Lung Jail-Day 2

I am not sure where to start. My disappointment with the day is pretty deep and I am trying to find some sort of lesson I a supposed to learn or attitude I am supposed to change. I am filled with anger, fear, sadness and mostly just pure 100% frustration. Its a hard thing to put in words. I even thought maybe I need to sleep on how I feel before I blog, so as not to say/print something I regret, but here I am. OK the day unfolds like this:

We arrive on time at Rehab Services, Walter Mackenzie Centre U of A. There is a line up to check in. I get through and sent straight back to the “gym”. Get to said gym and they have started the class for the transplant patients Class of FEB 2018 without waiting for me. I wasn’t late. They had a line up to check in. This lateness made the coordinator “Laquisha” (will not use real names) kinda perturbed. I sat down in the group and we all proceeded to follow directions and fill out 3 personality tests and happy level questionnaires. What I found stupid about this is, it is something we could have done at home and the fact that they handed out these pathetic, over copied, hard to read, crookedly photocopied questionnaires was shocking. My first impression is, “seriously? you guys cannot get an admin to re-type these quizzes, that were photocopied from a book at some psych text in 1989, so that it looked professional?” It was really bad. The next baffling issue for me was that there was another CFer in the program. I wasn’t even warned. They couldn’t even give me the courtesy to tell me that another CFer was going to be in this class. I was told that they try NOT to schedule 2 CFers together so I was gobsmacked. CFers are NEVER to be in the same room for any reason due to the risk of cross infecting eachother which could wreak havoc on either one of us. Lung transplant people don’t seem to agree. This set me off instantly. After I make my frustration known I am told that “we keep you apart, you wear a mask and that’s that” NO!,THATS NOT THAT.

As I am seething I continue on with our next to-do. Take a blood pressure and O2 sat and then do a 6 minute walk test and repeat blood pressure and O2 sat. I do this and at the final reading I notice that Sally has not even wiped the O2 sat monitor that went on every persons finger in our class. I’m sorry, what happened to the infection protocols you just talked about? Again I’m gobsmacked.

Next we make our way over to clinic which is in a completely different building across the street. Get up to the clinic,check in and wait for 20 minutes for anyone to come talk to us. We later found out that the clinic was in a bit of a tizzy because a lung transplant was happening at the same time. Ok cool. Then the nurse coordinator “Sally” comes in and interviews me. I tell her my concerns and she again says- sorry thats just the way it is. Mother trucker does no one see the issue here? I ask if there is a possibility that me and the other CF could be in the physio “gym” at different times. She says you could ask. I’m thinking NO!, you as the coordinator should have new protocols in place for when 2 CFers have to spend close quarters together for a month!!!! Again, jaw is on the floor. 30 minutes later I finally get one of the respirologists come in and interview me. I again express my concerns and he again dismisses them. So, if they aren’t acting in my best interests, where does that leave me? At this point Mom and I leave completely defeated, disappointed and sad. I haven’t even gotten to the education classes we are supposed to go to which are, on a good day- ridiculous. This entire month is going to be the biggest waste of my life and also the riskiest one. I have decided that I will once again bring this up to someone tomorrow and see what can be done. If something can not be done I will not put myself in situations that make me feel unsafe. Kick me out if you have to. Lord forbid I miss the class about sleep hygiene??!!!FFS!

To say it was a trying day is a huge understatement. The bright light of my day was that I found an amazing off leash for Cali just minutes from the condo.

I am trying to figure out how to mentally work through this without turning into a crazy person. I am asking God for some direction in this as I always listen to Him and follow my gut instinct and if He/its telling me this is wrong then I am going to have to make it right.

When I looked at the class schedule I thought there would be some one on one with a psychiatrist on how to deal with death and mortality and in turn I see a group class on “wellness through relaxation”, yeah thats not even close. There is one class that I feel will be beneficial and that’s the tour of the ICU. FYI all the classes are group classes.

We are done at 11 am on mon-Thursdays and 9:30 am on Fridays with the rest of the time to do sweet eff all. Again a complete waste of my life and that of my support person. I honestly expected way more and was completely let down. Yes I set high standards and expect high standards. I work hard to be a successful, useful human being and a super compliant and well trained patient so I guess I expected too much from this experience. Let’s hope God takes the wheel on this one.

Over and out.


One Comment

  1. Jan

    So sorry your put in this situation Nicki. I thought there’d be much more to it and it’s terrible your health is being put at risk. Wear that mask and keep away from anyone you think could infect you! What time do you start in the morning? Glad you have Kelly to keep you busy and share her love. Your mom too! Jan

    Liked by 1 person

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