything except common procedures is not available locally. We're all used to the idea of consulting with bigger medical centers, but I've also lived in major cities where that is not the mindset of patients or doctors.

I hope you find an avenue to better health. I wouldn't wish CP on a rabid dog.

christine

Posted 4/2/2006 4:11 AM (GMT 0)

Christine...

The minute I woke up I said "my head doesn't feel full anymore"  Do you have the pressure in your head like it's going to pop at any minute?  That was gone right away.  The strangled throat sensation was also gone forever thank goodness...that was awful.  The fluid left slowly.  I slept slept slept and truly felt rested for the first time in 2 years...before that I would wake up and feel like I hadn't slept and my face would be so puffy.  After surgery that was gone and I looked like a different person...like me again.  It's all worth it.  You'll be fragile for a while as you heal but healing is fast.  The pain is manageble too.  I wish you all the best.  I was at Mayo in Rochester too...I'm so thankful for that place.  Dr. Schaff did my surgery.

Did any of you buy gifts for your surgeons after surgery?  I always intended to but have not...still might.  Just wondering.

Les...hang in there.  I'm so sorry you are suffering.  I'm trying to remember if you've been to Mayo or Cleveland for an opinion?  Seems like you've been to Cleveland but I can't remember. They told me the same thing about the anti-inflammatories and steroids...and interestingly, when I had my first "attack" they called it pneumonia and pleuritis and I took major advil and it helped immensely.  I just think my self-medication prolonged the inevitable...I was diagnosed with CP 3 years later after another round of some nasty fever.  Anyway...keep searching and don't give up.  My surgeon was some sort of legend at Mayo...maybe you could call him or have your records/scans sent there for an opinion...?  I want relief for you!!!

Good luck Christine...I'll be thinking of you...I'll hug my red heart pillow (you'll get one) for you...I still sleep with it :)

Nan

Posted 4/2/2006 5:21 AM (GMT 0)
Scott...
Good to hear from you, was wondering how you were doing. You are so right about CP sometimes being a waiting game because that is the way I feel. I went to Mayo and to Cleveland but since my symptoms are not visible the doctors cannot justify surgery, in fact they do not even dare diagnosing CP yet. But I can feel my body going downhill and has not been the same since my acute pericarditis attack last March.
I am curious about your mention of metabolism. Are you saying that your metabolism was higher when you had the CP and that there is fatigue now even after the surgery? But you are only 5 months-post so you still have some recovery to go yet.

John
Posted 4/2/2006 11:34 AM (GMT 0)

Hey Nan,

Always good to see you; and to know you are doing well!  I didn't send a card to Dr. Lytle, I am not sure why, the man saved my life there is no doubt, and I probably should.  I had such a problem with the hospital because of that ONE nurse, and Dr. Lytle had nothing to do with that, you can get that one "bad" nurse anywhere....but, I am glad you mentioned it, because I should write him a note; and thank him.  Also Nan, if you are having trouble with your scar, you can have steriods injected, and it no only gets rid of the bump and the redness, it LITERALLY erases the scar completely.  I had it done three weeks ago, and you really have to LOOK closely to see anything, I am shocked at how well it worked...so something to think about...  Les, I am so in touch with your emotions, and I too could have been saved a lot of heart ache...pun intented!  HAD I been treated with steriods as well, but, it was missed by so many doctors for so many years, that it progressed to the point of no return.  I really wish doctors would recognize this disease more, I disagree with ALL of the postings with doctors suggesting this is rare...especially after finding this site.  I am shocked at the people that have posted on here that have symptoms, or finally have been diagnosed....its not as RARE as they would like to think....it just goes missed or misdiagnosed instead.  I had so many tests that showed that I had it, and it fell on deaf ears.  But, the good news is a pericardiectomy is not doubt the cure, not an easy one, but a cure, I wish you all the luck in the world!!!!!!!...JOHN99, in answer to your question, my fatigue has all but disappeared since the surgery.  I don't have my strength back, after being in bed and I was unable to do so little for so long, that I need to build up my strength, but the fatigue is completely gone.  Its like I never had the disease, every single symptom that was associated with CP, I HAD>>>and every single one is gone.  Christine, I wish you all the luck in surgery, I have to tell you, mine was seven months ago, and I really wish I had done it sooner.  Had it not been for NAN and so many others who went before me, I still might be sitting here, or possibly dead.  Everywhere I read about the mortality rate, and it scared me so badly, then I came here, and read success story after success story...so we all have learned here that surgery with an experienced surgeon is the answer to a happy ending, and rid of this HORRIBLE DISEASE>>>that takes away so much from you.  I am now thankful for so many things, and view life completely differently...I stop and smell the flowers now, and so does everyone around me.  We no longer take life for granted, and are truly grateful for every day......xxxx to all..........Cathy

Posted 4/2/2006 4:03 PM (GMT 0)
Hi everyone,

I haven't been on the forum for a while and was just catching up on all the posts.  It really helps me to read everyone's posts when I start feeling like no one understands.  I finally have my referral to Mayo but it is still over a week away and the way I have been going downhill the last few days it seems like eternity.  Has anyone ever seen any of the Dr's at the Mayo clinic in Phx?  Just wondered if there were any of you that had luck there with a particular doctor.

Marcia

Posted 4/2/2006 4:29 PM (GMT 0)

Hi Marcia,

good to hear from you again. i talked to my doctor about AZ also - much better weather than MN in the early spring! He said that the MN-Mayo is the center of excellence for pericardial reaearch and surgery. I doubt that means the AZ-Mayo is 'bad', but I wonder if they would just refer you back to the MN-Mayo....

Are you scheduled at the AZ-Mayo? Are thinking about trying to transfer to the MN-Mayo?

How are you going downhill? What are the symptoms? Does your local cardiologist know?

christine

Posted 4/2/2006 7:17 PM (GMT 0)

Hi Marcia,  I just wanted to welcome you back to the forum.  I am really sorry that your not doing so well.  I hope that you do continue to utilize the forum as a support system.  There are many kind caring people here that understand just what you are going through.

I am really surprised at how many of you have been treated at the Mayo Clinic.  I have Multiple Sclerosis dx'ed in 2001 by brain biopsy.  The surgeon who performed it came down here (missouri) from the Mayo Clinic as no one around here would do it.  I also have some heart problems and Autonomic Dysfunction Disorder.  A couple of weeks ago my Neurologist wrote a referral for me to go to the Mayo Clinic.  Which is quite a distance for us.  Anyway, I was wondering if any of your experiences were like that of a teaching hospital...with the doctor having students follow him.  How was the level of care? 

Posted 4/2/2006 8:13 PM (GMT 0)
elisha,
a number of people i know personally (even beyond my circle of fellow sufferers here) have been treated at the Mayo and every single one raved about the level of care and the level of caring. no-one mentioned the doctor/student routine - either as present or absent. i'll be able to tell you from first hand in another couple of weeks :)
Posted 4/2/2006 8:16 PM (GMT 0)
PS - elisha, the Mayo is a long way from Idaho also, so I understand your comment about having to travel. When are you expecting to be there?
christine
Posted 4/3/2006 2:01 AM (GMT 0)

Sorry everyone I accidentally responded on a new thread.  As I mentioned there I am "going downhill" by now having constant pain, trouble breathing, rapid heart rate, irregular heart rhythm and don't forget the severe fatigue.  I am really putting alot of hope in my appt on April 11 at Mayo.  I have heard alot of good things about the Mayo in AZ.  Does anyone else have abdominal problems?  i.e. stomach pain, bloating and a lot of discomfort after meals?

Marcia

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