More pics

The hole in my stomach

So... I never really wrote about the whole in my stomach!
My skin has become very very thin from the prednisone. One day my pants tore my skin open. It healed quikly and I thought nothing of it. A couple days later I had massive pain where I had the wound. It was finally so bad I went in. They ended up opening me up in the ER and realizing it was too deep. I was taking to the OR and they cut out all the infection.. I had to get it packed for the next two months with gaze!! SICK
heres some pics

Its been a while...

Hi Everyone.. so Its been a while and Im sure your all hanging from my last post haha.
Ok so I had an MRI and the mass was a blood clot. They things its caused by the port, so I will be getting injections for like..umm ever. They were suppose to move the port up out of the heart, but have yet to do that. Its crazy that they caught it in time! could have been a lot worse since its in my right atrium(which goes to the lungs)

So, since Ive had another TEE and the clot seems to have disabated, but that does not mean I can stop the blood thinners. I go for another MRI in a month to check up on it.

I went to a hemotologist appointment. It was my first time seeing this doctor. He was ok, has some weird ideas and has only had one other HES patient. He think I should be on chemo as well...mostly to get me down on the prednisone. Im really not sure what Im going to do at this point. Im waiting for him to discuss things further with the other doctors

I think thats that.. for an update!

A Mass in my heart

I was told a couple of months ago that I had a mass in my heart. A month later I had MRI.
Yesterday the results were in
I have a blood clot in my heart. I had to go right to the hospital and start on injection and pills called blood thinners.
I dont know how long I will be on these, but I will go for another MRI in the near future.
The cause of the blood clot is unknown. They are wondering if the port is causing them, so I will have it removed. Not good news for me
Hypereosiniphilic sydrome also causes them, and I will ask my specialist about that next week!
Thats that for now

Some New pics of Joey! He is getting so big!

My port has healed very well.. I will post a pic as soon as I can find the camera! It was used for the first time last week when I was battling another infection. It worked like a charm! The IV antibiotics worked well and as far as I know Im infection free!

I have finally! recieved my port a cath.
Also I went to Hamilton yesterday and It pretty much a yes for the experimental drug I have been trying to get on. I go back in a couple of weeks for some final test. Im so excited that I may be getting some help.

I was sent home from London with not only the Port a Cath, but I still have my PICC line, so bathing and sleeping have been a real challange. Im well wired! heres a couple of pics.