New and undiagnosed

I’ve considered it , and originally ruled it out (because of the distance). She has some limitations on her ability to travel long distance. However….if I can get a determination that she can be accepted, as a patient at MC Rochester …..I would see if we could somehow make it work.
The most feasible is the west coast , or west of the Rockies.
Thanks for the input….I’ll look into it.

Well, that was a scary situation you went through. Like you, I would want to know more about what is going on, and why the crisis happened that landed you in the hospital.
I guess with no history of asthma or other problem, I would want to have the doctors search for a diagnosis - did he express any opinion of what might be going on? Those with a chronic lung disease (I have bronchiectasis & asthma) can get scary low readings whenever they have a virus or any kind of challenge. Then, as we get better the sats get better.

Would it be fair to say you are doing better than when you got home? Are you able to get up and move around, cooking or showering or other daily activities without being short of breath? Do you want to pursue an exact diagnosis, or just wait & see if your doc thinks it's OK (after he sees you?)

Sue

I'm posting this on behalf of my wife. She's diagnosed with RA, and Pulmonary Fibrosis , interstitial lung disease brought on by the RA.
Her Pulmonary condition is steadily worsening for the last several months. Severe fatigue, shortness of breath, lack of energy, prolonged, and chronic coughing. Basically, she has become increasingly inactivate. My primary area of concern is the lung issue, RA being secondary.
She does have a local rheumatologist, pulmonologist, whom she sees periodically. At this point in, time I don't feel she's having her needs met , with any therapies, other than some prescriptions.
Wishing for her to be seen, and evaluated, comprehensively, by a "new and fresh set of eyes, and minds".....I inquired, and requested an appointment, with the Mayo Clinic, Scottsdale, AZ pulmonary team.
Sadly, I was told that no appointments are available, at this time, and there is no waitlist. Only suggestion offered was to keep checking back periodically for appointment openings. I have also made an inquiry at City of Hope Medical Center in California, and waiting for response.
Can anyone offer any suggestions for lung specialists/medical centers/hospitals, (west coast) that offer a "team approach".....but not necessarily a requirement.....just looking for an excellent lung specialist.
We live in California.
Thank you for any impute.

Hi Sue,
I'm much better now than when initially coming home from hospital. Yes I'm showering and doing small jobs, picking up things off the floor, slowly doing a light load of laundry for example. But it's because I'm afraid. I'm afraid of doing too much because 1) breathlessness scares me so bad.
2) I dont want to find out I cant cook, or make a bed without becoming breathless because that sparks depression.
I have a very long history of anxiety and panic and was agoraphobic for 5 years. Due to a lifetime of anxiety and breathlessness from anxiety attacks alone, it just feels like I cant do this anymore, this continual fight to breathe normally. So I've been on a dose of ativan (2 mg a day) for 20 years. And 2 years ago my gp ordered 1 zopiclone for sleep at bedtime. Now he is saying those must be weaned away because both are central nervous system depressants. I tried for one day not taking the meds at all and my sats showed no difference between having no meds, to taking the meds. My sats were the same.
So when I arrived home and did things my sats went into the low 80s (just re-summing). Now when I do things, I am 90 to 91, and havent seen the 80s in a few days. I dont know if that indicates healing or just a few lucky days. Please feel free to respond. Thank you! 😊

Hi Sue,
I'm much better now than when initially coming home from hospital. Yes I'm showering and doing small jobs, picking up things off the floor, slowly doing a light load of laundry for example. But it's because I'm afraid. I'm afraid of doing too much because 1) breathlessness scares me so bad.
2) I dont want to find out I cant cook, or make a bed without becoming breathless because that sparks depression.
I have a very long history of anxiety and panic and was agoraphobic for 5 years. Due to a lifetime of anxiety and breathlessness from anxiety attacks alone, it just feels like I cant do this anymore, this continual fight to breathe normally. So I've been on a dose of ativan (2 mg a day) for 20 years. And 2 years ago my gp ordered 1 zopiclone for sleep at bedtime. Now he is saying those must be weaned away because both are central nervous system depressants. I tried for one day not taking the meds at all and my sats showed no difference between having no meds, to taking the meds. My sats were the same.
So when I arrived home and did things my sats went into the low 80s (just re-summing). Now when I do things, I am 90 to 91, and havent seen the 80s in a few days. I dont know if that indicates healing or just a few lucky days. Please feel free to respond. Thank you! 😊

Wow, Yvonne, the report on your improved sats sounds like healing to me!

