So yesterday everything was moving forward for me to get my chemo in afternoon. No more fever, got my central line, confirmed it was in the right place. now all i had to wait on was getting an CT Scan of my chest to make sure there were no problems, since I had been having some chest pain over the last few days. I was convinced I just pulled a ribcage muscle... but i was slightly mistaken... a substantial amount of fluid has built up around my heart and is most definitely causing the pain.
I am gonna be little more judicious in what I say next, because you never know who is reading this, but there was a bit of 'mismanagement' on who delivers the results and the treatment options to you. The first person to come was physician assistant for a cardiac surgeon to come in explain the surgical procedure that want to do permanently remedy the situation. Excuse me what? will someone please explain to me what exactly the situation is? It was clear that this team was totally unaware of my history and the intricacies of my diagnosis. I am surgeon, I have knife, lets cut...
Needless to say my mom was not was pleased, and was adamant to me that I should do nothing at the moment. We need to talk to my doc who familiar with ins and outs of my case and this RARE disease... What we think that this a recurrence of the ATRA syndrome that landed me in the ICU last go around. That is our hunch... not and official diagnosis. But we are treating it the same way we treated last time with a lot of success...
I just want to be clear that I am doing fine, I am still in my regular hospital room, I am stable, but watched very closely -i have to wear a portable EKG at all times, which is about the size of a 1980's cell phone- my vital signs are good, my breathing is good. The chest pain sucks, but they gave me oxycodone for that and it helps out a lot, i can breathe deeper, sleep on my side with no pain, and yes, the fact that it takes an edge off does help out too.
So we will see what today brings... i mean these are without a doubt some anxious moments, but I been through those before... you just take em one step at a time and move forward from there... Hopefully this cardiac issue gets resolved in the next few days, and in a few days and we can get started with round 2 of chemo. This means a longer hospital stay than planned... but hey at least there is a reason for that now.
Sooo to wrap up the other days airplane analogy... after sitting on the runway for hours waiting to take off... you get clearance, barrel down the runway and slows down... pilot comes on intercom... sorry folks mechanical trouble... back to the gate to fix em... you are annoyed, frustrated, but sure as shit happy you are not flying in a plane that has mechanical problems...
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