Wednesday, August 17, 2011

A little concern would be nice.

**Disclaimer: This post is not a happy positive one. I needed to vent and get out my frustration out from the last couple weeks with concerns about my health. Just thought I'd let ya'll know before you kept reading (:

Back story for today's story:

I've explained how our clinic works a few times, but just in case I'll do it again. So here in Las Vegas there are only 3 pediatric pulmonologist & one of those doctors started the CF clinic. At the time there weren't as many adult CF'ers, it was the only CF clinic within 5 hours of vegas and he had his original practice to run along side that so he searched long & hard to find a doctor that could do the Wednesday clinic appointments for adults. When I first switched over it was weird. She had been doing it for years & years so I didn't think much about it plus I was leaving for school. So even though I didn't care for her much I figured no big deal. Well over the last year I've been having a ton of serious complications with my CF. I see my real CF doctor 1-3 times a month since I moved back home in March and before that I was seeing my doctor in Reno twice a month who talked to my doctor back home. I never once I saw the clinic doctor. Well now that I am back I have to see her for clinic every 2 or 3 months. So when I go in to see her she goes well there are a lot of notes here from Doctor N. (my real doctor) why don't you tell me whats been happening, and I spend the next 10 or 15 mins catching her up on my life.

The past two weeks:

*2 weeks ago I had my clinic. I had been seeing the doctor once a week for a month while on IV's. My lung function went back up to almost my base line and things were great. He decided I didn't need to come in the following week and just wait 3 weeks for my clinic appointment. So of course I met with the doctor & we talked about the last 2 months & the complications. We looked at my PFT's and they had dropped 14% all the way down to the low 30's which is lower then they were when I was admitted to the hospital in Reno at the beginning of March. I was sure I was being admitted & I was making plans in my head for being in the hospital. Well she decided that would be pointless and she thought it was just asthma. I told her I've never dropped this much for just asthma & even though I was having wheezing problems I felt like it was more serious then that. I was also really concerned because school started in 2 and 1/2 weeks & I needed to be better for that. She was still sure it was asthma and some steroids would solve our problem and told me she had no idea what she'd be treating if she started IV's s she wasn't going to do it (in my mind I thought put me in the hospital and run test till you figure it out) but she wasn't gonna hear it and sent me out with prescriptions.

* Today I went back to check up on my PFT's (at the clinic again not my main office). My wheezing was gone and I was breathing easier, but I was still exhausted all the time and losing my breath a lot so I knew I wasn't going to be happy with my numbers. I was right they weren't better they had actually gone down 1% more. Not much but something. Instead of me waiting for the doctor to see my numbers they said they would show her when she was done for the day and let me know what she wants to do. I never heard back from them. I want to be put in hospital. I need to figure out what's wrong so I can get through this semester, there is only a week and a half till school starts. But mostly I am frustrated with the lack of concern from the adult clinic doctor. She doesn't know me. She doesn't know what a complicated history I have always had. I'm also hurt that she didn't listen to me when I was talking about my frustration and disbelief that the steroids wouldn't do the whole job, but I gave her the benefit of the doubt. Sure I haven't been through years of medical school, but I have had MY cf for almost 21 years. I know my body and I knew something was wrong.

I am calling in tomorrow to see what the clinic doctor said. If I don't have a serious answer I am calling my REAL CF doctor and asking him about fitting me in this week. He is so great to me. He listens to all my opinions & concerns and tells me as soon as I am feeling sick to call him and he would squeeze me in so that's what I am doing. I am not okay with not being listened to & I am not okay with taking my 15% drop into the low 30's lightly. I have a lot a head of me and I am going to school this semester. My base line is 48-50% not 33. It scares me to see my numbers this low and it scares me to be out of breathe from just getting ready for the day, but some how my clinic doctor doesn't seem to rushed. When I go in to see my real CF doctor I am going to talk to him about letting me see him for my clinics instead of the adult one. This is the second time I had a big drop in PFT's that she didn't admit me when I wanted to be. The first time I ended up being admitted a few weeks later by my main doctor. I need a doctor to listen to me. I need her to show more concern. I just don't feel like I'm in the best of hands & I'm not okay with that.

Phew, that felt great to get off my chest!

1 comment:

  1. Sometimes Doctors think they are doing the best thing for us by keeping us off IV's unless it's really necessary, but as CF patients I think we all know pretty well when we need either just a burst of steroids or if we need to go into the hospital.

    I would definitely request to see your other CF doctor and ASAP so hopefully you can get on some antibiotics and start feeling better before your semester starts!

    Doctor's don't know everything. They are people just like us, and I believe unless they fully listen to their patients they can't be an effective advocate - so you must be one for yourself!

    I'm on the transplant list now and actually need IV meds ALL the time but before I got to this point. I went into an appointment and my Dr would look at me and say "IV time? or you think you can handle one more week on orals before we go to the IVs".