Pericardiectomy

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Doodle1
New Member


Date Joined Sep 2012
Total Posts : 4
   Posted 9/5/2012 4:10 PM (GMT -6)   
My husband had a pericardiectomy 5 months ago.  I wish I'd known about this site then.  But, I'm here now.  I am a RN of 37 years but, "constrictive Pericarditis" was new to me.  Does anyone know of the long term problems.  He was healthy before this.  Well controlled DM.  Now he has to be on Lasix 40mg twice a day for fluid retention.  Is anyone else on this.  I have researched so much and even being a RN--I don't know all the answers.  We've only been married 4 years and he got sick last December with cardiac tamponade--which was probably a warning sign of Constrictive Pericarditis.   

getting by
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Date Joined Sep 2007
Total Posts : 42395
   Posted 9/6/2012 6:44 AM (GMT -6)   
Hi Doodle,

Welcome to the forum. I am not a regular mod and don't understand a lot of matters about the heart. I just wanted to welcome you.

I hope that things get better for your husband.

Hugs, Karen
Moderator-Depression and fibromyalgia


fibromyalgia, Chronic fatigue, depression, allergies

rockchick63
Regular Member


Date Joined Sep 2012
Total Posts : 28
   Posted 9/18/2012 11:42 AM (GMT -6)   
hi, doodle
  • 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 , :)

rockchick63
Regular Member


Date Joined Sep 2012
Total Posts : 28
   Posted 9/19/2012 9:10 PM (GMT -6)   
ell, today was husbands cardio apt. i think im more confused then i was before! if that is possible. doctor asked him if he could walk 3 blocks, answer was yes, asked if he could lay down and sleep, answer was yes.... he then said its not time for the surgery, as the risk are way to high, and only 60% chance of a bennifit from the surgery, not sure if his % is correct, but it seems like i read better then 60. i am still trying to figure out if my husand is more winded in the last month as i see it or if its just that i am looking confused , i try to calm down, knowing i need to save my freak outs for later.
i hope to hear from some one with some info soon.
oh, and btw... doc did sc ed. him for heart cath to see inner pressure ( something like that) doc called it a base line reading to monitor him. confused
i really want his records, films, ect to go up to mayo or clevland for someone there to give a opinion. i read others getting the surgery soon after its found, i guess i dont know what determines ones that do and ones that dont??? any info would help.. thanks.. :)
 

marie_75
New Member


Date Joined Sep 2012
Total Posts : 6
   Posted 9/22/2012 7:54 PM (GMT -6)   
 I can sympathize with all of your concerns.  I am 46 and also have constrictive pericarditis.  It was just discovered about 3 weeks ago after a long year of gradually worsening shortness of breath, nausea, palpitations, fever and fatigue.  I have been on NSAIDS  and colchicine and feel better but still can't get back to normal.  I had an MRI of my heart and am waiting for results.  Then I will know if I get surgery or medical treatment.
  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.

rockchick63
Regular Member


Date Joined Sep 2012
Total Posts : 28
   Posted 9/24/2012 7:51 PM (GMT -6)   
marie... glad to hear from you.. :) its nice chatting with others that understand what your talking about, on the other hand i am sorry for your newly found condition, constrictive pericarditis.
i hope you get some good news from your docs next time you go. my husband is going for his heart cath this thursday, this will tell more ( i think) i am really learning there is not alot on this condition, it seems pretty black and white and alot of waiting. for me i like more definitive things , things that have answers.... but when its medical- not always a choice.... :)
i think my husband is having more issues then he is telling or admitting, he seems to really be pulling back on things now, things he did 2 weeks ago... this i dont get or is it stess?? he is not a stressed person at all but this may be different for him, it is for me... i find it scary.. very... marie.. i am glad the meds are helping you out, these were not offered to him, not sure why, this is some of my questions why some get meds.. surgery others dont... did they telll you if you had heart failure as a symtom? edema? ect.... did thy do a bnp, brain neuropathic peptide? his new one was at 154, down from 444... this is good but i see him as getting worse.. i guess this is why i have so many concerns and questions... ill be looking for your repost , thanks, lisa
 

marie_75
New Member


Date Joined Sep 2012
Total Posts : 6
   Posted 9/25/2012 5:26 PM (GMT -6)   
  Hi Lisa,
  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!
 

