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The Harsh Reality…Doc Officially Changed My Asthma Level

Had a check-up with my allergist today. We went over a bunch of stuff and he had me do spirometry. Funny, I was at 103% of predicted and still could tell things were a little tight. My best was 108% previously. And it set off a coughing fit! 

He was mostly happy with things and didn't switch anything up. We went over some particulars and refined my plan. 

Then as he was enterting things into the computer, he says, "well I guess I have to change your diagnosis! You definitely aren't mild intermittent anymore." Ouch! Harsh reality! So now I'm officially listed as moderate persistent asthma. He said I'm really mild persistent, but the severity of my exacerbations puts me at moderate. 

I know I haven't been mild intermittent for the past 2 years or so, but it was still a little hard to have it written out in my records! I know it doesn't change anything so I'm not sure why it hit me so hard. 

I know you all understand being in denial just a bit and then having to accept reality. Has your doctor told you what your asthma level is? I only knew mine because I'd seen it in my portal.  

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  • JanolaBalboa

    That is a tough thing to hear. 

    I have not looked in my records to see what my level is, not asked my dr., but I can see myself being upset by it being reclassified. 

  • Pljohns

    Kathy–that is a hard reality to hear.  Even though you know it's probably gotten some worse, actually having to HEAR it and know it's in your chart is tough.  

    I was originally diagnosed at moderate persistent-step 3-but I had not had any real exacerbations.  After being in the hospital 4 times in year, my old pulmo(who was really good) told me that even though it was "technically" moderate persistent that she would say "severe uncontrolled".  I don't quite (thankfully) hit the requirements for severe persistent but she said exacerbation wise, I did.  

    It's really hard to hear that and it's like a hammer that just smacks you when you have to realize that life as you had it will never be like that again.  

  • K8sMom2002

    Hugs, Kathy. I agree with JanolaBalboa … it can be hard to face things, even when you know them in your heart already.

    Could it be that it made it more "real" to you than you were ready for at the moment? 

    I'm glad your doc is mostly happy with things, and you guys have a plan in place. 

    And JanolaBalboa … and … What do you think are the pros and cons of knowing your exact classification? How could it help you? How could it not help?

  • Kathy P

    See I knew you guys would understand!

    It was just weird yesterday in the office. I had wanted to ask about my current level, but had forgotten to put it on my long list of questions. It was something I'd been meaning to ask since I'd noticed it on my records. Then just as we were wrapping up, I guess he noticed it on the screen! I think it just caught me off guard!

    I wouldn't say I'm upset per se, more that it tumbled me back through the stages of grief. It is what it is and the basket of meds next to my bed that I have to find room in my suitcase for every time I travel, tells me I'm way past "grab your inhaler and do whatever you want"! I'm happy that things are mostly stable at the moment and I can exercise at the level I want. It's taken a while to get here since everything went sideways a couple years ago. 

  • Pljohns

    Hang in there kathy-you are an AMAZING person with everything you do.  I"m sure it sat you back a bit but look at what all you accomplish.Probably deep inside you already know something had changed but I agree, it's different sort of knowing it and then actually seeing it.  It sounds like you're doing good and your doctor was happy-

  • Brenda Silvia-Torma

    I agree with both of you–it's tough hearing that your diagnosis has changed. Recently, my allergist said that my diagnosis has gone from mild intermittent to mild persistent, and that was a little hard to swallow because it means that my asthma is now a part of my everyday life…whereas before it was just something I thought of when I was sick. 

  • Melissa G

    Hugs Kathy! It is one thing to know things are getting worse and another to see it in "black and white". 

    Hi Janolabalboa, welcome to KFA! ! How long have you had asthma?

  • LK

    Kathy,  I won't repeat all the wise advice said above!    Hugs    !!  For me it was one of those things where way in the back of your mind you KNOW you have a serious breathing problem but it is another matter entirely to HEAR it from a respected medical professional.  It just makes it REAL for you.  

    It wasn't until last fall when I found these forums and read how all of you deal with your asthma that I realized that I had severe asthma.  Just didn't know enough about the levels of it to know that before.  Like you, I went through the grief cycle again.  

    Glad you have improved so much from a couple of years ago!

