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Hi. Remember me? I'm Jackie, I run this website about MS, and we haven't talked in a while but I'm back now. Ironically enough, first blog back, I'm not going to talk about MS at all.

If anyone still reads this blog...you know that I've been totally MIA now for about 2+ months. Yea, sorry about that.

I did some writing while I was gone, however now that I go back and read what I wrote its possibly the most depressing shit you've ever read. So...instead of posting the "in the moment" stuff...I'm gonna post the aftermath.

I spend 21 days out of the month of July in the hospital. I had 5 E.R. visits. 9 days in the Cardiac wing where I was easily the youngest patient by  50+ years, and 4 of those days in the Cardiac I.C.U.

So heres the story, and I'm going to keep it short because...well I want to keep whatever readers I still have.


After being in one hospital for 8 days and having my team of doctors (literally a team) basically give up on me, I was sent home in the state in which I was checked in. I went into the hospital with the most excruciating pain in between my shoulder blades. This pain was unlike any other I've experienced and no matter how I sat, stood, lied down, or the amount of pain killers I took...it stayed...for weeks. It moved up to my head, my hears, my teeth and my neck. I had every test imaginable done, CTs of my stomach and chest, X-Rays, MRIs, numerous amounts of blood work, the dreaded Spinal Tap and many more. I had 3 blood transfusions. I had so much blood taken, at one point they were coming 3 times a day to poke my poor flat veins. It was awful. So needless to say when they decided to discharge me with NO answers, NO improvement, and no suggestions on what to do to get better....I wasn't happy.

So reluctantly I went home...to my parents home to let them take care of me. The next 2 days were hell. I couldn't stand up without help, couldn't walk couldn't cut my own damn food. I was in so much pain and so weak at this point. 2 days later....I was back in the E.R. at a new hospital with a heart rate of 147, a hint of what was going wrong and a plan of action. I had a Pericarditis, which is inflammation around the heart. Which then turned into a Pericardial Effusion (which is a excess buildup of extra fluid around your heart,) which then caused me to have an unexpected surgery and a procedure called a Pericardial Window (which means they put a hole in the sac around my heart to prevent future fluid buildup...and If I'm lucky enough to have this happen again...it drains into my lungs...yay?!)

So, here I am 4 weeks out from surgery...without any of the pain I had before, slowly recovering...and alive. The 2 months that I was dealing with all of this was really tough. Thank god for my Family, boyfriend and friends because even with their help I started to break down, so without them I'm not sure how this all would have played out.

This has opened my eyes to intense problems with out medical system and seriously makes me question national health care (but we wont get into that). But more importantly its helped me to stop bitching. You know, right when your 24 and you start to think that you got the short end of the stick because you have MS...and then you get Colitis....well...It can get worse!

So I have MS and Colitis...big flippin' deal. Its annoying...its gross..but I can live with it. That is the most important part. I can live.

So the good news is that I'm back.. and I've got new stuff to write about.

Oh and P.S. I forgot to mention. Why did I get a Pericardial Effusion? Oh well your guess is as good as everyone else's. We don't know. I am a literal medical mystery, and wouldn't be surprised if I showed up in some medical journal somewhere. There are a few options as to why this could have happened....one is a rare disease called, Still's Disease (but the doctors are skeptical on this one)...another is Asacol. The drug I was taking to treat my colitis. So needless to say I've stopped taking that. Its like a 1-2% chance that is the cause, but there are cases of it happening before and the timing is perfect. I was diagnosed and started the medication 2 weeks before my first symptoms. The last and final option is....we'll never know. Which is scary.

And to part...here are some gross pictures from the hospital. One of me late at night because I never slept in the hospital. and the other of the uber gross drainage tube out of my chest. Maybe I'll post a picture later of my sweet new scars.
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Comments

Mon, 24 Aug 2009 06:56:13

Frickin' love you, Jackie. I'm sorry you've had it so rough lately. I'll keep reading your blog until the end of time!!!!!!!

 

Mon, 24 Aug 2009 07:35:34

wondered where the hell you were - candle lit - I was thinking Pericarditis..team of doctors didnt pick that up - really not tough for a decent heart guy? - get better and enjoy the gift of Fall -

http://bit.ly/7IEIH - great read blog you might enjoy - later Di

 

Mon, 24 Aug 2009 10:13:21

Diane,
You would think it would be fairly easy to find. Who knows, I'm no doctor. But its pretty annoying and discouraging that they sent me home like that. Apparently in the 2 days I was home the fluid increased significantly, but I guess I'm glad I went home, and then switched hospitals...those assholes at the first one prolly would have just let me die.

 

Mon, 24 Aug 2009 11:48:10

That sucks...glad you were able to get the help you needed after they sent you home! Hopefully you are feeling awesome soon...well as awesome as you can, that is! I am fed up with doctors too and am going to stage a sit in if I don't get what I want at the doctor on Wednesday...
Hopefully there was another drug for your colitis you could take since they are mystified as far as cause?

 



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