Constrictive Pericarditis

[mom2angel]

Hi everyone. I just wanted to give an update and see if anyone else has experienced anything similar. A little history: I had bacterial endocarditis in 1982 at the age of 2. Spent 58 days in the hospital and received a mechanical mitral valve. Had that valve replaced with an adult sized St. Jude mechanical in 1993, because I outgrew the Bjork-Shiley valve. I am now 37, will be 38 in a few weeks. For the most part, I have had no problems with anything heart related. Have been on Coumadin since 1982. I did have 4 bouts of a-fib and/or a-flutter in 1996, 2008, 2010 and 2016. Had 3 cardioversions and one ablation. Other than that, I've been healthy (besides the brain surgery in 2002 to cure epilepsy, and the internal bleeding after delivering both babies )
As of 3 years ago, I really began slowing down, but chalked it up to getting older and raising kids. Last year, the fluid started accumulating on me, and the SOB was worse. I thought the valve needed replaced again. After many appointments with cardiology and seeing a few different doctors and getting different opinions, we went to the Mayo Clinic in Rochester, MN...the same place that did my brain surgery. Mayo did a few tests last month. They think I have Constrictive Pericarditis. They need a few more tests including a heart cath and TEE to confirm a diagnosis. We go back the week of Feb 12th for tests. Testing will be Feb 13-16th. If they want surgery, they will do a pericardectomy on Monday Feb 19th. I'm excited to get some answers and put this all behind me. I'm also glad to hear that they think I will get to keep my mechanical valve. They think it is working great. Does anyone else have experience with Constrictive Pericarditis?
Thank you to pellicle for showing me other options. I really felt that that hospital was going to accidentally kill me by trying to replace this valve for the 3rd time. I finally have peace about this whole situation. Mayo is where I feel we are supposed to be.

 

[pellicle]

Hi there

well I have no experience with Constrictive Pericarditis (I looked it up just now) but that diagnosis makes a lot of sense with respect to your symptoms

I hope that things go well with the surgery to rectify it, and I'm glad to read that a diagnosis which isn't simplistic has been found.

I'll be keen to follow your outcomes in Feb.

Best Wishes

 

[epstns]

M2A - I, too, am far from being an expert, but just from the description of the condition and your symptoms, it makes sense to me. I just hope, along with you, that their proposed solution gets it fixed quickly.

Hang in there. Sometimes it takes a long time to find out what is going on. Sounds like your team is going fine now.

 

[ForeverThankful]

mom2angel, I can't offer anything in regard to constrictive pericarditis but I wanted to tell you how glad I am that Mayo has found a potential diagnosis!

Thinking of you and best of luck with your testing in a couple of weeks.

 

[Nick17]

Hello:

In 2015 I had OHS/AVR Onx. 2 months post op developed Pericarditis. Treated aggressively with Colchicine + Indomethacin for 6mo. Worked great with no effect on INR. Bottom line I Feel great, no signs of pericarditis and INR is stable and in range. There are options and alternatives out there that may be right for you…check it out with your Cardio.

Mechanical heart valves take a lickin and keep on clickin.

All the best,

Nick

 

[dornole]

Thanks for the update. I wish you the best and hope your tests are conclusive with a clear and effective intervention!

 

[mom2angel]

Thank you all for the kind words. Mayo did a TEE yesterday and a heart cath today. The results showed constriction, just like they thought. Monday we will do the pericardiectomy. I’m so excited. I have felt terrible for 8 months or so. I’m excited to be among the land of the living again.

 

[mom2angel]

Double post