AVR/MVR - Splenectomy with complications question

[Jetski312]

Hi all!

I have a few questions about complications to a double valve replacement & splenectomy with complications.
Long story short, in October 2015 at 28 years old I was having recurring joint pain that moved from location to location, drenching sweats day and night (imagine playing basketball and my hair was dripping wet, Sunday during church) a recurring cough and general fatigue. I woke up with horrendous stomach pain and ended up going to the ER after leaving work early. After several tests, they told me that my heart and spleen were enlarged and there was fluid around them, my WBC count was through the roof and I likely had lymphoma… I was ambulanced to the cities (Minneapolis/St. Paul) that evening and underwent emergency heart surgery at 2pm the next day due to Infective Endocarditis caused by Abiotrophia Defectiva.

Fast forward, after replacing my Mitral & Aortic valve with mechanicals, warfarin therapy, destroyed sleep habits, severe pain, 6 weeks on IV antibiotics via PICC, the stomach pain came back AND was in my shoulder now too. I had another procedure and spent MORE time as an inpatient (the staff loves my optimistic, positive attitude despite all my circumstances) and after a few weeks since discharge the shoulder, sternum, stomach pain is back again.

All said but not done, I’ve spent 28 days inpatient (9 in the ICU) with at least 1 more procedure scheduled, one doctor said you shouldn’t have any pain, another doctor says its normal. At my age, what happened was uncommon, so I had 7 services from the hospital following my case.

I’ve read a lot, but haven’t come across much as far as pain complications regarding heart surgery, but I’ve also had a lot plague me in addition. I was wondering if anyone has dealt with severe shoulder pain (4 months) post-op? Mind you as I said, I am very young and have a high tolerance for pain, nothing seems to help this. Im scheduled for another procedure Wednesday 2/24 in hopes of fixing the stomach issues, but the shoulder pain persists…

 

[pellicle]

Bloody Nora mate you've been through the wringers!

I've not had anything like that (although I've had 3 OHS, with 2 post op debridment surgeries to clear a surgical infection from the last OHS) but that seems to be under control

Looking at your situation I'd wonder if they have actually cleared your Abiotrophia infection properly? From my quick read its difficult to culture, and in my case my infection was propionibacteria which is also difficult to culture. The labs were saying there was no infection and there was some heated discussion at the foot of my bed around that topic.

I'm willing to bet that your INR is up and down with all this, but when you clear these trials it will settle down.

Keep up posted on the outcomes.

 

[dornole]

Cheez wiz, Jetski312. You must be tough in addition to having a great attitude. Are you at Abbott? (That's where I go, I'm in Mpls). They are great but if you continue to have mysterious complications it might be worth going to the Mayo in Rochester for another perspective.

I agree with pellicle about the infection possiblility. Is the Infectious Disease dept still involved? Not that you probably want another 6 weeks of PICC line but . . . .

Hope you are not too far from home during all these hospitalizations, I assume you live outstate. Need anything??

 

[extraordinary]

Hello
i had my 3rd open heart surgery at 24 on-x valve and on warfarin and i've been suffering from shoulder, muscle pain that could travel to my back chest anywhere you name it ...
I don't know what it is but believe me i feel worst after the surgery will all the complications that came with it .. Hope you will do better soon <3