Well things had to go better today. Though there was some pain for me. It is difficult for me to speak well or for a long time and I spent entirely too much time on the phone today solving this issue. First I had to call my local doctor at 7:15am. Left a message. Got a call back at 8:00am. Explain what I needed, they said they would try to set up an appointment today and would call me back. I waited until 11:00 am then called again, explain the entire situation, again and was told the nurse was working on the appointment and would call me back when it was done. Then I put on my thinking cap and came up with this solution. I can take the infusion through a IV line and I have the stuff I needed for an IV Line. (I save all the leftover supplies I receive and I have a lot) And I have a great friend who is a nurse nearby! Well, that plan fell apart as my friend hasn't started an IV in twenty years! Can you believe he is a nurse? But that was okay but because while were speaking via text, I received a phone call from the Infusion center at the hospital and they wanted to schedule me in for a study of my port at 4:30PM today. So that worked. But then I was told by that nurse when I enquired would I be able to infuse after this treatment (Because that is the entire point of this exercise) She said no, they would need an order from my doctor. So I called my doctor again, again explained everything from scratch and was told they would call me back. They did in 30 minutes and told me they didn't need to write an order, it was contained within the "kit". I said maybe I am slow, but does that mean I will be leaving with the ability to infuse? They said they hoped so. So I called the hospital back, explained everything again (this is when it started to get hard to speak) and was told, they weren't sure! So I said, give up Russ, you will have to hope everything works out. And it did! I went to the hospital, they didn't want to "study" my port before they tried to access it. So you guessed it, they were able to access it. So, no study, I left with a line I can infuse with and all is good. I just finished my first infusion, successfully, so only nine more to go before my epic trip West.
Russ
You would think it would be easier to get the care & support needed, OMG.