Wednesday, December 8, 2010

Really Effin Frustrated

I had my clinic appointment again yesterday and I left feeling really frustrated and annoyed.  I felt like nothing was accomplished.  My PICC line was pulled and I got some information about a study I am going to do, but other than that, it was almost pointless.

There were a few good points and I should explain those first before I begin my tirade on everything else.  My lung function is back up almost to baseline.  I blew 1.31L, 45%.  My highest is still only 1.45L so I am not too far behind.  That was also a fluke in my opinion, as most of my numbers range from 1.30L - 1.35L.  So technically I am baseline.  Because of my numbers being back to normal, they pulled my PICC.  I am looking forward to my first PICC free shower in a little while!  I am also no longer culturing Steno Malt.  My last one was free of that, though I did culture Class B strep.  And the one before that I cultured Aspergillus (spelling??).  Both along with my normal PA.

Now for all the annoying, why I am so frustrated things.

First was the results of my sleep study.  I didn't de-sat below 89%.  This means that my insurance will most likely refuse to pay for my O2 concentrator.  She said that I could probably use 1L at night and it wouldn't hurt me, but the chances of insurance allowing me to keep it are slim.  Even though I qualify for O2 with exercise, needing 2L.  She also said that when I am feeling run down and sick I will definitely need O2 with sleep.  Great, thanks, this is why I didn't want to do the study while on IVs and HEALTHY!  Now I will have to fight my O2 company and insurance to have them pay for the concentrator.  Just another headache that could have been avoided.  I have been using O2 for over 2 years now and I sleep like shit when I don't use it.   My blood gasses are all normal so I don't see an issue of using it.

My second cause for annoyance is that I am STILL running night time fevers. Now I know a little higher temperature at night can be normal.  But I don't see how 99.6 and 99.8 are normal.  IT'S NOT NORMAL FOR ME!  I run low, always have.  Even at night I would be around 97-98 tops.  So to jump 2 degrees just isn't right.  Maybe I am over reacting I don't know, but I want an answer and she didn't seem to have one.  Her response - OK.

My third and final issue is this wretched pain I am having across my chest.  Sometimes it is centered directly on my sternum and shoots outward when I inhale.  Other times it will go deep into my chest until it feels like it is going to shoot out my back.  The pain was so bad on Monday night I was almost in tears when I went to bed.  Motrin is helping it thankfully.  When I asked about it she asked if I was doing any push-ups or heavy lifting.  I said definitely not with a PICC in.  I mentioned being out in the cold and walking a little bit and she replied, "hmmm maybe".  Gee thanks.

I left totally annoyed, totally frustrated and wanting nothing more than to see Dr. H. again.  He knows me, he knows what is normal for me, he knows that this all would warrant some type of response other than "OK".  For this reason I am considering setting up an appointment while I am in Philly between Christmas and New Year's.  I'll have to pay out of pocket for it, but I don't mind.  I want to see him and get his opinion.

I know I need to be more assertive and demand answers but that has never been me.  I hate rocking the boat.    However, if I don't start I might not like what I have to deal with.


  1. I had a similar experience with pain in the chest... it needed up being a cartilage sternum issue. Heat... rest and time seems to help it get better. Hope yours gets better soon.

  2. Geez ... so sorry to hear about the crappy appointment and the future insurance fight. Glad to hear your numbers are good though!

  3. I think that you sure need to rock the boat to get answers. Did you insurance company ask for you to do the sleep study? I thought that any desatting below like 95 could warrant overnight 02. Ugh. I still have my concentrator . . .

    For your pain, is there any way at all that it is really bad heartburn? A quick test would be to take some TUMS when it gets really bad and see if it gets even a little better.

    The fevers- new birth control?

    ok, that is all dr. peters knows.

    Uluer for Life,

  4. LOL CG

    Definitely NOT heartburn. I take Prevacid anyway and its more a bone pain type thing, like when our throat gets really sore and stiff.

    BC is a possibility for the fevers....

    Insurance did not ask for O2 study...Dr D did.

  5. This is going to be much help but I get that same pain too. Or I am assuming it's the same. My doctor told me that it was the muscles surround the lungs and ribs. However, that's about all he said :/ For me it was happening a few months ago and I was worried it was related to my heart issues, then it went away on it's own. Now it's back again but usually only at night or in the mornings when my lungs feel the tightest and I am coughing up more junk.

    Like I said that really isn't going to help, sorry. I hope you get more answers next time or soon. I hate when my questions are just shrugged of or left unanswered.

    Love ya Cys!

  6. Hi Amy, so sorry you feel like you didn't get good answers to your issues. It sucks when you have to "train" a doc that is new to you to your body, very frustrating at times.
    As far as your chest, maybe costochondritis, it sounds like it could be that. Motrin is the drug of choice for that, and being that you feel relief with it, that is good :) heat, warm showers also help. I have had this a few times, especially when I cough so much. The cartilage gets inflammed or stretched from the coughing from what my doc has told me, maybe that is what happened to you?
    I hope you are able to keep your concentrator, you still need O2 for exercise and when you are sick obviously, but insurances can suck. My doc has had to fudge a few things a couple of times so that my care is continuous as far as O2 and even meds are concerned.
    Hang in there, I hope you can see your doc in Philly;
    Hugs, Jenn (JustDucky:)