A foot and a half of new snow, -20 C. The long winter has arrived. I went to get my chart this morning and I managed to get to Wayne's warm car without having to take a breath.
I got the chart and had a chat with J of The Dr. that left me very disappointed. She gave me the phone number of a respirologist who is starting a new practice in January. That's all folks. She ain't got nothin for me. Not Russell anymore either, back to Mr. McCarten. I am supposed to be grateful and I bloody well am not. I told her, begged her to call Notre Dame for me and explain to curious circumstances, tell them The Dr. was done and ready to send it before he died. For three fucking weeks it sat on the desk!! If any of my messages had been responded to the fucking application would be at Notre Dame!! After twenty calm minutes of questions trying to figure out what help she could get me to I got her to agree to actually pick up a fucking phone and call them. You know, like do something. Tell them The Dr. died with a virtually complete lung transplant application of mine on his desk. Tell them you want to know who to get it to, how to get it to them, get me to the door. That was like pulling teeth. To get her to agree that this made sense and was within her powers was heartbreaking and frustrating. She said she would and then call me. I really suspect that I have had my last conversation with J of The Dr.. I was polite, nice and spoke without cursing.
I have an appointment with The Dr. Too tomorrow morning to drop my chart on her and try to motivate her into making some calls. She will be a challenge as well. She will squirm and wiggle and try to pass the buck to someone else. I know this lady well.
I am writing an email to Dr. P., my cardiologist asking him for his help. I called and left a message for Dr. L., hopefully my new pneumologist. When her receptionist calls I will try to get a call back from Dr. L. before I see her sometime in January. Lung Transplant new Dr. Lung transplant. I want my phone to ring now, today, tomorrow, really soon. I ain't got six weeks to waste. No time to waste.
I am having more trouble than usual breathing today. Stress. I cannot tolerate stress. I don't have stress when I know where I am going. Right now, I am going nowhere, I have to change that, fix it, fix it fast! I do not have time to waste, anymore.
I will settle down. I remember that I can turn the stress off once I am satisfied I did what I could do to help myself, today. Once I write that email to Dr. P. I should feel better.
I have not been well and going somewhat downhill for the last few days. A painful dry cough, unproductive mostly that leaves my trachea burning. Sputum started to look the wrong colour. I decided to initiate my Action Plan. I am on day 3 of 5 of avelox and a prednisone burst of 10 days. I feel better, the bliss side of the prednisone is every ache and pain goes away. The bad side is I have to watch that I don't become angry and hurtful. Roid rage is real my friends.
I do feel lost a bit. I do feel all alone in terms of managing my health. Nicole is a huge help of course. I worry I am kidding myself, that I never really had a chance at a lung transplant. I was so blissful in my own little way last March. I knew where I was going and I really had come to terms with how to live with an incurable and fatal condition, how to be happy. Now I don't know if I should plan for a new life or go back to accepting and enjoying my remaining days. Hell is where I am now. I got to get out of this place. I need to know how this story ends. I am not owed anything by life. All I want is a chance to see the Dr.'s, the thoracic surgeons at Notre Dame. Yes or no, it will not matter. I will know where I am going. I wont be in hell anymore. Please world, I won't ask for anything else. OK?
While vetting my new pneumologist I found this Youtube vid of her dancing at Dancing with the Docs fund raiser last April. Can't wait to meet her. I found her email addy as well at McGill. I shall introduce myself today. Why wait for next month?
http://www.youtube.com/watch?v=lxoZ3fa8nmI
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