Hi everyone, I've just gotten done reading all the great postings while Jim and I were in New York city for 3 days. I have a Iphone, so I can keep up on everything and anything going on. Anyway Jim is doing great and we had a long talk with the new love of my life, Dr. Amin...:) can't help it. so he says that Jim is doing great, this was his two week checkup post surgery. Everything looks like it should, according to Dr. Amin, didn't look good to me, but what do I know, has anyone ever looked at a vocal cord that has been burned by a laser? That bright, red, sore looking cancer is perfectly white now, due to the burning process.

Dr. Amin seemed to have some time on his hands today and was very talkative, relaxed and encouraging. After I thought that he and Jim were finalizing their conversation, I said to him, "Is is possible for me to ask you a totally unrelated question? And he said of course, Norma, go for it. He also wanted to know where my beauitful daughter Terri was! hummm.... So I told him I had PKD and wondered if he was familiar with it or if he had any knowledge of doctor's in the field? Well, guess what he said to me. He said that he was not up to speed on it, being an ENT guy and all that, but that he would find one of the best doctor's in the field for me to see and even left the room to tell his secretary to look up some names that came to mind!! I was really embarrassed as this is totally not me to ask something of anyone, let alone in this situation, but he seemed so relaxed and chatty today, I guess I just took a leap of faith!

anyway, he has a call into one of his friends that is a kidney doctor and is going to find out what he can about research doc's in PKD and he is going to call me when he gets some substantial information for me. Can anyone believe that? I know that I am too old for a transplant and I know that there are no meds that are going to cure me, I know all of that, but it's just a great feeling to know that there might be something else out there for me, other than sitting here wasting away waiting for my kidneys to fail! I'am getting tired and a little depressed more than a little of the time. I have that little tickle in my chest, that happiness tickle you know? anyway, he took down all my labs, which I know by heart, LOL, that I have PKD type II and everything else he could think of. Has anyone ever run into a doctor so wonderful in their lives, generous and loving? Whow, I sure haven't, but I think I have now. I know, I know, I know, but who knows what they might know at a research hospital that I don't know? Or more than likely, my current kidney doc, for sure doesn't know! He probably doesn't even know that I have PKD! BTW, Dr. Amin is considered to be one of the top 10 ENT doc's in the US and I just happen to run into him one night on the internet, hard to believe but true! Now he's not only saving my husbands life, he is going to try and help me! What a guy, huh?

Sorry, I didn't mean to monopolize the conversation Helen and I sure hope you are feeling better today, keep me posted ok? I just have that little funny bug in my chest and had to tell the most important people that would understand, in my life! I don't know anything about transplants at all, but I sure am learning, listening to you guys talk, so ultimately between you, Ruth and Lindsay, I am becoming more transplant literate, not for myself, just for my general knowledge. I would not consider a transplant at my age, so don't start on me, ya hear! I can't help but wonder what would have happened to my dear husband if I had taken the local doctor's word for his prognosis? Now, I'am wondering about myself and the local, yocal kidney doctor that I have from this armpit part of NY state!

BTW, this is all Ruth's fault to begin with. She is one one that planted this idea in my head, only it wasn't with NYU, but it's a start and in the right city!

LOVE TO ALL!!!
Norma...