  • dory2005

    Kathy,  It's so hard to have that diagnosis change. I went from moderate persistent to severe persistent a few years ago, and it really rocked my world. I was in denial for quite a while, and it was hard for me to accept that my life was going to be very different than it was before. It does take some adjustment, but I do think that once you are able to get used to the changes, it will be OK. I've become so much more of an advocate for myself, and also trying to be as proactive as possible. I'm glad that you are stable! Hang in there! 

  • tlb2002

    Kathy, I totally know where you're coming from. When we lived in Tennessee, my son and I were diagnosed with "mild persistent asthma." But our new doc here in Florida has us put us at "moderate persistent." I found out from the statement they give you to hand to the billing staff when you walk out. I was so upset. That's moving way too close to severe, especially for DS who is only 16.

    What is strange to me is that in Tennessee, it was so hard to keep our asthma controlled because the pollen and air quality was so bad. But in Florida, we have been much better overall. In fact, he has started scaling back our meds. Our lung function has been great too. I want to ask him about it but keep forgetting. I'll have to make a note for my September appointment.

    Well, I lied. Maybe this summer hasn't been as good. The ragweed/mold double whammy this year has been killing us. So much rain! As a result, he wants us back on allergy shots. I'm not thrilled about feeling like a pincushion again, but if we breathe better, I'm game.

    Hugs, Kathy! 

  • AmyW

    Kathy, I am also moderate persistent.  I went from having very mild exercise-induced to being moderate persistent in a matter of a couple of months.  It has affected my life so much more than I could have imagined, so I definitely understand your reaction!  

  • K8sMom2002

    Hugs, AmyW … that was a quick shift, and not a lot of time to adjust! 

    TLB2002, hugs as well … different doctors see things differently. It must have been super hard to get that news on the way to pay the bill — no chance even to talk to the doc! I hope you do get a chance to talk to him.

    Dory and Lisa, from what I can see, you guys rock at self-advocacy and taking care of yourselves! 

  • LK

    That is very kind of you, Cynthia, but there are many times when I fall far short!   

  • SHN2014

    Kathy P, thanks for sharing. I know it couldn't have been easy, since putting it down in words like this also makes it more real. It hurts to realize that you have a lung condition that affects your life every day. God knows I am having trouble coming to terms with it; I have only had my adult-onset asthma for about six months and I am already classified as moderate-severe persistent asthma. But for me, it is good to know my classification, even though the cold reality of it slaps me in the face. Knowledge is power. I am better able to focus my research and get the information I need to help me deal with the changes in my life better. That is a good thing. 

    Thanks again and know that we are pulling for you and support you. 

    SHN

  • Kathy P

    Thanks for all the support! It's just crazy how things can change so quickly and spiral out of control. I think I just kept waiting for things to go back to my old baseline. Apparently I have a new baseline. 

    Things are becoming mimo stable. Doc didn't change any meds, but we did make some vhachan to timing and that seems to be helping. I tbthi it has decreased my xopenex need. I was doing am/pm xopenex and budesonide, but we moved the Breo to morning. I seem to be doing ok with just pm budesonide. I only add the xopenex if I'm feeling junky. 

    Oh and I don't remember where we talked about it before, but I asked my doc about whether those xopenex nebs "counted" against the twice a week rescue inhaler usage for "is your asthma under control". He said it does, but if I need it, then take it. But to make sure I really do need it – not add it just because. So if the steroid alone is enough, just do that. 

  • Pljohns

    kathy-sounds like you are making progress in your new "baseline/normal" and that's great.  I never had to hear that I'd gotten worse-I came in at moderate persistant but with the added mess of "non allergic asthma" that only 5% of the people in the world have, it's an added mess.  It's been a challenge since no one knows how to manage it and the lack of a decent pulmo around here has made things difficult to put it mildly.  I have no care team for my asthma that I trust or that displays any real interest in figuring it out and that makes it tough.

    Thank goodness I'm a note taker and have every note I made when I did have a good pulmo (2 years ago) that I fall back on and I end up flying by the seat of my pants and trying to manage this myself.  Every once in a while I get a slap in the face of what I have and how difficult it is and it gets me down.  If it weren't for you guys, I honestly don't know what I'd do.

    I hope your new plan works well Kathy and you can soon be back exercising and doing the things you enjoy.