Saturday, November 26, 2016

Frustation with Hospital Doctors

Today marks day thirteen in the hospital. I'm torn on how I feel about this whole hospital stay. I do understand the necessity of my being in the hospital this time. There are times I can do IVs at home and manage on my own. Usually that is when I only decreased a little in lung function and we feel confident I can boost my numbers on my own.  But with a drop in lung function from 60% to 40% I know I can not do it on my own and I fully supported my CF doctors decision to admitt me.. (Read about why Orkambi has been rough so far HERE)

Since being admitted on the 14th of November, I have been feeling a little better. No more fevers, coughing/asthma attacks, better energy and mood., but my lung function isn't better. My biggest problem with this hospital stay has been the hospital doctors (not my CF doctors, but the general doctors that are put on my case).

I have had to remind them more than once to wear isolation outfits when they come in (including masks). Here are a few conversations I'd like to share too:

After being admitted:
Doc 1: Are you aware of your condition?
Me: My Cystic Fibrosis. Yes....
Doc 1: How long have you had it?
Me: It's a genetic disease, so since birth....
(My CF Doc took him aside and gave him a tutorial on what CF is and how to handle conversations)

After getting a yeast infection from anitbiotics:
Me: Another doctor started me on Diflucan for my yeast infection, but I think its not enough. They give it to me at 9am and by 7pm I'm misreable and it keeps me up all night.
Doc 2: We can't just give you more medication whenever you want it. There are reasons for our dosing and we cant just give you more pills
Me: I know that, but I'm on a low dose. In the past they have always given me a higher dose, because this happens a lot when I'm on Meropenem
Doc 2: We can't just give you a higher dose because you want it, your kidneys and liver have to work to..
(I cut her off)
Me: I'm not stupid, I know how it works. You haven't even checked to see what dose the doctor has me on. I usually am on 400 mg, they decided to start with 200 mg. Nevermind, I will just wait and talk to my CF doctors and they will fix it for me.
(the other doc in the room, changed the subject and looked at the rude doctor)
*It's an anitfungal, not a narcotic for crying out loud.*

My conversation the past few days with the hospital docs:

Doc: Well, it looks like you will be going home Monday
Me: I thought my CF Doc said a minimum of Monday and would see how my lung function test goes on Sunday
Doc: Well, you have had the standard 2 weeks of IV meds and you are doing well.
Me: I'm doing better, but still get out of breath walking to the cafeteria. My lung function was still 40% last time, I'm not okay with that lung function.
Doc: Well, you aren't on oxygen and you had your 2 weeks of meds. So not much else we can do for you, so you will be discharged on Monday.

I honestly feel like the hospital doctors see me sitting here looking okay (CF is an invisible disease mostly) and think "why the hell is she here." They don't care my lung function is 40% or that I get out of breath. As long as I don't need oxygen they are covered legally to send me home.  They are basically saying, so what if your lung function is 40% and you will never be able to grocery shop or run again. You don't need oxygen so you are healthy enough, especially for a CF patient.

I feel that just because I have CF does NOT mean it is okay for me to drop 20% in lung function in 2 months and it doesn't mean I have to deal with it and get used to this as my new baseline. I'm so angry at the way the hospital doctors are treating me, I can't wait until I see my CF doctors.

I'm  sure the hospital doctors just want to send me home, but I think my CF doctor will veto their decision and keep me here if my lung function test tomorrow is not improved.  While I hate being here, I know I can not do 12 breathing treatments and 4 airways clearances a day. Plus, eat enough to gain my weight back and get the daily exercise needed to bring my lung function up. Especially considering at home I will not have IV antibiotics or steriods to help me along the way.

I think I'm my lung function is not improved tomorrow I really should stay another week. I am NOT ready to admitt defeat with my lung function and i think the doctors should be happy to see a pateint so compliant and willing to do anything to be healthy.

Stay tuned for my next blog post "Up and Downs" of the hospital.


  1. Oh man... Frustration and stress sure doesn't help the healing process. Have you talked with your CF doc about getting a different hospital doctor? Advocate for yourself!

    1. I alwaysdo advocate for myself. The first doctor was just admission doctor. I didnt see him again. The other doctors are part of my "Hospital Care team" legally hospital doctors have to be on a team and all see me. I humor them, they dont get any real say in the health decisions anyway. My CF doc makes all the calls, or I would be worried. LOL