Fluid around Mason's heart

I have a son with CGD and it has been awile since I have made a post but we are in the hospital and we came in because he was not acting like himself and come to find out he had fluid around his heart.....Yet to be detemined what the fluid is but we do know that it is not a bacterial infection?!!  He also has several lymph nodes throughout his body that are very inflamed just curious if anyone else has had these same issues with the fluid around the heart that can maybe give the docs a better idea on what to look for?  Also we are located in chicago at the University of Illinois if anyone is in the area let me know i wi\ould like to meet you and see about starting a support group of some kind whether it be on the net or over the phone...Thanks Amanda

Submitted by masonsmom on Mon, 2007-09-17 12:05. masonsmom's blog | login or register to post comments
ryan q's picture
Submitted by ryan q on Fri, 2007-10-05 02:54.

Amanda 

i have never experienced any heart problems..

i have had a swollen lymph node in the groin, high hip area that became infected and was drained, packed with gauze and then removed later and left open to heal from inside out.  painful procedure..  constant irrigation with peroxide and saline was the home treatment. i was around 11 yo and still remember the period of aggravation quite well.

i hope Mason recovers soon

ryan q


Karen G Martin's picture
Submitted by Karen G Martin on Tue, 2007-09-18 12:01.

Sorry to hear Mason is having problems. What are they planning to do for the fluid? Keep us updated. I have not had any problem with my heart. I live near Kansas City, not close enough to meet but if you ever want to talk, you can e-mail karen.martin@fbfs.com. I am almost 50 and still kicking, at least today. I was just diagnosed at 40 with CGD. My younger sister was also just diagnosed a year or so after me.  Hope all goes well with Mason. Are they keeping him in the hospital?

Karen


masonsmom's picture
Submitted by masonsmom on Tue, 2007-09-18 13:18.

This is very frustrating for me because we still have no idea what is going on with him and why the fluid was around his heart... They drained the fluid from his heart on Saturday and he is starting to act like himself more and more each day....They are going to biospy a mass that is above his lung on the right side of his chest and also possibly take a lymph node out as well to do some tests on that as well....Not sure what the mass is so hopefully when the procedure is done we will be able to maybe figure out why the fluid got there because all of his blood and liver levels are normal and he doesn't seem to be "SICK" Yes they are keeping us in the hospital till at least thursday because of the doctor that puts him under is only available that day to do the biosby to put him under I hope we don't have to spend another weekend in the hospital so far away from home.  Thanks for the well wishes I will keep ya posted on what happens......When ever it is that we find something out!!!

Amanda


Karen G Martin's picture
Submitted by Karen G Martin on Tue, 2007-09-25 12:15.

I was just wondering how Mason was getting along? I pray all is better.

Karen