Wednesday, May 20, 2015

CF Awareness Post Question Day 20

You have had experiences of a volume and magnitude with the health care system that few have. I'm interested in your insights.

As a nurse and a patient, I've experienced both sides of the coin and I'm aware of bad apples, general malaise and the "systemic" characteristics of a system with funding issues.

What I'm most curious about are your experiences. Are there things which healthcare workers unwittingly do or say which aren't helpful? Do you dread your interactions with the medical system? What are you overall impressions?

Being a patient that is in the hospital for extended periods of time on a lot of occasions you learn what you like and dislike.  A lot of the things I don’t like I suck up and deal because it is hospital protocol.  For instance, I use the VEST while inpatient and do not need to see a respiratory therapist for manual chest physiotherapy, though some CF patients do get this while in.  However, they still have to check on me twice a day to be sure I don’t need anything from them.  So each time they come in they listen to my lungs and ask me the same questions.   It’s very monotonous lol.  And annoying!  Especially when some of them come at 8am and you are still in bed.  But they have to do it and it’s what I get for being there for two weeks. 
As far as nursing goes, there are certain nurses that I dread getting and it’s like roulette when I am in.  Will I get her or not?  Some of the day nurses come in at 7:30 and act surprised I am still in bed.  They say things like “oh you’re still sleeping?!?!”  or “I figured you would be up by now!”  Hello it’s only 7:30 am and I have nowhere to go so why would I get up???  Others are very strict about meds etc.  Most nurses give you the day’s supply of enzymes knowing that we are able and willing to give these to ourselves when we eat.  But there are other nurses that insist you page them each time you order food or eat.  It’s annoying for us and I am sure it is annoying for them, though they do ask for it.  Sometimes nurses forget to hook me up to my IVs at the times I am supposed to.  I don’t get mad I just call.  They get busy and forget.  It happens.  I usually only have one or two “bad” nurses each stay, and considering how many I see that is good odds.  Some of the nurses I LOVE and it’s like a holiday when I get them!  A great nurse can really make your stay sooooooo much more “enjoyable.”  And on the flip side, a really shitty one can make you want to go home immediately. 

I don’t dread seeing my doctors at all.  I know that they are they to make me heathier.  The hospital itself I am not a fan of but I am hoping to remedy part of that by switching centers.  Then I can be seen at a different hospital.  My current hospital, I prefer to do a full two weeks in and they prefer me to do it at home (by they I mean the people in charge of the hospital….they tried to move the CF patients to an entirely different hospital because we cost too much money but instead they came to a compromise with the CF clinic where anyone under 35 does inpatient at Children’s and anyone over 35 or over 18 and seen by the transplant team stays in patient at Brigham and women’s).  But financially I cannot do my stays at home and it is a fight each time I go in for me to stay.  That results in my feeling like an unwanted house guest.  So this new hospital is perfectly fine with you being there the two weeks and won’t make me feel like I am unwanted (so I have been told!!!). 

I’ve learned to juggle my life around the healthcare system.  I know that if I have an appointment at 11am I should not schedule anything else before 2pm or later depending on the doctor.  I know that if I am being admitted I will most likely sit in the waiting room for at least an hour and I should bring stuff to occupy my time.  I know that most doctors run late and it isn’t always their fault (sometimes patients ask A LOT of questions and I would rather them answer the questions than make someone feel rushed.  I might be that person one day and would hate it!).  I know there are a lot of faults with the system that need to be changed but they might never get done.  I can’t avoid it so I need to learn to deal with it.

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