Wednesday, June 17, 2009

Frustrated

The CT Scan didn't show anything, so basically there is nothing that can be done right now.  Of course, I missed the full discussion with the doctor (it always happens!) but talked to him briefly and then got the recap from Gess and his dad.  Good news, Gess is coming home tonight. Bad news...this visit seemed like an extraordinary waste of time.  

Gess's CF doctor is noticeably frustrated with all of this too and is going to consult with some interventional radiologists outside of the hospital.  

Gess asked about transplant and whether he should be evaluated for that and the doctor said that his numbers, even with bleeding, are not low enough for that.  I am sure that we will talk about this again at our next clinic appointment.

The "rules" for when Gess comes into the hospital for bleeding have changed now.  Now, he only comes in if the bleeding doesn't stop or if it is accompanied by other symptoms and/or signs of a CF exacerbation.   Also, even if there is another huge bleed that doesn't stop, it is unclear what, if anything, they will even be able to do.  I guess resecting part of the lung is an option, but not a good one. 

So, we are all really frustrated.  Gess is visibly upset about it and mentioned that he "knows that [he] is going to bled out, so [he'd] better get all of this stuff in order."  I hate when he talks like that because it sounds like "giving up."  I am pissed.  I hate that he is hurting and probably scared and worried and there is nothing that I can do.  I am frustrated that there is "nothing" that can be done. While part of me thinks that there has to be something, the other part of me thinks that there might not be.  We are going to see about consulting with other doctors, etc., but that will probably take a bit of time, etc.

I am also pissed that I feel like we have to put life on hold now since it will only be a matter of time before he starts to bleed again.  We have talked about a cruise, for example, but is that a good idea when he might start bleeding there?  Ughhhh....so frustrating!  I hate this fucking disease!

7 comments:

CysticCysterAmy said...

:(

(((HUGS)))

RunSickboyRun.com said...

Did you mention getting him embolized? How much blood is he coughing up?

Ronnie

Jess said...

I'm so sorry you guys didn't get any answers :( Thinking of you both.

Lisa said...

Ronnie--

They tried to do an embolization last week but they cannot locate the source of the bleeding, so they can't embolize. That is the frustration point we are out now. Knowing that there is bleeding, but not having options to stop it.

The amount depends. On Sunday he coughed up over a cup total (1/4 cup, then 3/4 cup, and then another 1/4 or so after we got to the ER).

jordysmom said...

I'm just so sorry. :( ((((((((hugs)))))))))

Stacey

Leena said...

prayers and hugs always.

Tina said...

Man wish there was a way to get around this whole mess but I guess the only way is right through it. I'm thinking of you both and sending out some good vibes. Take Care Lisa.