What a slow process...

[Aurorastar_]

Dr appointments all day Friday, with my pulmonary Doctor. Complete pulmonary function test done also..

I finally heard the words "you have moderate restrictive lung diease, but we don't know from what"... I replied with "do these things always take so long to figure out?" "No. Was his reply. But in your case it's a slow process".(that's what keeps playing in my head)

I found out my lungs are currently working at 62%.. I was informed (don't know if it's true, I'm new to all this) but he said I could still live a completely normal life with even having restricted lungs. Anyone agree?

One of my main concern at this point is my oxygen levels. They REALLY drop when I'm even moderately active. Walking, cleaning, daily living... During my hall walk it reached mid 80's in 3 minutes. I'm frustrated. I'm worried. And the doctors can't tell me why this is happening...

Why all my test (except PFT test, and oxygen levels) are pretty normal.

Heart echo; normal (docs were thinking pulmonary hypertension) still wondering about exercise enduced pulmonary hypertension. But also they said it would have shown on echo.

Lungs (other then the restrictive) look completely fine. Ct scan with contrast (no blood clot in lungs)

Stress test; fine except oxygen drop to 85% with blood gas draw.

All blood work fine.

Made a trip to ER today.. I'm feeling light headed whenever I'm up and moving. Oxygen is reaching mid/high 80's.. They did complete CBC, blood work came back normal. I heard it again "this is a slow process to figure these things out".. Well, I'm 38. My oxygen shouldn't just naturally run this low should it? I don't know what to do. Sit down to keep it 95%. Or go on with my life as they tell me too.. I'm afraid of passing out. But they told me my body is "used" to running low obviously.

I have an appointment at the Mayo clinic here in the USA in August. I just pray this low oxygen keeps me fine until then. I need answers.. And nobody seems to have them.

Any advice would be appreciated. I'm always reading on here, trying to educate myself. I don't reply as much, because I feel I don't know enough about all this yet. Hope everyone is having a great day!

God Bless!!

[bandit2]

Is that like mild COPD sorry I have to laugh because it makes no sense. You r in the states and there are lots of good places to call. I would call the cancer institue of America, they dont just do cancer treatment and are very very knowledgeable. They might be able to answer your questions or refer you to something or someone in your area. Wish we had one here in Canada we seem to behind alot. When dr's say its a long process that always meant to me they have no idea but we will keep prodding at you until something comes up. I flunked my stress test first time never been on a treadmill and when it started off I flew backwards and the lady wouldnt let me try again. The second time I did one it was the slow 10 minute one because that was all I could do. They flashed around the words COPD but not a definate diagnosis. I think they like to scare the crap out of you just cause they can. Good luck

[Aurorastar_ in reply to bandit2]

No, COPD is an obstructive lung issue. Restrictive lung disease is opposite. You're restricted from taking large amounts of air in your lungs. They don't fully expand.

I have called the Mayo Clinic, which is ranked #1 here in the states. Unfortunately it's a 3 month wait as it seems to be anywhere. (Even my pulmonary Doctor)..

I'm not letting them scare me, it's my numbers that are. Those are more truthful to me..

Stress test aren't fun! You're right about that!

Thank you for the reply, I really appreciated it

[bandit2 in reply to Aurorastar_]

sounds the same to me neither can expand their lungs so you need an inhaler to help you open airways to expand your lungs. Do you have puffers like ventolin, advair something. Even breathing into a paperbag will help with oxygen and breathing. Its always a wait thats why I said to call the institute and see what they could offer to you. It cant hurt its only a call the worst they can say is sorry we cant help.

[Katinka46]

Morning Aurora,

It is quarter to four in the morning here. Glimmerings of light. I have had a "sub-optimal" (phrase much used by doctors over here!) night. But am often awake at this time. I am so sorry about the delay in your diagnosis. It is unbelievably frustrating. It has been somewhat similar for me. Four years to diagnose chronic thromboembolic disease (CTED), another two years to diagnose obliterative bronchiolitis, and now I believe that I am developing pulmonary hypertension, a very common consequence of CTED, and a condition that can take time to show itself. So I do empathise with you.

To diagnose Pulmonary Fibrosis I think might require a biopsy Has this been mentioned? But I understand that there are many forms of interstitial lung disease. There is certainly something wrong. Hang in there and let us know what happens.