Thank you for sharing your history with me, it helps me understand better what you are experiencing now. Please don't stop taking your long term meds "cold turkey" to see what the effect is - it won't give you a true picture, and depending on the med it can be unhealthy to just quit. Also, there are many newer meds now available that weren't 20 years ago, so your docs should be able to find safe replacements.

Can we chat some more to try to find a "next step" for you toward regaining your confidence in your ability to breathe? Do you have any follow-up appointments to try to figure out the cause of this episode?
Sue

Yes I would love to chat and be able to move forward with confidence. I cooked myself lunch and my heart rate was a bit high. I dont know if its anxiety or my heart trying to pump oxygen around or maybe its saying omgosh we are moving! Not used to that! I see the doctor in person Friday so he can listen to my chest and lungs. With my improvements he may not deem it necessary to see a lung specialist. Hes just that kind of doctor! But yes please I would love to chat regarding gaining confidence in my breathing! Thank you!!!

Well, you accomplished Step 1 - you realized that you can still cook for yourself. I hope it was something you enjoy. I'm not surprised that your heart rate went up, you have been inactive long enough that your body has become "deconditioned." Now you need to move a bit more every time you get up to recondition yourself. A person on the joint replacement discussion says she sets a timer for every 90 minutes, then gets up and walks around for 5 minutes.

Are you ready for Step 2? What might that be? A short walk - even just down the hall if you live in an apartment, or out your door and down the walk if you are in a house? Just keep your phone along in case you need help.

After my Mom had a stroke, she lived in an apartment building in a lovely setting, but was afraid to go out for walks there alone because she tired so easily. She figured out a great solution one day. We took a short walk together, and after a couple minutes, she stopped and said "Right here, mark this spot." Then she said "I'm going to have your brother bring a sturdy lawn chair and set it right here. Then I can walk this far, sit and rest, and walk back." They did, and each week she had someone moving the chair a bit farther for her until she was walking quite a long ways.

The other thing - I'm pretty sure your doctor will agree - stop measuring your blood oxygen and heart rate every little while - this is just increasing your anxiety. Once or twice a day...maybe...as long as you can still breathe (even if it's a little shaky) and your heart isn't pounding out of control, your body will take care of you. If the doctors were really thinking there is something dangerously wrong they would be running a gajillion tests and annoying the heck out of you.

Let me know what you are going to try next!
Sue

Well, you accomplished Step 1 - you realized that you can still cook for yourself. I hope it was something you enjoy. I'm not surprised that your heart rate went up, you have been inactive long enough that your body has become "deconditioned." Now you need to move a bit more every time you get up to recondition yourself. A person on the joint replacement discussion says she sets a timer for every 90 minutes, then gets up and walks around for 5 minutes.

Are you ready for Step 2? What might that be? A short walk - even just down the hall if you live in an apartment, or out your door and down the walk if you are in a house? Just keep your phone along in case you need help.

After my Mom had a stroke, she lived in an apartment building in a lovely setting, but was afraid to go out for walks there alone because she tired so easily. She figured out a great solution one day. We took a short walk together, and after a couple minutes, she stopped and said "Right here, mark this spot." Then she said "I'm going to have your brother bring a sturdy lawn chair and set it right here. Then I can walk this far, sit and rest, and walk back." They did, and each week she had someone moving the chair a bit farther for her until she was walking quite a long ways.

The other thing - I'm pretty sure your doctor will agree - stop measuring your blood oxygen and heart rate every little while - this is just increasing your anxiety. Once or twice a day...maybe...as long as you can still breathe (even if it's a little shaky) and your heart isn't pounding out of control, your body will take care of you. If the doctors were really thinking there is something dangerously wrong they would be running a gajillion tests and annoying the heck out of you.

Let me know what you are going to try next!
Sue

And I agree and was told in hospital I check the oximeter too much. So I end up going and sitting even if I feel okay because my meter says 90.