I’m new - with question

[nancyj]

I've had breathing issues for many years. I was recently diagnosed with "Alpha -1 antitrypsin deficiency." I am a SZ with a level of 62.8 I am not on O2. If my O2 level gets below 95 even for just a few minutes I immediately get a headache. Is this common? Should I tell my doctor?

So far my O2 levels have only gotten in the low 80’s when I am outside when it is hot and humid. My doctor did an overnight O2 test and my results came back normal.

Since my O2 levels are not documented at 88 or below I understand I am not eligible for oxygen. My question is should I go ahead oxygen and get oxygen anyway to take with me when I am outside?

Thanks!
Nancy

[David]

Welcome Nancy

My name is David and on behave of COPD in Canada & the World I want to extend to you a warm welcome.


You will find a lot of information here .

So look around and when you are ready please join us back at the fence".

[lavishgail]

Hi Nancy,
I'm Gail, and yes, if you can't breath and you're in the low 80s that's not good. I don't know why you're doctor said you're normal, bc that's not normal. Not being able to breath is hurting you're brain cell's, if I were u, I would get another doctor for 2nd opinion!!

I'm same as u. I can not go outside in the heat, it's bad on me and found myself crawling to the door, to get to my 02, when thinking I'll be fine for 5 minutes with out it. I'm never fine.
I learned my lesson and bring 02 where ever I go.

Nice to meet you, and please come visit with us at the fence, that's one up from here, we all get together for a cuppa coffee or tea.
Hope to hear from you soon,
Gail. Welcome.

[gerald]

Nancy, a couple of questions for you

1. did you doctor do a spirometry test on you, and do you know what the number were FEV1 & FCV

2. Did they get you to do the 6MWT (6 minute walking test)?

3. Have you been referred to a Pulmonary or Respiratory specialist?

I was told that as long as your blood oxygen levels remain about 88% there is not problem. 95% at resting is a good level.
The critical oxygen levels would occur when you are sleeping and when you are exerting effort.  Oxygen levels that drop when you are working etc but come right back it you stop and catch your breath as not especially worrying.

If your blood oxygen levels consistently drop below 88% it would make sense to note them and discuss them with our doctor.
To my knowledge, in most areas it will be difficult to get oxygen without a doctors prescription.

You may want to create a list of questions you need your doctor to answer.  One of those might be why he/she feels that you don't need oxygen

[John]

welcome Nancy! I hope you find the answers to your questions here. like everyone else's said I would think you would need to go see a pulmonologist and get a better evaluation. Glad to have you on board and 🌹

[joany]

Welcome...couple of things from my humble opinion.  I wouldn't jump to any conclusions about what you need until the conclusions come from the primary doctor and/or the pulmonologist.   But What I Know for Sure (I like that topic) is that panic, anxiety, humidity, heat can affect my breathing  in an instant.  The best immediate response, highly recommended, is Pursed-Lip Breathing - even if you've tried it, try again, ssslllooowwwllllyyyy.   Do take it easy until you can receive help from medical professionals.

"Practice breathing techniques.

Practice Pursed-Lip Breathing – Practice makes perfect, especially when it comes to breathing exercises for lung disease. Pursed-lip breathing is especially effective during sudden periods of shortness of breath. To master pursed lip breathing, inhale deeply through your nose and exhale slowly through pursed lips. Practicing this method 3 to 4 times a day will allow you to use it more effectively when sudden periods of breathlessness arise."

[sonnygirl]

 Hi Nancy,
  I am also new here.  The folks are very welcoming and its a wonderful place to spend with people who understand.

    Hugs from NC, USA

[barb7330]

Yes this is a great site if you need answers....I love your little dog Sonny....Is he shih tsu?

[sonnygirl]

  Barb, I know she looks like a he:-)      Her name is Lola LaRue and she is a maltipoo.  She got most of her traits from her Maltese dad.   

[lavishgail]

Awwww, very cute Sonny. I have a new puppy too, he is 70% Bichon and 30% Maltese oh, he's so cute with his little tiny short legs he's pure white with apricot colored ears just adorable both your dog and mine are so cute and so is John's dog cute to! everybody's animals are too..

Hope you visit with us at the fence!
Gail.

[barb7330]

My Mom had a maltese all white...Mom passed away and my Sister kept the dog but she was old and finally had to be put down...I would love to have another dog but living in apt. would have to walk it and all and I'm getting to old for that as I'm on oxygen as well a good part of the time.

Hope you all