Love and hugs

Kate xxx

[Aurorastar_ in reply to Katinka46]

Thank you, I am trying my best to stay positive

No biopsy yet, but I was told it's not pulmonary fibrosis, as it would have showed on the genetic test that they have done on me.

Sounds like your wait was long to figure it out too.. That's why I'm staying so positive, many people have been through what I have, and stayed strong during it!

Thank you for all your kind words. I appreciate it 😀

[Katinka46]

The best help I had throughout the nightmare was my family and friends. I could not have survived as well as I have without that. I hope you have a good network of support? And another crucial person is your GP. I do not know what the equivalent role is in the States? My knowledge of the American medical world comes from avid watching of boxed sets of Grey's Anatomy. And in a hospital of context there are no GPs.

All the best

Kate xxx

[Aurorastar_ in reply to Katinka46]

I actually have a very close relationship with my GP.. I know that's important because he's closest to me.

Our system here is ok, just long waiting times (up to 3 months or more) to see a doctor in a specialized field. Even though I am being told over and over by other doctors, that they're doing all the "major"'test on me to be done. Nobody wants to fall in the cracks of the system though.

I have family support, Even though sometimes it's easy to feel like you're bugging them with always talking about the same things.

I feel just as lucky to have this group. Strangers taking the time to comfort each other during hard times, is very unselfish.

God Bless

[Caspiana]

Hello. I am sorry you are going through this frightening and tough time. Like Kate , I also have Broncholotis Obliterans. And I am 42. So we are quite near in age. It does take time for them to run tests and figure things out. I really sympathise.

Listen to your body, when you feel you can't do things then do rest. I find pushing myself often has bad consequences later on. Trust your gut feeling.

This is a great place to get support for me as my family are away all day and it can get lonely. Also, I can talk to people with similar health issues and we understand each other. Friends and family too are a great comfort. I hope you have support nearby too.

Please do take care and let us know how things go after your appointment.

Sending happy thoughts.

Cas xx 🌷

[Hidden]

I also have suspected BO. I've just turned 40. The numbers can be frightening but don't let them get into your head. I had a baby 15 months ago with FEV1 of 48%! 62 while obviously not the best is pretty good! If you smoke, stop. Keep looking after your health, do some mild exercise but most importantly, listen to your body always. If you're tired, rest, if you're sick, go to the doctor etc

Right now you're in shock, take a few days to let it settle in then get your fighting spirit back and don't let this take over your life any more than it has to xxxx

[Aurorastar_ in reply to Hidden]

Thank you dear. I'm sorry, what's BO? I'm pretty new to learning all this.. You're right, I need to stay strong. And I'm trying..

Wow! Congratulations on the bundle of joy! What a blessing 😊

Oh, I've never smoked. And have always been very healthy up until this past October. Everything can't be explained right now, I'm sure with more time it will all come together

Enjoy your day!

[Hidden in reply to Aurorastar_]

Oh apologies, it's bronchiolitis obliterans like the other ladies mentioned. You don't have to be strong at the moment. It takes time to process it all. Be gentle with yourself and give yourself time to come to terms with it all and then when you're ready to fight back, fight back!

I've never smoked either! It's frustrating isn't it?! We're all here so lean on us xx

[Katinka46 in reply to Aurorastar_]

OB also known as BO (unfortunate connotations!!) is Obliterative Bronchiolitis. And don't worry about not knowing about it. Most doctors haven't heard of it either. It is in the small airways but is NOT a small disease. It comes about from damage to the bronchioles, and results in fibrotic or inflammatory problems. Mine is fibrotic. It presents as an obstructive rather than a restrictive airways disease, so people think it is COPD, but it isn't.

In my case there is very little to be done. As is often the case with other fibrotic lung diseases.

Love

K xxx

[Aurorastar_ in reply to Hidden]

broncholotis obliterans? Sorry I hadn't read all my replies yet when I asked

[Sooki]

This sounds like Idiopathic Pulmonary Fibrosis,it's not genetic,it can be familial,it is a restrictive lung disease,your symptoms are typical of IPF, I can sit and my oxygen is in the 90's but walk or any other physical things down it goes into the 80's,so I use oxygen for any physical activity.U need to ask to be referred to a specialist ILD centre,there are many in the USA,.try the Inspire site it's the American Pulmonary Fibrosis site.Good Luck.

