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Well transplant just called today and they want MORE things done before they will list him. Now they want him to see an infectious disease specialist but they can’t get him an appointment until the 30th. Also the insurance is still denying the transplant. Hubby is upset and saying he wants to quit and just die.
That is horrible. Please tell him to hang in there. This will all pass and be over and then he can relax. This too will pass.
The problem is now they are worried about his weight loss. They said his protien lvls are too low and need to come back up. If this was an issue then WHY didn’t they tell us? I am at my wits end with these people. I’m starting to wonder if I should be contacting a lawyer since it seems they just want to drag thier feet. I know he doesn’t have long to wait and it just seems they don’t want to list him.
I will NOT write down what I said about insurance companies when I read your post (don’t want Nam to ban me 😉 ) but that really, really stinks. Is anyone in the family a lawyer? It is amazing how the insurance companies can change their mind when threatened with a law suit.
Hang in there. We are here for you.
I’m leaving in 30 minutes to take him to his cf appointment. I’m sure we will not get good news since they had to stop all his meds because his liver is now inflamed. They may admit him to the hospital so I don’t know when I’ll be back online again. I’m going to have a hissy fit with them since they do talk to transplant and the only person I’ve been able to talk to is the receptionist. I’m going to demand answers because none of this is making any sense to me. If he is so bad that they wanted him on the list a month ago WHY are we still pussy footing around with test and doctor visits and not putting him on the list?! OH if only I could drink that bottle of wine in my fridge 😥
That is crap, that is total B.S. (off a show or movie).
Seriously, get a can of whoop a** going. And definately try to get the wheels in motion faster. Hmm, I wonder if you have a family nurse around and can help you that way.
Where, oh where, is Nirvacat? We need to sic her on the doctors and the insurance company….
…unless you are planning on being in the States sometime soon, ski?
I’m sorry to hear about this new development. I hoe they hurry up and things turn out all right. Good luck.
I’m back from the doctor. He lost two pounds and his pulmonary function went down by one point and they still pulled his picc line which I was not happy about. They said they are going to talk to transplant and tell them they need to list him yesterday. They told me to call the end of the week since they plan on getting there way by then. I just told them its getting stupid and the ball needs to start rolling before I lose it.
Edit: since I’m in a ranting mood I’ll share how nasty some people are at the hospital. I had to put my husband in a wheelchair to take him up to clinic and the main part of the hospital since its way to far to walk. They have one dedicated door next to the revolving door that is for WHEELCHAIR use. When I hit the button to open the door it was everyones cue to hurry thru the door almost knocking me over. I had to hit the button twice because people just kept going thru the door and I couldnt’ get my husband thru with the wheelchair. Also we have to take the elevators up to the 7th floor for his appointment. I had to wait for the elevator four times because everyone would hustle past me to get on and there would be no room left for a wheelchair. People are just so RUDE! I hope one day they are in the same situation and realize its not so nice when everyone is out for themselves. I was never brought up this way and I just can’t for the life of me understand how people can be like this.
It is too bad you have to ge thrown back and forth like a ping pong ball. I hope that you can go uphill from here.
purpledoggy wrote:Well transplant just called today and they want MORE things done before they will list him. Now they want him to see an infectious disease specialist but they can’t get him an appointment until the 30th. Also the insurance is still denying the transplant. Hubby is upset and saying he wants to quit and just die.
That last comment is not an option. he’s made it through life this far, he can’t quit now. Remind him he still has a very important person to meet in November, and you would really like him to stick around to get to know that person once he makes his debut.
So quitting is not an option at this time, perhaps in 20+ years, maybe, if you are sick of him by then. (joke)
Anyway, hang in there, I know you will make things happen. Perhaps a brief call to a lawyer and a formal lawyer written letter to your insurance company will help you break the ice with them.
Good luck and keep on chugging, you can do this, I know you can.
Kyrin
ddvm wrote:Where, oh where, is Nirvacat? We need to sic her on the doctors and the insurance company….
…unless you are planning on being in the States sometime soon, ski?I wish. I would love to give those guys what for… after the transplant, of course.
So, he is on the list now?
I cant believe people would rush past you when you had a wheel chair!! I would not be able to resist making them feel like dirt. A few well placed “are you kidding me’s” would have done the trick. I sure as hell would have pushed my wheelchair right on top of them in the elevator. 😕
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