Pericardiectomy

• my hubby was recently told he had constrictive pericarditis, docs can not find cause at all. i do know my hubby had leg injury(crush) appox 6 years ago, his leg had been swollen, never really went down, then he got vericous veins in that leg as the years went by, then the other leg swollen, edema looking, went to docs several times they all said it was from the injury and veins so no worry.. about once a month during several years with him, he would conplain that his chest was tight like a cold coming on along with  stiff muscles and body aches and tired. nothing that kept him down, he would go to doc from time to time with this, nothing was looked at during this time. after this he had went to doc again complaing of the same things, im thinking doc heard something different or seen something of concern, blood work was done, it came back showing chf, bnp was 444, more test was done. at this time we had thought he was just out of shape and has gaine some weight, 6 ft 200 lbs but good shape as in could do hard labor work. after that bnp ecg, chest x ray along with echo and mri with all these test it was confirmed he had constrictive pericarditis, this was all in july and aug. of 2012, since docs restricted sodium and fliuds to 50 ozs, his legs look better with compression shocks but other symtoms dont seem to be effected, like winded while doing things he once done with no problems. he seems to breath more rapid and a little labord at times but he denies this. i guess if it was gradual he may not see it, idk. his mri showed a 8 mm thick pericadium with calcium, not sure the amount of calcium. he had the neck vein issue, not sure what its called:). he is 44 years old. i am no stranger to the medical field but this is some odd stuff.......like saturday.. (last) he woke up feeling good wanted to go to this featival, but it was raining so we picked another thing to do, which was having a couple we know over for dinnner, things were all good for while, then he seemed to be breathing harder then normal just sitting..... but i keep my eye on him.... since he wont tell you nothing... i let it go, not bringing attention to it or him, he walked down the drive way carring appox 50lb item, came back to the house panting and puffing like he had been on a jog, i said your winded.. he denied..... as he was panting and puffing, he sat down, then took a deep breath in.... his face was reddish.. after taking a deep breath in... he had... 2 short quick involentary inhales of air, never seen this before.. on any one, unless they were crying.... with in mins , he did it again.... then turned pale.... i was getting scared.... as he did not say anything at all. just that he was tired and wated to go to bed. company left and he took his shower and went to bed..... i sat in bed to make sure he was ok....... this is no way going to be easy im thinking at that time....... i got a hard headed hubby with a strange condition, the mix is not a good one.. i called his cardio monday am, they booked him for next slot in sched.. wednesday, tomorrow am, when i talk to the nurse...... her only response is, i cant remark on this, ive never had a pt with this...... boy thhat makes you feel comfortable to boot........ his doc on the other hand seems good, did say he will most likey have surgery..... when its time, i gathered from he doc, that the surgery is pushed as far back as thy can, since its high risk..... it seems like to me, they wait for the person with this horrid thing to get in horrible shape before surgery is done.... is this true????? i hope i find some piece in this nightmare soon..... i cant inagine sitting and watching this horrible thhing waist him away and make him suffer..... hope to hear form you!! thanks , :)

  Restricitve pericarditis is rare and I also saw a lot of good Dr's scratching their heads.  Mine was found on a CT scan but it was not what they were looking for.   I have also heard different versions of treatment and when surgery is appropriate.  I will know more when I go back to the cardiologist.  I know one thing, I will not be afraid to complain.  One thing you said was very true... the onset of shortness of breath and pain was so gradual that I hardly noticed, and I had to rest on the way to my car every day at work.

  Sounds like your husband realized like I did, that I feel lots better when I take time to rest.  Usually I can't sit still, but I have learned to spend some time on the couch lately.  If I don't my heart will pound like crazy and I get nauseated and have chest pain.  Maybe the treatment is different with different causes.  Mine is caused by inflammation, in fact I am seeing a rheumatologist to rule out lupus or another autoimmune disease.  I should know more about that tomorrow, will have to keep you posted.

   The cardiologist's office called and the appointment has been postponed until later next week.  It is driving me crazy, thinking of what he will say about that MRI.  The MRI is supposed to show if my heart is constricted by my pericardium.  I didn't seem to have heart failure symptoms at first but I have more swelling now, even my face is swollen when I wake up in the morning.  The main thing is, there are good days and bad days.  If I am careful what I eat (if I cook homemade veggies and less processed food) and get rest I do pretty well.  If I am very busy and don't take care of myself I will know it quickly.  Hang in there, don't worry too much, we are in it for the long haul!

  I still have pounding in my chest and some shortness of breath, but it is getting a little better every day.  It is much worse when I am under stress (I had a tough week).  I still have chest pain when lying down sometimes.  I do have some right heart failure but it is much improved, I am still swelling sometimes but it seemed to get better with less salt and drinking less fluids.

  I had one Dr. suggest the anti inflammation diet and I bought a book.  It is tough, no processed food and most of the shopping will be done at the produce stand.  That's tough for a Mom of 2 with a full time job and lots of other stuff going on.  I am committed to it, though, if it helps.  The Dr also said committing to exercise every day.  Of course, the key to avoiding surgery is keeping this from happening over and over so the pericardium will not get thicker... at least in my case.

  All I can say is, I hope I continue to get better and I hope this Dr. is right. 

Lisa, I hope your husband gets better.... encourage him to follow up with his Dr and tell him about all his symptoms.  Toughing it out will only do more damage it seems.

  When I feel bad I am grateful if my husband goes somewhere, I don't want to feel like he is putting his life on hold for me.  I usually just lay on the couch and watch TV anyway.  Of course everyone is different, I just hope this is not going to last. 

 I am discouraged today because last night I had a low grade fever when I was a little late with the ibuprofen.  I am wondering if this is ever going away, and I can't understand if the pericardium is causing the fever or if something else is.  Dr's say it is inflammation and they say it will go away but I don't know how or when.  I guess it's a "why me" day.

  My pericardium is not as thick any more according to the MRI, and the cardiologist said it looks like inflammation that he thinks can resolve and be close to normal.  I didn't ask the measurements.

  I was told to take vit D because my levels are low.  I will look into D3.  I had a BNP in the hospital and didn't ask what it was, I probably should ask more questions...... marie