Posted 4/29/2008 5:46 AM (GMT 0)
talk about waiting til the last moment............ Finally got a call back from the coordinator, she said we still had some labs and the transplant psyc to see and that is all we needed before listing, I asked her what kind of labs, in the last 30 days he has had14 vials the first time and 17 vials of blood the second time, she said they needed to test him to make sure he doesnt have HepC ?????? OMFG I liked to have went thru the roof when she said that, I kept my calm tho and asked her what do you mean?? She said "well we need to make sure he doesnt have HepC, that wasnt part of the diagnosis, to make sure it was just cirrhosis. " I was like....... ummmm, ya'll are the ones that told US he had HepC!!! And now you say you dont know??? Our Internal Medicine Dr said he had hep, We werent sure what kind so ya'll did a panel and said he had hep C and NOW you are saying you dont KNOW if he has hepC or not???? Well, she then replied, "oh sorry, I was looking at the wrong thing. We need to check and see what his viral load is." she then said that she needed to make an appointment for the labs and that he still needed to see the psyc and gave me the number to schedule the appointment. I called the psych to make the appointment and the assistant, Connie, said " I let everyone know that the Dr is booked thru the end of June and it will be at least JULY before you can get in for an appointment." I LOST IT! I was in walmart, trying to get groceries for 2 different households separated and loaded on the conveyor belt, write down numbers, having been shopping with an ammonia ladened muddled thinking man that is a control freak from the word go for 3 hours in a packed walmart where everyone is panicking about increasing prices...........Havnt had a smoke and craving one intensely, thinking we only had 1 small hurdle to get over, and that would be accomplished in a week or so..... Only to have this person tell me it will be MID JULY!!!!! before we can even talk with someone. I started on a barely controlled rant, I didnt want ALL of walmart to hear my tirade, I explained that we were trying to get him on the list... etc etc... She asked who his coordinator was and I told her, she said that the coordinator should have told him to make an appointment for the psych eval before they ever started the physical evaluation!! That they knew the Dr was booked almost 2 months out!. By this time I was in tears...... Frustration doesnt even begin to describe my feelings at that moment, then hubby ran into my heel with the darn electric buggy, me still trying to talk coherently and rationally... I just about blew my last cork....The psych asst was very patient and understanding. She asked his MELD, I told her, she asked if they were the last stop in the quest for the listing, I told her yes, explained about the hernia and the ascites build up and the urgency.... that I doubted he would be alive in July to even get listed....She told me to call back tomorrow, she will talk with the Dr and either call me back or I am to call her in the afternoon and see if she can overbook the Dr.
Back to the so called "Coordinator" I asked her couldnt we have the labs done here since we go to the hospital every thursday without fail?? She can fax or call the orders up here and there would be no prob........ She said No, They might have to send out labs or something and she would just rather we get them done down there. I was like so You expect us to drive 87 miles, eating gas at current prices, another 12 bucks for parking and 87 miles back, so that you can draw 4 tubes of blood that can be done here at this hospital just as easily and a whole lot sooner...... Do ya'll need the money for those tubes of blood and testing as bad as we need it to survive and have gas to get down there when needed?????
She is going to schedule his labs for whatever day we have to go see psych.
There never has been a mention of Bk having the interferon treatments. Actually, the only thing the "Coordinator" has discussed with us was when she handed us the packet of papers to fill out then walked out of the room, not telling us what to do with the papers or where to go after that.....
Hubby has said all along DO Not rock the Boat....... SORRY!!! When someone is not doing their job properly, and someone elses life depends on this persons actions....... its time to rock something.
Sorry for the rant, thanks for listening........ Again :)
Therese
OH! btw, ran into a friend I used to work with...... he is going down the same path.... hep c.. blood transfusion years ago.... I emailed him and told him and his wife to come here.... His dr told him.... he had Hep C, He cannot get a transplant, I spent the next 20 minutes standing in the lunchmeat section at walmart telling him dr's, numbers, things to watch for etc.... His family dr didnt give him any meds.......... gave him no hope whatsoever..... and he asked bk what he does to help with the depression he has been fighting...... he had a heart attack last year and has diabetes, insulin dependent.. lost his license to drive trucks or even the school bus.....
The way I figure it, I may be fighting the walls right now.... but at least I can give him and his wife some do's and dont's about getting pushed to the side :) I also gave him my husbands Dr's number, if it wouldnt have been for this Dr I honestly think my hub would be dead by now, this dr actually cares.