When we went to our monthly dialysis clinic visit, Maci's nephrologist was going to talk to the transplant folks, have a meeting....she said hopefully that Friday. No meeting that Friday or the following Friday or this last Friday. I am going to go out on a limb and say they won't meet this Friday on Good Friday, either.
I am still in limbo. I still know nothing more. I still have no idea JUST how "tall" / long Maci needs to be for transplant. I still have no idea when we will meet with the transplant surgeon again. There is STILL no testing yet because insurance will not pay for donor testing until the patient is put on the transplant list. I STILL do not know if she can be listed as inactive so we can start testing but not be on the list to receive a kidney from a deceased person (as they prefer to have a living donor for her). I STILL KNOW NOTHING! Aggravated is an understatement. Patience would come easier if I knew a plan, if I had info that I was told would be provided!
I am NOT in a good place. I am angry. I am frustrated. I am broke. I still can't get a job because I still don't have nursing care for Maci. The nursing agency I had been working with basically has been COMPLETELY unreliable and became unresponsive to my calls and when they were supposed to be here, just didn't show up. THANKS! Thanks for wasting TEN MONTHS of my time. I have now contacted another company but they have to hire someone.
I am very out done with everything and EVERYONE involved in this transplant process......extremely disappointed. I swear if I knew I wouldn't face the same challenges with starting over in a new state we would MOVE NOW and not even wait until post transplant.
Jackwagons!
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