Upcoming Pericardectomy for Constrictive Pericarditis

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lmbond
New Member


Date Joined Jan 2012
Total Posts : 1
   Posted 1/15/2012 2:39 PM (GMT -6)   
I am new to this forum and have been comforted by reading so many posts by people who have experienced the pericardectomy and are doing well afterwards.  My medical history is complex, but I'm a 52 year-old female currently in right-side heart failure due to constrictive pericarditis.  I had rheumatic fever as a teenager (thought it was mono) and didn't know it until my heart surgeon saw my heart valve damage and confirmed that nothing else causes that kind of damage.  I had Hodgkin's Lymphoma at 21, cured by extensive radiation to the chest, which likely mutated cells that caused my breast cancer 21 years later at 42.  During the breast cancer treatments (chemo) I had to have a pericardial window to remove fluid from around the heart.  All seemed well after that.  A few years later, I started to have heart problems.  Tests showed I had a bad valve.  As it turned out, when I had my open-heart surgery in June of 2010, I had two valves replaced with titanium - the aortic and the mitral, and a clean-up on the tricuspid.  Though I anticipated a decent recovery, it never happened.  Now I am in worse shape than before, can only drink a max. of 2 liters of fluid a day due to ascites, causing extensive fluid build-up in my abdomen, which I have to have drained more and more frequently.  The doctor has me on Indocin, an anti-inflammatory, to try to reduce the inflammation of the pericardium, but he doesn't think it is likely to work, just an attempt to avoid surgery, which is more risky due to my extensive radiation to the chest. 
 
I have a consultation appointment with a cardiologist specializing in heart failure at the Cleveland Clinic in Florida this coming week.  However, I am worried about where to have the surgery.  It is clear that you need a surgeon with extensive experience in this specialized surgery, and though from many perspectives (mainly financial issues) I really want to have the surgery near my home in South Florida, I realize I may have to travel to the best facility to have the best outcome.
 
Any words of experience, encouragement, suggestions, etc., are welcomed.  This has been a tough year.  Due to my health issues and the economy, we lost our business last year, so life has been very difficult for the last 12 months, plus.  I'm now working full time for someone after being self-employed for 20 years.  I haven't missed a day of work, but am afraid they'll let me go when I have to be out for surgery/recovery.  When I had the other open-heart, I could stay home and rest, or take a quick nap at my desk.  Now, I must force myself to go to work every day whether I feel OK or not.  Maybe it's good for me, maybe I need to push myself a bit, but I worry how I will do after the surgery.  I'm also afraid I won't survive it.  I have a strong faith in God, and as you can see from my history - I am a SURVIVOR, but this is wearing me down.
 
Thanks for any input.  Much appreciated.

stkitt
Forum Moderator


Date Joined Apr 2007
Total Posts : 32602
   Posted 1/16/2012 11:14 AM (GMT -6)   
 
First of all welcome to HealingWell.  I am sorry we have to meet like this but I am very glad to know you have read the stories of others and they have helped you.
 
You do have a very complicated history and I cannot imagine what you have been through or all the feelings you must be experiencing.  Coming here and posting your fears was very brave of you.  Sharing our fears often helps us to not feel alone as holding fears inside can eat away at our souls.
 
I believe that knowledge is power and I am glad to see your Drs. are from Cleveland Clinic.  I have only heard good things about CC and many people praise the Drs. and the rest of the staff.  Be sure to write down all your questions you have for your Dr. before your appointment as well as ask for clarification when you are one on one with your Dr.  Remember we don't always think to ask all of our questions when we are feeling anxious.
 
Take things one step at a time and don't get caught up in anticipatory thinking. Stay in the moment as that is all we truly have.
 
I will keep you in my prayers and please  continue  talking with us here in the forum.  My email is open if you would like some personal support. I would be happy to email you.
 
Kindly,
Kitt

 
~~Kitt~~
Moderator: Anxiety, Osteoarthritis,
GERD/Heartburn and Heart/Cardiovascular Disease.

www.healingwell.com

"only as high as I reach can I grow, only as far as I seek can I go, only as deep as I look can I see, only as much as I dream can I be"

Vincenzo de'Medici
New Member


Date Joined Jan 2012
Total Posts : 2
   Posted 1/16/2012 9:39 PM (GMT -6)   
I am sorry to hear of your health issues and can empathize with your concern over an impending pericardiectomy. I just wrote about my experience with chronic pericarditis and my pericardiectomy. Perhaps you'd find something useful in my description (http://anunexpectederror.blogspot.com/2012/01/living-without-pericardium.html). One thing you might suggest to your doctor is corticosteroid therapy (Prednisone). A description of treating recurrent pericarditis with hight dose Prednisone can be found here: http://circ.ahajournals.org/content/118/6/612.full

Good luck!

JillD
New Member


Date Joined Jan 2012
Total Posts : 2
   Posted 1/17/2012 4:50 AM (GMT -6)   
Hi there, its good to hear your going to the cleverland clinic, they have a very good reputation and are on the ball with the latest research and medicines  . Let us know how you get on. best of luck and wishing you good health for the year ahead.
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