rockchick63
Regular Member


Date Joined Sep 2012
Total Posts : 28
   Posted 9/30/2012 3:38 PM (GMT -6)   
Hi Marie,
yes, i have noticed him laying around more.. which is so not him... simple things wind him more then they should, his chest feel tight as he calls it, in the center, i notice more winding as well, he does have edema on the lower legs, which is a constant battle to keep them down. he claims he dont feel different then he always has, but i am not so sure he would admit it.
we went last thursday for his heart cath to get proper measurements of blood flow, doc said prior to, that all test conforms it and he expects a normal reading since he is at rest during the test, the test only shows bad readings if you have trouble even laying down, and he claims not to. the heart did check out fine other then it did confirm constrictive pericardits..... but i expected it too since he has the mri of the heart done.... he has calcium too not sure if i mentioned it n prior post. also the true way to know if your n heart failure is having a BNP done, he has them monthly... it shows the stress on the heart from stretching.. due to a hormone that is released from the brain.
but... i noticed the numbers when they are lower dont mean he acts like he feels better... this i noticed..
his is from inflamation as well, simple pericarditis.... now how and why we dont know... they have ran many test trying to find cause... so far none... most cases are unknown.. which is not a bad thing... i understand treatment is the same no matter how... now the cause if found can be a determining factor in how you will respond later (after surgery), unkown is good for the end result post surgery. also i noticed his face swollen after laying down too, this was the first thing i noticed other then him tired all the time... i recently started to notice his color in skin , looks pale and ill looking.
since he rarely says anything its hard to tell what all he feels.. but today he did take a water pill.... that says alot for him, i have him on a very healthy diet, low sodium and restricted fliuds which he dont do so well on.. i still dont see a difference. ill look for your next post.. glad your doing ok.... hang in there, lisa

marie_75
New Member


Date Joined Sep 2012
Total Posts : 6
   Posted 10/4/2012 8:25 PM (GMT -6)   
I finally saw the cardiologist today, and it was great news.  The MRI showed no calcium around the pericardium.  The pericardium is thick, but it looks like inflammation and not as much permanent damage as previously thought.  The real question is where did the inflammation come from, the rheumatologist said no lupus and no immune disease.  I am staying on NSAIDS and colchicine until symptom free for a month.
  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.

rockchick63
Regular Member


Date Joined Sep 2012
Total Posts : 28
   Posted 10/5/2012 12:50 AM (GMT -6)   
marie, this is great news!!!! i am happy for you and that it is not cronic or clacium. for him i am not sure how much calcium he has, it was put clear to us that he will have the surgery but not till he is worse off, this week he seems to feel better, last week was tough, i think from the stress of the test ( heart cath). he has been more active n lowering his fluids and still has on and off chest pressure, at time i do notice the rapid breathing but like i said, he never complains, i wish he would :) . the one thing i am not clear on is that he dont seem to have issues all the time, other then leg edema, and signs of heart failure.... which are early signs and common. did you have a bnp test? his went from 444 on the tst down to 154, his is as well improving but i dont see a difference in him. yes the diet is not friendly, i feel for you there, i am retired so i am the cook and with not alot to do its a full time job coming up with meal ideas for a man who loves food :) he still has the rheumatoligist to see yet, he did go to infectious disease doc as he has looked for active virus in him, non was found, they did ana and some other prelim lupus and schelerderma act test those have been neg as well, but there are more extensive test he will need to have done to formally rule these out, my mother had schelerderma and that was not pretty at all. she had the one that hardened all vital organs, hope this is not his case. we are gonna go do some things this weekend, nothing to challenging ( i hope) hoping he tolerates it well, it is odd going from a active life to doing nothing at our age, i dont feel i should go on and leave him here alone , it feel rather selfish. on his last visit to the doctor i feel he did tell him he had things going on more so then prior, doc said we are gonna take the watch and see approach as the surgery is tough with only 60% chance of symtom relief. i have been reading , there are few types of this stuff, so its totally not clear to me yet.. did thy tell you the thickness of the pericardium? also i was told to look into vit, D3 , it may help NOT form calcium for you... check into it... :) look forward to hearing from you soon.... get better and glad your news was great!!! lisa

