Too much time to think... Ugh

Too much time to think... Ugh

Appointment with heart Doctor next month, being told either looks like restrictive lung disease,  or  Pulmonary hypertension :/ 

 Main symptom is I can't take a deep breath .. During my stress test,  my oxygen level actually got down to 84. Ct scan of lungs looked great doc said. Heart echo normal.  So far every test test came back normal ,  other than that..  I've never smoked, don't drink,  and live a pretty normal life. Doctors seem to not being taking this very serious. Told me they believe me, but it seems they aren't in a hurry to get an answer. I'm 38, all this started October 6th, after a bad run of Bronchitis.  Just want to breath normal again. And have some answers. Everything I read is super scary! We don't have a group like this here in the USA, thanks in advance for any advice! May God bless you all 😊

26 Replies

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  • Can't offer much by way of advice but eat healthily, exercise where you can and whatever you do don't Google! You will be convinced the end of the world is nigh.Try not to worry (easier said than done I know) as stress and tension will make breathing worse. Next month is almost here!

  • You're right about the stress! Whenever I do get worked up, breathing gets harder and I almost panic because I feel like I'm stressed, and being restricted with air. 

    This site is very calming though :) 

    Thank you. 

    God Bless 

  • God bless you too.

  • Hi,if you practice breathing exercises when you feel ok it,s a lot easier when you feel bad to then use them,we get told this at pulmonary rehab,try to get referred via your GP.D. 🌸🌹🌺

  • Thank you, just am hearing about breathing exercises. Sounds like I will try these! Going to YouTube and see If something comes up. Thank you :) and good luck to you! 

    God Bless. 

  • Sorry I don't have anything useful to offer you but I agree with Snodgrass, stay away from Google, exercise and healthy food are good for you whatever is going on. Good luck with your appointment and don't meet trouble half way.

    Good to meet you and getting to know you better xxx

  • Glad to meet you also! Thank you for the kind words. 

    Don't meet trouble half way... I like that! And I will keep that in mind, and play it in my head whenever I think of googling anything! Lol 

    Enjoy your day, 

    God Bless. 

  • Aurora, I hope you get some answers soon. 

  • Thank you! I appreciate that. And until I do, I will stay educated with you guys. Everyone here is wonderful! 

    God Bless :) 

  • Hi Aurorastar, try not to read things online as that will scare you. Keep making the doctors listen so they know to take you seriously. I hope things improve soon and wish you well. Xxx 

  • Thank you Sassy. Yes, I am demanding to be heard. It was difficult at first, then after the stress test, when my doctor told me "something is definitely going on, I don't think you're crazy" that was some relief. Early detection is key right? :) 

    I wish you well also. 

    God Bless

  • Welcome to the site Aurorastar,         I am also from USA.  I have been a member for over a yr. now. The people on this site are amazing. I gotta say, they are like family to me. It's hard to help you out, with your symptoms.  I will ask you one question; is your blood pressure high?  I will be curious to see what you find out.😊 Also,did he give you inhalers or anything to help you out? Would seem to me it has something to do with the bronchitis you had. Maybe another member will come along, with experience of your symptoms.  Please let us know what you find out.  Or if you want to chat we're here. 😊 Rubyxx 😊

  • Hello dear, well my BP has been kinda low for me 100/74 nothing scary low, but I'm usually 112/78 but I've also really changed my eating habits. Much more "healthy" now. And drinking TONS of water! Boy, that stuff is hard to get down! 😐 Lol 

    I am taking  albuterol  rescue(blue one) when my breathing gets really  Labored. Mostly on fast paced walks, stairs, and when around  chemicals. I wot in a salon, and at first thought I was having  an allergic reaction to something. As it's worse there. 

     They originally started me on asthma medication, because my first PF test  indicated that's what it was..  When I failed my second PF test back in February, he told me "it's not looking like asthma now" and all the test started. In which I have been told by my doctor "it's my job to see why a overall healthy 38 year old, can't breath" 

    My CBC came back normal, heart echo, CT of lungs, and stress test (even though it did show major drop in my  oxygen levels at end of being on the bike) 

    Since all this, I stopped all Asthma meds (not the rescue, cause it actually does help, even though doc said he didn't see a change after I took it) but figure why should I take the meds, if I don't have asthma? 

    Thanks for your time :) 

    God Bless. 

  • Two questions for you. Why do you not think it's the chemicals at work now? If you have breathing problems,  it's not the best place to be.😊 Also , if you had PF test, do you have the numbers? Or did Dr. tell you your lung function? Just trying to understand what you got going on a little better.😊           So I live in New Jersey.  What state are you from?  😊.xx

  •  Oh I definitely thought at first it was the chemicals at work,  I requested to see an allergist  and my doctor said he would refer me but he didn't think that this was what it was,  because I am also getting flared up at home.  I now try to avoid chemicals at work or wear a mask.  I am trying to read all my test results the best that I can  my patient portal ,  but I didn't get any results for my PF test :(  just that I failed. 

    You aren't to far from me, Michigan here! 😊 

     Thabks for your advice! 

