Diagnosed with Constrictive Pericarditis after 2 years

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Bro3ney
New Member


Date Joined Apr 2014
Total Posts : 2
   Posted 4/29/2014 2:50 PM (GMT -6)   
Hi, I am new to this post and have been doing a lot or research lately with regards to my recent diagnoses of Constrictive Pericarditis.  I live in the UK (North East of England) and feel like I should share my experience so far in the hope that someone suffering the same problems I have may get answers quicker.
 
My story goes something like this:
 
in April 2012 I was a fit 31 year old male, 5'11 tall athletic/muscular build, weight 14 stone.  Trained 3-4 times a week and was doing well in my career.
 
At this time I fell ill with a suspected virus which knocked the hell out of me for around two weeks.  The suspected virus caused bad sickness (at both ends).  I had fever like symptoms, cold sweats exhaustion etc.
 
Around two weeks later I returned to work 1 stone lighter than before and looking like crap, but thought I was over the worst.
 
Then about 2 weeks later I was getting extreme pains in the centre of my chest every time I breathed in. I have broken bones before and never experienced any pain like this in my life.  I felt that bad I went to an emergency Dr, who said that I had suspected pleurisy and prescribed me strong pain killer and anti inflammatory. 
 
Around 8 months later December 2012 I was feeling healthy again and back up to normal weight and fitness and was feeling good until I was struck down again with the exact same symptoms as before, except this time it hit me harder.  I had a violent cough that made me physically vomit.  I remained feeling very poorly for around 10 weeks.  During this time I had lost 3 stone in weight, had no energy, no appetite, had strange heart fluttering sensations, crazy headaches and pressures in my head.  If I leaned forward I would like I was being hung upside down and all the blood was rushing to my head.  I could also feel my neck pulse throbbing on the right side of my neck, which felt like I was being choked.
My legs and ankles were also swollen (worse on an evening).  I went to my GP who conducted blood tests, stool samples etc.  The stool test came back normal.  The blood tests showed that my LFT's were elevated.  By this time I had bad pains in my chest and abdomen (particularly on the right side) The doctor said that he suspected I had a bad virus that was taking my body longer than normal to fight.  I was told that if my symptoms got worse I should go to the A&E dept.  In the meantime they referred me to have scans on my liver.  The appt was 6 weeks away.
 
A few days later I couldn't take the pain anymore and I drove myself to A&E.  After 3 hours of waiting I was seen by the most obnoxious Dr, who basically said "This isn't an accident or an emergency, what are you doing here"  I was furious and demanded that he do his job and check me over.  The Dr reluctantly took bloods from me and sent me away.  A few days later I received a letter from the hospital asking me to come in for urgent tests on my liver, which I did.
 
The tests revealed, no scaring or enlargement and no blockages.  The scans did however highlight fluid build ups on the lining of my stomach and chest.
 
Over the next few months I was seen by several Dr's in the AAU at the hospital.  By Mar 2013 I had bloods taken every few weeks.  My LFT's remained abnormal.  I was tested for all the obvious, such as T.B and HIV etc.  I had 3 x inconclusive HIV tests, which worries the hell out of me. Then around June 2013 I saw a liver specialist, who couldn't give me any answers either.  I said that i was concerned about my inconclusive HIV tests and had been worrying for months for obvious reasons, to which the Dr said "No that was eliminated back in APRIL.  I was furious, I couldn't believe they had let me worry about having HIV for months when they knew all along that I was HIV negative.
 
By this point I felt like I was not been taken seriously.  I know my body and I know when there is something not right with it.  I knew that there was something really wrong with it.
 
I started to slowly put weight back on and I am maintaining at 12 stone.  I have stopped training and I am not at work.  I get short of breath and my heart feels like it is pumping hard.
 
around AUG 2013 I was out walking with my brother in law, who is a Dr in training and was explaining all my symptoms to him.  I showed him my neck, which was physically pulsating with my heart beats and my legs which were extremely swollen.  He said that he was concerned about me and that I needed to go back to my GP ASAP.
He told me that I needed a Echocardiogram, which would show and constrictions to my heart or problems with my heart.
 
I got an emergency apt and saw a different Dr, who listened to me and said that she thought I was suffering from stress and anxiety.  She gave me an ECG, not an Echo as I requested and that was that.
 
I then attended my quarterly apt with the liver specialist, who said he had done all the tests he could do.  He then said that he would refer me to a heart specialist to check my heart.
 
I attended the hospital in MAR 2014 for a series of tests prior to my apt with this new Dr.  The tests included an Echo.
 
two days later I received a letter from the hospital stating that the Echo has highlighted  problems with my heart.
 
I got an urgent apt and saw a Cardiothoracic Dr.  Within 5 minutes of listening to my heart with a stethoscope he said that he believed I had Constrictive Pericarditis and this was confirmed with further tests on my heart.  I am now awaiting to have a Pericardiectomy.  I have also been told that I have got signs of Pleural thickening on the lower left lung.
 
I am just waiting for the Hospital to find a surgeon who is most suitable to do the operation.
 
If anyone has taken the time to read this I appreciate it!  can anybody offer me any advice about preparing for the op, things to avoid, diets that could help recovery etc.
 
Kind regards
 
Aaron

stkitt
Elite Member


Date Joined Apr 2007
Total Posts : 32602
   Posted 4/30/2014 12:50 PM (GMT -6)   
Aaron,
 
Hello and welcome to HealingWell. I have read other stories and heard other stories similar to your as well as other medical problems that Drs. misdiagnosed.  However, I suspect that is not the normal as I know many awesome Drs.
 
You did make me smile with your comment re the DR. said, "This isn't an accident or an emergency, what are you doing here".  I have met Drs. and heard Drs. make that very same comment and it is truly a poor thing to say to anyone .
 
I am wondering if you sought out a second opinion from another Cardiologist just to be on the safe side?
 
I hope you understand that we are a peer support group and not able to answer your questions as the information your seeking needs to come from a medical Dr.
 
I will post you a link to read but in no way am I telling you what to do in preparation for your probable surgical experience. Remember to be your own best advocate.  Write down all your questions and do not sign a consent for surgery form until your questions are answered.  I will say a prayer for you and will be waiting to see how everything goes with your procedure.
 
 
Kindly,
Kitt
 
 
~~Kitt~~
Moderator: Anxiety/Panic
and Heart/Cardiovascular Disease.



"She Stood in the Storm & When the Wind Did Not Blow Her Away, She Adjusted Her Sails."
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