Tuesday, July 03, 2007

Been very ill Update

very frustrated.
I had a lover biopsy when I had my gall bladder out a couple weeks ago.. The bx has been back for over a week and I keep getting a bunch of BS from the DRs offices.. First I called to find out my results and they had a very uninformative resident call me who wouldn't give me much info except
we'd like to have you go to the liver transplant center and see them.
I asked very specifically about different illness, diseases cancer, etc. he wouldn't say no negative or positive??? well why not?

So I hang up and call the center for an appointment and they said I'd be lucky to get in by Oct. Ok no problem

Then minutes later they call me and said the DR decided to open some time for you in July can you come up then?? well yeah!! I kinda need my liver.

Then a couple days ago the surgeons office calls me back to change my follow up appointment and ask about setting up a date for 5 pieces of my liver to be taken from various areas to confirm diagnosis?? WHAT?? What diagnosis? oh not sure until we can confirm the extent of the damage??? What diagnosis and damage??
Why and what can they be leaving out.. I refused to set up any more surgeries, treatments or anything until someone tells me what this fishing expedition is all about and what they want to confirm and see what??

I thought I had some rights to my care?
and before any tells me to go elsewhere.. I am going to see the head of the liver center transplant surgeon in Boston.. worlds renown and actually all my regular DRs and specialists are in the same hospitals.....but right now I'm not feeling very confident and my recovering hasn't gone all that well so far. Already been back in the hospital over night over the weekend... Not fun at all!
Right now the DRs is currently keeping on morphine the end of the week will be 3 weeks... I know this isn't normal..continued low grade temps.. I keep being told I'm having a gall bladder attack now?? They took the darn thing out??
Just so nauseated, ill, a lump in my throat that wont' go away! errrr! So very frustrated

Am going to have a busy month especially the next couple weeks also some appointments with my son too. He may have to come off his meds, it's making him a very angry mean kid.. We're looking into a service dog for him with the epilepsy & behavior issues but they want $9500 fee...plus we have to go to training for a couple weeks... which is to be expected but still.. Fundraising for that kind of money for one person isn't easy and still keep up with other stuff....Way behind of medical payments...Just trying to stay a float with medicines and living expenses...I spoke with the school and the principal is going to hire someone for him to stay with in school, classes and stuff starting September. So glad the school is working with us regarding him being in a regular school and at the same time trying not to label him.... One less thing off my mind for the moment
Now trying to juggle appointments in order of importance?? Kids first but I need my liver too....hmmmm errrrr!
Haver had a few short moments to spin a little makes me feel a little better & relax a bit...phewwww! Have to have some fiber in my life right?! LOL


bockstark.knits said...

Ooooh, hugs!

Sarah HB said...

That is CRAZY that they want to set up appts but won't tell you the diagnosis!

Gosh, I hope they are just fishing.


cpurl17 said...

My heart goes out to you--feeling sick and having to deal with medical bureaucracy.

Kristina said...

I want to cry after reading all of that. No one should have so much placed on them at one time (or really, even over a lifetime). I hope that things are not the worst-case with your liver. As you mentioned, you NEED your live.

I'm glad the school is working with you without you having to go through the hassle of fighting them for it. You don't need that right now.

Good luck. You and your family are in my thoughts and prayers.

Sorka said...

Yikes.. I will be preying for you all!

Anonymous said...

so sorry to hear of your health issues--hugs to you and family -jane

omly said...

*hugs* Many happy thoughts coming your way. If you need any time to vent or just hang and relax while you are in the Boston area, let me know.

Annie said...

Oh, Lord. Hang in there. I am thinking of you!