Frustrating

Okay, so we all know that when you take out kidneys, you go into failure.....so why the heck can't people get "approval" for the necessary meds, transplant, blood donation, medicare and such. I asked and asked and asked and was always told "it's not time yet."

The first omg was when the Red Cross lady called the day prior to the deadline for people to donate. Because clearly it needed to be prepared earlier as I kept asking. With little time, I was the only one able to donate. (The lady told Sean that the St. Louis people had NO time to donate and get it here for the surgery.)

Today was another of those days.....I was told by Mary Schaefer the social worker at Vandi that the application process would be done in the hospital. I asked several times and they said that is done at the dialysis center. When we asked the dialysis center the Wed. before Thanksgiving the lady doing the intake paperwork said "this is the form." Well of course it wasn't the form! We kept asking. So today a nice lady got on the phone to discuss it with me. She is checking to see about getting it done and will call me back. The issue I have with this is that we are on such a limited time, why couldn't they do it during pre-op or at the hospital, like I asked. We have a maximum that insurance will pay and it would be great to take some load off of that total. With the current bills posting, it looks like we might make that total prior to transplant!

Also, today, the Vandi social worker, Mary called to say she needs to meet with us again b/c it's been over 7 months since she met with us. Funny enough....she has done little for us and have no idea what her purpose is. So....she asked Sean three questions on the phone and we are done! Good!!!

A call from our insurance came in today about "following Sean's case." It's a catch 22 she said, b/c in order to precertify him for the transplant, this has to be approved by us. So yes I agreed. I answered some questions about his history. She said she is finishing the report and will send me a copy of it. This too seems like it could have been done prior to now. (The paperwork was not submitted to insurance until this past Monday from the case worker-Margo.) Until pre-approval saying it's medically necessary, you just think oh my. Sean's kidneys were failing, but still working all be it he was in discomfort. I would rest easier if this was done prior to removing the somewhat functioning kidneys. A lifetime of dialysis was not in the plans.

The dialysis center today wouldn't let me come back to set him up today. This pissed me off because this past Saturday the front office worker had a child with her that was not only in the office but moving around the center in the back for much of the time we were there! So I have to ask myself how that is possible. Then they let another man back with his wife. What is the deal? What is good for one is good for all.

All in all today the general mood was irritation! I did find nice people in the midst of it all, but it is still frustrating. I don't think that these people understand the emotional load this takes and how much easier planning ahead would be for the families in the middle of all of this. I had time and energy to handle this crap prior to running every aspect of the house. Now I have no time or energy to deal with this stuff.