just had a total pericadiectomy at 36 yrs old

i am a 36 year old female and just had a total pericardiectomy . they never found the cuase so they say it was viral. i have been through hell these last 3 months. i was perfectly healthy till this. the only thing i can think of is about a month before this started i had a bad throat infection, i had high fever , my throat was completely closing it was red and white inside . i was literally in the er less than 20 mins i wasnt even seen in a room everything was done in triage.3 tylenols for my fever, shot to open up my throat he looked in my throat and said aaahhh pharyngitis sent me home with antibiotics for 5 days which i did complete and my throat still hurt after the 5 days. youd think he could have taken the time to at least take a culture a simple swab. no he did not. several weeks later my lungs and heart started filling up with liquid i went to the same er becuase its closest to my house with severe chest pain and shortness of breath, the dr was rude sent me home saying i had nothing didnt mention i also had a high fever quid ,no prescription for pain the nurse told me take ibuprofen or learn to deal with the pain. i couldnt believe it! i went to another hospital where there they found i had liquid around my heart and both my lungs i was in icu for 11 days there. they drained 950 cc of liquid from one lung and 650 from the other they said i had liquid around the heart but not enough to remove. the liquid removed from my lungs was tested, every test possible nothing came up. i was sent home after 11 days in icu. 4 days later at home i was awoken by and incredible pain in my chest, i could not move so much i had to end up calling rescue which i begged them please to not take me back to that same hospital i wont name ,and they told me they had to it was the closest to my house. there they found the liquid around my heart had increased so much i had to have an emergency surgey called a pericardio window,. supposedly that was suppose to fix the problem , i was going to be fine after that i was in icu there for about another 11 days. i was sent home again several days later incredible amount of chest pain i did not want to return to that hospital so was taken else where and they found once again my lungs and heart were filled with this mysterious liquid i was in icu there for about 10 days where my lungs were drained again .and a number of doctors were discussing what to do all but 1 agreed i needed to have surgery or i would die. all but the most important one the heart surgeon. there was this cradiologist wonderful dr. he told me he lost his brother at 23 yrs of age from the same condition i had and that he was not going to let that happen to me, i seriously believe he was heaven sent. that dr. had me transfered to the best hospital where the best heart surgeon in miami,fl would be my surgeon, i was transferred on a sunday and surgery was done monday at noon. they went in to remove partof my pericardium but what they found when they went in was very surprising to them i had pus,i had blood clots, i had calcified hard tissue well they ended up having to remove my whole pericardium this was done on july 30,2012 almost 3 weeks . i can not describe how much pain i am having i guess considering i had a sternotomy and the whole pericardium removed but omg i am going through so much, not to mention i have 4 small children which is not making recovery much easier. i am glad i found this page and i was just wondering if there is anyone who has gone through something similar. and if yes how long will this pain last.

Post Edited (dbestmommy) : 8/10/2012 6:27:59 PM (GMT-6)

My husband has gone through the SAME things you have. He had a Pericardiectomy in April. I'll gladly answer any questions you have. I am also a RN.

I've had my pericardiectomy 4 yrs ago. At the I'm feeling real good, its gona take a while before u dnt feel any pain in ur back when u sneeze. Hope u heal until u go a day thinking u ounce had the op!

Hi Dbestmummy :) I had very similar situation to you but thankfully my local Hospital (Wythenshawe UK) could not have been any more helpful so sorry to hear of the situation you have been put through.
2 years ago when I was 36 yrs old over 2 - 3 months i was feeling generally unwell and constantly tired nearly falling asleep at work on numerous occassions and gradually over a couple of months was getting more and more out of breath while walking shorter and shorter distances until I could hardly walk from my car to the office without being exhausted. Went to my Doctors to look into this who picked up that I had extremely high blood pressure, edema in my ankles and my neck artery was swollen so he arranged appointment with the cardiologist at the Hospital. Over approx the next 2 months they did various tests and scans (MRI / Ultrasound etc / Xrays etc) on my chest when eventually I was told that I had constrictive pericarditis and that I would have to be admitted immediatly for a total pericarditectomy as
my heart was in first stages of failure and my right lung was mostly full with fluid. Lung was drained after a couple of days in Hospital which I have to say was the most painfull experiance i have ever had including the eventual Pericardirectomy. Morning of my op I was given a pre op injection and do not remember anything after that until waking up in ICU the next day. Surgeon did tell me the next day that the op had gone well and when they made the insision into the Pericardiam by heart levels instantly shot up to much better outputs. I was back home within a week and as you said for the first 2 months i was in quite some pain but bearable with the pain killers i was given but after this time i soon got over this and by the 3rd month was more or less back to normal feeling back to my old self with no shortness of breath etc and returned back to my office job and back into normal routine. 2 years on I still feel fine,
still have slightly high blood pressure but under control with medication. Wish you best of luck and hope everything turns out well :) Steve