At NJH and need to vent

I just looked up this blood result I guess I will talk to the Dr Monday. The last three items scare me..can u look it up and tell me what U think?

Truthfully, I'm not sure what these mean. I've never had anyone explain them in detail. I do know that in addition to NTM, bronchiectasis, and a cavitary nodule, I have had pseudomonas, rare yeast, and something else I can't remember off the top of my head. Like you, in the beginning, I looked for anything that would reassure me that I wasn't THAT sick...I still do - only in a different way. My goal now is that everything remain STABLE. As long as the NTM continues to wax and wane, and as long as the cavitary nodule remains the same size or smaller, I'm resigned to accepting that I will die with this disease - not because of it. I know you'll be prepared with your questions on Monday and hopefully get answers that will ease your mind. There may be someone else on this forum that has more information about your results. I'll be interested to know. In the meantime, hang in there until Monday. I've added you to my prayer list. Busy

Bon, when I was at NJH I was told Walgreens, etc. sell BOOST OXYGEN which is a little bottle of oxygen you just hold up to your mouth and it sprays oxygen into your lungs. It works great and I took it everywhere with me (it fits in your purse). I really didn't use it much but I think it was peace of mind that I had it if needed. Once I got home I ordered it on Amazon.

Truthfully, I'm not sure what these mean. I've never had anyone explain them in detail. I do know that in addition to NTM, bronchiectasis, and a cavitary nodule, I have had pseudomonas, rare yeast, and something else I can't remember off the top of my head. Like you, in the beginning, I looked for anything that would reassure me that I wasn't THAT sick...I still do - only in a different way. My goal now is that everything remain STABLE. As long as the NTM continues to wax and wane, and as long as the cavitary nodule remains the same size or smaller, I'm resigned to accepting that I will die with this disease - not because of it. I know you'll be prepared with your questions on Monday and hopefully get answers that will ease your mind. There may be someone else on this forum that has more information about your results. I'll be interested to know. In the meantime, hang in there until Monday. I've added you to my prayer list. Busy

Oh yes , the culture results come piecemeal and can be alarming. I'm not expert but my sputum results often show those Gram positive and Gram negative items. (Positive ones are normal resp flora.) I have had stentotrophamonas and a fungus of some kind aa well as MAC, but have never been treated for anything but the MAC. .. so have stopped worrying about the results (except for the MAC culture!) Certainly ask Dr Daley but these are not necessarily cause for concern. ...

I do get scared, Bon. But my oximeter is my friend when I'm really freaking out. I sit for a few minutes, breathing evenly, before I attach it to my finger to get a reading. It has never indicated that I'm in a "danger" zone. It helps me plant my feet back in the present and know that anxiety and fear are nipping at my heels. My NJH doctor said that dropping below 90 is cause for concern...not panic...but time to see a doctor. Since they've given you O2, it probably means just what they say - you've not acclimated to the high altitude. Try (as best you can) to relax into it. The extra O2 will make you feel better. It doesn't mean it's a permanent thing. .

I just re read your response and thank you so much. It really helps to communicate with someone who goes thru the same thing, who understands.
My oxygen was 87 the first day I got here, today it’s 93…….

You said, "My oxygen was 87 the first day I got here, today it’s 93……." That's great news! That means your body is acclimating to the altitude. Travel at altitude is scary for me because I can never get my O2 above the mid-80's.
Today we had an air quality alert, and I was outdoors tending to guests - I bet my oxygen was below 93 all day - at 900 feet of altitude.

So I have read more about your tests, and don't see anything alarming.

Also, when you feel anxious or in pain, can you try 4-4-4 breathing to calm yourself? Sit or lie quietly, put your hand on your belly and breathe in through your nose for a count of 4, hold for a count of 4 (if you can) then breathe out through pursed lips for a count of 4. You should feel your belly expand and contract as you do this. As you do this visualize your worry, fear or pain blowing away on your outgoing breath. Repeat at least 5 times, or as long as you need to until you feel calm.

This is a technique I use to calm pain spasms, shortness of breath, angry thoughts... Can you try it tonight to fall asleep without worrying?
Sue

Yes I will try it. So you do get out of breath sometimes? Does it freak you out. No rush to answer..enjoy your celebration! And thanks sue…..

I have had problems with shortness of breath for many years, sometimes really bad, other times almost unnoticeable.
No, I can't say it ever freaks me out, but I was a runner and used to getting out of breath when pushing hard. So I guess I always knew that I would eventually catch my breath. It mainly makes me angry when it is bad and I can't do what I want, like chase grandkids or climb a lot of steps.
Sue