Leon and others on Still's & Pericarditis

[Guest guest]

Leon and group:

 

If you have pericarditis (even a mild case), please watch for things like

shortness of breath, severe fatigue and tachycardia (racing heart beat).  When I

had it, my RESTING heart rate was in the 160's... imagine what it was like when

I got up and walked around.  I had a very aggravating, dry, non-productive cough

(b/c I wasn't breathing properly) and I was so sleepy from fatigue.  I had begun

to have chest pain, couldn't eat, had no energy to do anything.  When they

discovered the fluid around my heart, they said there was so much of it that

they were going to have to tap into the pericardium and drain off the fluid the

next morning.  Some people have a milder form that can be treated with meds,

mine was too far gone. 

 

I know that there is just a small percentage of Still's patients who have this

symptom, but it is one that can kill.  If you have to educate your doctor

(cardiologist) on this, do so, and even get the rheumatologist involved.  If it

gets as advanced as mine and they have to tap into the pericardium...well,  let

me tell you, it's not pleasant.  You have to be awake for them to do this

procedure.  They numb you, but once the tap is in place and they being to draw

it off... it hurts like bloody hell.  And it took them awhile because they said

the pericardium was thickened, so they had difficulty accessing it.  They drew

off a little over 380 cc's of this bloody fluid that, unfortunately, I was awake

to see.  I cried a lot during the procedure from the pain and fear... seemed

like it took forever.  When they were finally done, they had to leave a tube in

there that they stitched to the outside of my chest.  They then ordered

nitroglycerin in case

it was needed, then they placed me in CCU in critical condition for 4 days. 

During those four days, the cardio doc had to " tap " the tube, meaning try to

draw off any more fluid.  Thankfully, each time he tried, there was none.  I had

about 100 echocardiograms (it seemed) and a lot of other tests for 8 days.  I

still felt crappy, out of breath, did not want visitors and my chest still

hurt.  They finally removed the tube on the 4th day. 

 

I share this b/c I want you all to know how serious this can become.  Am I

trying to scare you? Not really, but sometimes education on this requires a

little fear.  Thank you God I have never had that again, but I see a heart doc

and if I am flaring, the first thing they do is an echo to make sure.  Steroids

were also used and can help, but only b/c it tamped down the immune system

response that Still's causes. 

 

I know there are a few others in the group that have had this, not sure how bad,

but thought it would be a good idea to share my experience with it.  Mine was

called Pericarditis with Pericardial Effusion.  Nothing to mess with.  Not

everyone gets it.  But just in case.

 

Love to all,

Gail (KY)