just had a total pericadiectomy at 36 yrs old

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dbestmommy
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Date Joined Aug 2012
Total Posts : 2
   Posted 8/10/2012 6:22 PM (GMT -6)   
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)


getting by
Forum Moderator


Date Joined Sep 2007
Total Posts : 42385
   Posted 8/11/2012 5:56 AM (GMT -6)   
Hi Dbestmommy,

I am not from this forum, but I would like to welcome you to HealingWell. I hope that you get some responses soon. In my opinion, the pain could take awhile to go away. But I think that is a normal healing process. There will be others with more experience coming on to help you. I hope that you feel better soon.

Take care hon.

Hugs, Karen
Moderator-Depression and fibromyalgia


fibromyalgia, Chronic fatigue, depression, allergies

Doodle1
New Member


Date Joined Sep 2012
Total Posts : 4
   Posted 9/5/2012 5:40 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.

J_Rene
Regular Member


Date Joined Oct 2005
Total Posts : 279
   Posted 9/11/2012 9:14 AM (GMT -6)   
Welcome!

God bless your heart (pun intened..lol) you've been through the ringer. I can't Imagen going thru all you have with 4 kids! I have a 2yr old and thats challenging enough with the little issues I have. I hope you have a good friends/family support. This site is great. I've been coming here for along time and people are very helpful.

I know the feeling about bad drs and er experiences. The heart dr I just seen was more interested in play with my kid then explaining my test results. After I had been there for 2hrs with a toddler bc he had an emergency with another patient. His exact words were " your flap gets stuck, its common, you'll live" umm ok. He never said why it does it and that its causing my issues. Very weird appointment.

So I'm taking my results and getting a second opinion.

I hope your recovery is speedy and you don't need anymore surgeries. I'm glad you had 1 dr that seemed to care.

Hope you're having a blessed day!

motabo
New Member


Date Joined Sep 2012
Total Posts : 1
   Posted 9/15/2012 3:38 AM (GMT -6)   
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!

marie_75
New Member


Date Joined Sep 2012
Total Posts : 6
   Posted 9/16/2012 11:24 AM (GMT -6)   
 
  Oh, it is so wonderful to hear that someone has been through a pericardectomy and done okay.  I am 46 and  have just been diagnosed with constrictive pericarditis.  I was sick for at least a year or more, symptoms were gradual, it's hard to tell.  It was discovered on a CT, looking for a reason for my fever and nausea.  I was hospitalized for 3 days and symptoms calmed down with NSAIDS.
  I am going next week to have an MRI to see if I can have medical treatment or a pericardectomy.  So far the meds help but the pounding in my chest and swelling continue.  It is still quite a shock so I am just trying to get educated and get ready for all the possibilities.  It sounds like this is no easy fix and either way it is going to take time and rest.

ChippyB
New Member


Date Joined Mar 2013
Total Posts : 4
   Posted 3/6/2013 4:20 PM (GMT -6)   
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

Schwaben
New Member


Date Joined Jun 2013
Total Posts : 8
   Posted 6/5/2013 10:06 PM (GMT -6)   
Hi ChippyB, Thanks for sharing your story. My story is very similar to yours to a point. I was just diagnosed with Constrictive pericarditis. I am a 51 year old male with the same symptoms as you. Took going to the 5th doctor to determine what my problem was. I will most likely have surgery at the end of July. Luckily I live in Cleveland and my surgeon is the chief of staff at Cleveland Clinics main campus. I know you said you are doing fine after 2 years but I'm concerned about the long term effects of the operation. (10 to 15 years out) Would be great to hear from someone that went thought this that long ago. Thanks again. Fred
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