It is an honor that you are here, Thank you!

Sunday, February 1, 2009

Toronto or Bust.

Well, it's almost been a week here in the big city.

Most of you know the story about my black book with doctors. Well after the second day I have another one added to my list. Oh don't start with me people, it's nothing I did this time, it's all about bedside manner, and whether or not I want to talk to the individual.

I admit I am a little overwhelmed, OK a lot overwhelmed. A lot has happened while I was here. It's a big city, and I am still trying to get used to the way things are run here. New Clinic, new Doctors, new nurses, new hospital, new everything.

When I am in a new place, I like to be treated with a little bit of respect and competency. But when you are introduced to someone, who thinks that you are a liar, and that what you are telling them isn't what they heard, you kin of feel like everything you were told is a bold faced lie.

When I first was admitted in Ottawa, the Doctor, Ena, my Mother and myself were under the impression that when I got a bed in Toronto, I would be here until I got new lungs, well apparently that's not the case. They want me here, and they want me to leave. I can't go back to Cornwall, but I can't go to Ottawa either. They treat people here with the intention of going home.

I clearly recall the conversation with the Doctor, as do the rest of the people who were in the meeting, and there were 6 of us, so how can 6 people hear the same things, when they weren't told that in the first place.

I am getting off topic, anyhow... I was told otherwise rather quickly when I got to Toronto. They want to get me somewhat healthy to live in the outside world, and then get transplant, and so on. The Doctor who I will call "DOOM" was not very heart warming, understanding or caring in the least. She told me that, when I am well enough to leave they will discharge me. As I explained to her that the surgeon I was corresponding with on a regular basis, has told us that I will stay in Ottawa until a bed is available in Toronto, and I will remain in hospital until new lungs are available. Doom, said that she was never told this, and that, this isn't how things are done.

Needless to say the next day, she came back into the room with the fellow for the clinic, and made her mark in my black book. She was telling me that the medication I was on was the Homeopathic version of what I should have been on in the first place, so they have increased the doses to see what happens. At this point I am on Meropenum and Pip/Taz by IV, and CIPRO orally. Also that my Iron was low as well as my Hemoglobin. Sure fine, do whatever you need to do.

Now remember I have only been here maybe 12 hours when she is discussing this with me. Doom later then says to me, that I cold be discharged within 2 weeks, and that I need to get my accommodation in gear. Now hold back the train, because we have a stow away. DISCHARGE? WHAT? No one ever siad anything about discharge. Doom then persists to tell me that she spoke with the CF Practitioner and the conversation I had with the Surgeon, The Transplant Coordinator and the Social worker, didn't happen, and no one ever said anything about me staying in the hospital. WELL I NEVER!

According to DOOM in her words "I saw two patients in clinic yesterday, who are far sicker than you are and they aren't on the transplant list." and this is my fault because? If they are sicker than me, then maybe they should be on the list. She also had to mention that, "there are people in the GTA who are on the list, and are living at home." Right they are living AT HOME. I am 5 and a half hours away from HOME, and she is making me feel as though I am taking up a bed for a local who is sick. So sorry, then you should have let me stay in Ottawa, where I was close to my family.

While she is talking, I interrupted her, asking her to stop talking about this, I was getting different stories from different people, and I wanted to hear the right thing. Bo one was saying the same thing, my Doctor was saying one thing, Ena saying the same, the Nurse Coordinator for the transplant team is saying one thing to us, and recanting, the stress is unbelievable at this point. My brain is taking a day off. I can't handle it anymore.

I am in a strange place, new, faces, people, stories. Nothing is being done, but everything is being said. As I tell her twice to STOP talking about it, and to leave my room, she didn't. Finally after being rude, she decides to leave. Now she's going to mark on my chart that I am a difficult patient. All was well till she walked into the room, and opened her mouth. Finally she leaves, and I sit on the bed, by myself and cry. How can someone be so heartless, and have no bedside manner.

At this point, I want to jump out of the window, flag down a Cop and ask him to take me to the airport, sneak on a plane, and fly back to Ottawa. I DON'T WANT TO BE HERE ANYMORE!

When I told mom the story she was none to impressed. Mom came in on the Tuesday, and we met with the CF Practitioner here, Dr. Tullis, awesome lady. It was her, Doom, and the Fellowship student person Nancy.

When Dr. Tullis explained to us what was happening, we still couldn't understand what the urgent urgency was to get us up here. I then told her, while looking at Doom, that I didn't appreciate that she told me there were patients who were sicker than I was, who aren't on the transplant list, and boldly said, that's not my fault, that has nothing to do with me, and that she made me feel as though I was taking up space. She apologized in a way and said she was wrong for doing that, then I mention that I had asked her to leave and she didn't and kept talking and talking. I said, what part of STOP and LEAVE don't you understand?

Anyhow, until further notice I am still in the hospital, so I will keep you all posted as to the new events that happen.

Cheers Friends
Ali