[Aurorastar_ in reply to Sooki]

Yes I had read about IPf, and was told that this isn't what I have that it would have showed on my CT scan.. Not sure if that's true. May I ask when you were diagnosed? And how they found out for you?

Thank you..

[jarc13]

my oxygen stayed mid 90's sitting and dropped into 80's at exertion. they put me on advair and oxygen. i then looked up online breathing and upper body exercising for COPD and did them faithfully every day. it is a year later and a big improvement so taking a proactive stance to my body helped me mentally and ultimately physically. hope this is helpful as our bodies are all so different. i for instance never in my life could blow up a balloon so evidently my lungs when i was young were not at the optimum yet never had a bit of trouble til last year when i had pneumonia and was diagnosed. hope this is helpful.

[Aurorastar_ in reply to jarc13]

Your reply sure was helpful. Thank you for taking the time. Now if you don't mind me asking, does your oxygen drop due to having COPD? Or do you have another health issue that is making for this? I guess my biggest concern is I'm going to pass out one day. Or steady low oxygen will cause other damage to my body. How long have you had low oxygen levels?

Thank you for the tips. I will look up COPD exercises, as it seems it goes hand and hand with restrictive lung. And I am starting to feel "weak"...

God Bless

[jarc13 in reply to Aurorastar_]

i had pneumonia last year and was diagnosed with stage 4 COPD, the worst. i was on oxygen all the time except when i was sitting. like i said i looked up breathing and upper body exercises and did them every day and speck by speck i improved. my pulmonologist was amazed. so there is always help and when you’re doing something positive it helps your mind too. God Bless!

[rubyred777 in reply to jarc13]

Hi jarc13 , Was just reading your reply. Wondering what exercises you do. Also, can you blow up a balloon now? That is actually one of the exercises I do every day. 😊 Rubyxx

[jarc13 in reply to rubyred777]

youtube.com/watch?v=31Ew1og...(Not working as expected?)

youtu.be/Kp8WK4hFsTs(Not working as expected?)

oddly enough i have never in my life been able to blow up a balloon which is probably why my stats were low.

hope these help!

[Sooki]

I was diagnosed 3 years ago,it was a cough that wouldn't go away.High resolution CT scan,and what they call Velcro like crackles can be heard thru stethoscope .If there is doubt a biopsy is usually done,I didn't need biopsy.Its not thought to be genetic but can be familial,my mother also had it.Your symptoms are typical of IPF,if it is a known cause then it's PF and the outlook is much better if they can find a cause.i would seriously consider a second opinion,untreated low oxygen sats can lead to damage to other organs especially the heart, pulmonary hypertension.Sooki.

[Aurorastar_ in reply to Sooki]

Yes, I have a standing appointment in August, at the Mayo clinic. They're ranked #1 here, so I am hoping they can shed some light on all this confusion. I think having a diagnosis as to why my OX is dropping, will ease my mind. I'm still in that stressful "what's causing it" stage..

I will do some research on IPf/ PF just in case. I didn't do much after they told me it would have showed In one of the CT scans I had done if I had it. I'm having another one done next month.. Just to see if I have any changes to my lungs.

Thanks again.

[Pmb6]

Wanted to say, try not worry! Easier said than done I know. But the less anxious you are the better! You know you get lightheaded when exerting, we'll try do less. It's amazing how much fuzz about things, we do!!! If gets bad, ask for help!!! Ask about stopping working, if you are still!!! I'm 59 this year, seeing Consultant July gonna ask if I retire early will I qualify for any financial help, if lungs bad!!! I've worked helping folk all my adult life, perhaps it's my turn now!!!!

Please take care when lightheaded, don't want you falling over, banging bits of you. Keep strong in mind, and live each day to as full as is comfortable!!! Remember to gaze at gods beautiful planet!!!! Draw comfort from the beauty of a tree, it's standing still, and look how beautiful it is!!!! Bless all your efforts !!!

[Marylyn65]

Maybe you have sleep apnea and that is why your oxygen levels are 83% my oxygen levels with the untreated sleep apnea were 50 and sometimes under. By usi ngthe cpap machine they are up to 94-95%