marie_75
New Member


Date Joined Sep 2012
Total Posts : 6
   Posted 10/6/2012 1:23 PM (GMT -6)   
Lisa,
  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

rockchick63
Regular Member


Date Joined Sep 2012
Total Posts : 28
   Posted 10/6/2012 2:59 PM (GMT -6)   
hi marie, your condition sounds more like pericarditis,which is inflamation and causes fevers as well at time... i hope you get to feeling better soon, it is no fun to not feel well. yes, i keep records on his bnp, this helps me with his diet and fluids, ect, and to try to over all keep the load off him.. the only thing i dont have is the heart cath numbers, i may get them later on. this week for him seems to be ok so far... i did notice shortness of breath after a walk through a parking lot... i do need to gt out more then i have been, i kind of want a break from it all and not worry if what i want to do will wind him, my issue is, if i want to go he will too, so now i just dont go. and your " why me" day.. lol, i have many of those and i am healthy, more so lately.... :) its hard on everyone.... i just wish there were a easy to fix to the cronic constrictive type...good hearing from you, take care and keep in touch.... feel better too:) , lisa

DStein
New Member


Date Joined Aug 2012
Total Posts : 5
   Posted 10/6/2012 3:59 PM (GMT -6)   
I dont know if this helps but i had a pericardectomy on the tenth of September, with me the doctors did not want to wait at all, after my mri thesurgeons called, met with them on a wednesday, had my pre op friday and operation that following monday. My surgery was done at the VA Palo Alto in California by a Stanford team of doctors. Daniel

rockchick63
Regular Member


Date Joined Sep 2012
Total Posts : 28
   Posted 10/6/2012 5:42 PM (GMT -6)   
dstein, how are you feeling now? any better then you had been prior to? i am sorry to hear you had to have this surgery, ive read its not a easy one, but i am glad its behind you now, my husband has this as well, for some reason thy want to take the watch and see method, i notice not many get the same treatment choices... odd... did you have the calcuim as well? and heart failure symtoms ? info will help, this is some odd stuff.... good hearing from you. lisa

DStein
New Member


Date Joined Aug 2012
Total Posts : 5
   Posted 10/6/2012 9:28 PM (GMT -6)   
Lisa,

Not sure if i had the calcium part, i know they removed almost all of the front expect where it was stuck to,the heart and i beljeve they left my back side saying it didnt,need,to,come,off and is,more,risky and,not worth it. I had severe swelling of the legs, feet, ankles, stomach and fluid around my lungs only thing i have left now is still a little fluid in my lungs now which my doctors say is normal and should resolve i know every xray since the surgery has looked a little bit better than the last so hopefully that returns to normal,as,well. I feel a lot better than i did still have a small,amount of ,pain from the surgery,but a lady also, rear ended our car luckily i had a pillow between my seatbelt ,so other than some pain and anxiety i feel much better if you want to talk on the phone and feel comfortable with that please feel free to email me at daniel.steinmann@yahoo.com and i will,send you my number. My doctors said they didnt want to wait as it only gets worse, i was also unable to lay flat and had extreme shortness of breath. Daniele

rockchick63
Regular Member


Date Joined Sep 2012
Total Posts : 28
   Posted 10/7/2012 12:30 AM (GMT -6)   
sent you email..... :) daniele
he has edema in th feet and lower legs,but for some time, years..... mild chest tightness with some fluid behind the heart... non n lungs and i am sure some n stomach, he has the juglar thing going on, if you know what im talking about..... were you tired alot? he is.... respond to my emails.. thanks and get better.. :) lisa
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