  • Also,  other than a symptom of feeling like I can't take a deep breath,  I have a cough. Lots of clear mucus comes up. Looks like a thick spit. Had that tested also, came back normal.  During one of my test they couldn't get a clear picture,  dr. came in and told me it looks like I had swallowed a lot of the mucus I had going on..  My upper chest feels like I have a cold In it. Been like this for months :/ 

  • If you failed the PFS , and you have a steroid inhaler, why not use that? It helps inflammation.  Also coughing. Being your in USA, it's your right to have a copy of those numbers. That gives you a lot of info.  😊.xx

  • Hello Aurorastar

    And Welcome....USA or Timbuktu, it makes no difference on here, we are all here to help and support each other 😂

    Post away with your questions, the members on here have vast experience, and knowledge of problems with your heart and lungs, and many other things.

    They are living with it every day, so know what they are talking about.

    The one piece of advice most will give you, is keep away from Doctor Google, you will worry yourself senseless if you believe half of what you read.

    I have had numerous tests done for heart problems, all coming back normal....Apart from High Blood Pressure which is now under control with better Meds, my intermittent symptoms, missing heartbeats etc, never happened during testing ECG etc,

    Then last Christmas Eve my Cardiac Consultant gave me a Cardiac Perfusion Scan.

    It involved, no caffeine being consumed for several hour before hand and no food on the day.

    You are given an injection of a radioactive substance, followed by another injection of a drug that puts you heart under stress, to simulate exercise.

    You have to wait an hour, in a special waiting area, as you are radioactive, then gave me a heart scan. When l left l felt fine, but had to keep away from young children and babies for 24 hours due to the radioactive isotope being present in my body...you pass it away in your urine.

    It in two parts, you have to return in four weeks and have it done again, less the stress shot.

    When l went for my results, it had picked up thickening Furing up of my heart Arteries, l am still having other tests.

    My Cholesterol levels have always been low, but l now have to try and keep them below 2, and l have been put on a stronger Statin, have other heart Meds, and an under tongue spray emergency Med if l start getting chest pain.

    What a Saga....if you have ploughed your way through that lot, well done 😂😂😂

    Persevere with getting to the root of your problems, you know your body better than any Medic, and usually know when something is wrong.

    Good Luck

    Velvet xx

  • Thank you Velvet, for your kind words. My Bp has been running a little low for me at recent doctor visits I have. I like to think low is better than high! :/ but I don't know much about this stuff. 

    Sounds like you have been through a great deal yourself, glad to see you staying so positive! I admire that, and I'm trying myself :) 

    God bless. 

  • Hi velvet, my son's father in law has just had the radioactive heart test done, prior to receiving chemo for lymphatic cancer. Never had heard of it before. I don't know whether he had the stress test or not. 

  • If you do have PH do not panic phassociation.uk.com/  is a great place to look.  I have RLD and PH and other issues that do not help.  I was diagnosed in 2012 with PH and when I first read up on it, it scarred me too!  But it can be kept under  control.  One of the worst things is that there are not to many doctors understand PH fully and that needs to be the first question to ask the doctor in front of you.   PH can be kept under control with a lot of drugs used for heart conditions etc.

    One of my lung doctors stated that the Pressure was mild to medium so not so much of a worry?  But a PH specialist said that with my other conditions I need further support as they are compounding the condition!  Just got to get past their ego's I am afraid.

    Be Well

  • I'm afraid you're correct about people's lack of knowledge on PH, whenever I mention it to anyone I hear a lot of "OH! That's really bad! Hope you don't have that!" Well, thanks. :/ maybe people are just not informed of all the treatments out there. When I made mention of it to my primary physician, he said "oh dear, that is so rare. I've only seen it in one person my entire career. I don't think that's it" conversation over. Nobody seems to know anything.. 

    Thank you for the link, seems like you guys know more than Doctor! Lol 

    God Bless. 

  • I can't help with advice Aurora but would like to welcome you to our lovely group xx

  • Thank you for the warm welcome! I really appreciate that. :) 

    God Bless. 

  • How beautiful you are!  

    My advice is to try not to panic, and carry on with your normal life so that you don't sit around feeling sorry for yourself and dwelling on what be wrong with you.  You may have to make some adaptations, like walking more slowly than usual, and cutting out some strenuous exercise (hopefully this will be temporary).  Try continuous blowing out through pursed lips when climbing stairs or doing anything that makes you breathless, and don't worry too much about not being able to take a deep breath - I've struggled with this for 10 years and am still here to tell the tale!

    Best of luck & god bless

  • Oh well thank you! 

    Yes, I am seeing this is definitely all leading to a lifestyle change. And that's ok. I am finding myself admiring those who can be active/ run. But when that happens, I try and reminding myself we ALL are going through something! Everything just isn't visible from outside. :) 

    10 years, that's s long time compared to my 6 month. I think you were called to "tell the tale" ;) thank you for your kind words, it really makes me feel hopeful! 

    Have a lovely day! 

    And God Bless you! 

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