Bless you.
This is a long story.
Well we left the hotel at 7:30 Az time. 6:30 our time .,I am not a morning person. The drive is about 5 minutes from the hotel so we left very early to make sure we were not late. All the paper work said ( don't be late or we might have to reschedule). We did not want that. As we got going we ran into a MAJOR traffic jam..........I thought everyone here was retired????????
It was a very bad accident. Looked like it could have been fatal.( prayed for those involved ) I could see the mayo clinic, but it still took us until 8:30 to get there. We called them while we were slowed down once again as there was a 4 car fender bender on the bypass that they sent us on to get around the wreck . I felt like getting out and running through the little piece of desert to get there. Snakes and cactus kept me in the car.
everyone was late . Thank God.
I had my blood draw and was waiting in the waiting room and the gal in charge of the drug study came out and said they had cancelled the CT scan. They were having a problem with my insurance paying for it. That was suppose to be figured out 2 weeks ago. My insurance had just payed for one about 3-4 weeks ago. The drug trial co is suppose to pick up anything my insurance did not pay. WHAT is the problem. They asked me to go to another waiting room. I told the gal we had traveled about half way across the U.S and paid 1500 dollars that if they did not get it figured out that I would not be making the trip back. She came back about 1/2 hour later and said it was all figured out. Needless to say I was very frazzled and crying. I had my CT scan. My Echo on my heart then meet with 2 different Doctors. We did get lunch around 12:30 this was after fasting and no coffee. I will admit I had to keep working on the water works the rest of our visit. Dan cried a few times with me. We left and went and got a ice cream and was told that the area we are staying in they just found arsenic in the water. I came back and took a nap. Dan went for a walk and came back with bottled water. Ya it was a day. We go back tomorrow at 9am I will get a blood draw get my meds and 3 hours later another blood draw. I had a blood draw today then got a IV. I must say that their CT scan drink tasted like a pretty good piña colida.
Thank God tomorrow is a new day.
The new day was not so great. We woke rested and then started a confusing day allover again. I had my blood draw and then the head of the trial and the financial off came and said that that they needed to talk to Dan and I. We moved off to the side and they told us once again that our insurance was not wanting to pay for the standard of care that they had said that they would. IN looking into it a bit more. The drug study was wanting my Insurance company to pay for way more than standard of care. When we went down there it was because they had worked it all out with my insurance company and the drug maker was going to pick up the tab on everything not covered. This was not true. They were only going to cover the drug. Wish we had know this much sooner. Like several thousand dollars ago. They were trying to get it figured out. Dan and I waited from 9:30 to 1 and they called us and said that they had it all worked out that I needed to come up and take my first dose. We did this and then My Dr there wanted to talk to me off the record!!
She said that she had heard that our insurance was not going to pay for anything to do with the drug trial. I explained all that we had been through. Tears of frustration rolling down my face. She went on to explain that if I had any side effects and ended up in the hospital that I would be on the hook for that bill and she thought they could be from $100,000 to 2 million very quickly. I told her we could not take that financial risk. ( I had talked to my insurance company and they acted like they would pay for this stuff. I am not a insurance expert so I was going with that they would not)
We left after discussing a different treatment that I could have here in Salem. We had been gone about 1/2 a hour. Just enough time to really get a grip on the situation and feel good about heading home with out starting the treatments. When my phone rang. It was the financial office stating that they had worked it out with my insurance company and that they were willing to pay for everything.
Dan and I were both numb..... WHAT????????? she was saying come back and get the drugs. Dan said that he would turn right around and go back all I had to do was say the word. I could not.
I had told her I would call her back. I could not do that either. We went and ate 1/2 a dozen donuts and said lets go home.
This whole thing gave me so much peace about the care I had been getting in Salem.
She had said the same thing as the DR from the Mayo clinic and I had never had the problems. I felt like I could go every 3 weeks and get the run around each time. I would start feeling sick and have to do that all day flights and hotels and rental cars and the run around again. It then sounded very overwhelming. Staying in Salem sounds so much more peaceful. Near my home, my family and my support system.
It was a hard lesson to learn, but I believe it was to bring me back to Salem and know beyond a shadow of a doubt that this was where I was suppose to be for my treatments.
I will keep in contact with the Dr from the mayo clinic. I will probably go in about 6 months and see her. Just not ready to do it right away.
I meet with DR Tiffany today at 2:30 to go over my new treatment. I am so prepared to do this. I guess as prepared as one can be.
I think it is a IV infusion , and all that comes along with that . Yes I should be bald again. It is easy as long as Dan keeps telling me how beautiful I am without hair.
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