I have learned so much since I have been through my 57 days in hospital and the re-hab process. One of the big surprises for me was how active I must be in being an advocate for my own personal medical decisions. I must be alert about medical orders of decisions which might not make any sense. I must be able to understand the situation and understand how it came about and above all not be afraid to stand up regarding ANY medical orders.
I am now moving dialysis and have done probably between 30 and 40 dialysis 'reps.' When I started the process was set up with a system of portal connections set up in my neck and providing the hook=up so that I might provide what was needed. A procedure was set up to put the ports in my neck and through this system the program was moving.
However this neck system is prone to infection and I am in a system with no immune system. There is another program of portals using what is called a fistula. This is when a vein and artery are cross connected to build a really strong system to maintain the vigors of dialysis.
My first fistula was done in August and I named him Freddie. I was given exercises to help develop Freddie but unfortunately Freddie did not work really well so a second operation was set up for a second fistula. My new fistula was higher up in the arm and his name is Frankie. Since Freddie had failed, Frankie stepped in to take on the role. Frankie is from the Bronx and he is full of swagger. He is committed to provide a strong system for future portals. I was scheduled to have Frankie reviewed by a physician's assistant. However the day I was scheduled I was admitted to the hospital. My dialysis doctor had only known that the fistula was due to be looked at. So he ordered follow-up use of fistula scheduled for some ten weeks later.
I went to dialysis last week and was suddenly informed they were going to use the fistula as my portal - even though no one has looked at it since December. Included was two months in the hospital. I know that my fistula is still some 8+ weeks out; it is not mature. But there were doctor''s orders so the facility was moving toward using the fistula.
I became very involved in the process and refused to change the connection portals withouth a specific review of the fistula. I now am still using the old method of connection and I have an appointment this coming Friday to look at the fistula and set up a possible appointment to review. This is the point in time when I want to be sure I am involved in the process.
I had a close friend who went through stem cell procedures and his cancer. It was an involved process; his wife set up an Excel matrix and at least twice corrected nurses prior to using the wrong chemo drug. Advocates!
Be active and be involved. Do not be afraid to ask any questions. This is your health and your body and your journey. This is the period of time when we settle back and have people do things to us. We understand what is going on and continue to ask questions.
I have been taught this through watching my wife work the system. She is steady asking questions to make sure she knows what is happening next and has taught me to start doing the same thing.
What if we did this around how we show up in life? This is our life; it is our job to know what is going on and knowing what to do next. Thanks Rachel for what you've taught me about taking care of myself and asking questions. You have taught me about sacred space........
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