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Old 07-19-2009, 12:39 PM   #1
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Shortness of Breath, No Answers After 5 Months

I have been googling this topic for a long time now and haven't found any answers for myself or others. Just glancing over a couple posts on here.. I know exactly what's happening to them and how they're feeling, but I have no answers for any of us. This is a long story 5 months in the making.

Stats: 41, female, healthy, not overweight

First off, I'm never sick. I don't even get so much as a cold. Feb 12th I woke up to get the kids ready for school and I felt like I was gonna throw up. I called my mom to get the kids ready and laid down on the couch. I slept literally all day. I was up for an hour and went back to bed.

The next day I was extremely disoriented. Again, my mom had to come over to get the kids off to school. I laid on the couch and slept. My husband kept calling me from work and I couldn't even form a complete sentence. I don't even remember calling the Drs office. He had to call and make sure I had an appointment. So he came home from work and took me. I couldn't stay awake. I had a fever of 104 and they admitted me to the hospital then and there. I don't remember much. I don't even know how I got my clothes off and into bed. I was told I had pneumonia and was in the hospital for 3 days. Again, I had no cough, no congestion whatsoever. I couldn't take a deep breath because the pain was too much. I had pain in the center of my chest radiating to my right shoulder. It took about 10 days to finally be able take a regular breath. Then something else happened.

I began to get short of breath. It was like someone had put a plastic bag over my head and I couldn't get enough air. I would have to literally gasp. It gradually got worse where I could no longer work out I felt I would fall over on the treadmill and die of a heart attack. That was the first thing I had to stop.

I've had a zillion tests.

Chest Xray - Normal
Upper GI - Showed that my small hiatal hernia was still the same size. (I take 30 mg of Prevacid daily)
huff and puff (no idea the correct title lol) - showed some shallow breathing.
Echo Cardiogram - Normal
CT scan - Normal
VQ scan - Normal
Heart Cath (both sides) - Fine
Overnight Pulse Ox - Finally the overnight pulse ox found something. During the night my oxygen level would drop to 80 several times. Normal is 93-99. You would think that someone would be trying harder to fix me with my ox sat going that low, wouldn't you??

I didn't think my symptoms could get worse but they have. I can no longer sleep in my own bed. I have to be elevated and have oxygen at night. I don't even know if it's helping. I am constantly out of breath, but even trying to do the simplest things make me dizzy and tired. I've been taking daily naps. I have chest pains or pressure in the center of my chest.

So after 5 months and consults with my family Dr, pulmonologist, cardiologist I still am no closer to the answer than when I began. It seems that it gets a lot worse with warm air and humidity. I guess it could also be anxiety but I have nothing at all to be anxious or worried about. I'm a stay at home mom and my kids are pretty self sufficient. My worst worry might be what to make for dinner? I dunno.

The last thing I did was the Heart Cath. I had it done last Tuesday. I just was ready to give up when he said my heart was fine. There IS a reason for this!! I'm not crazy!! So that sent me into a depression for a few days. I'm coming out of it now and ready to start fighting again. This time I'm taking over. I specifically want a 24 hr pulse ox test and a stress test. You would have thought I would have had these before I got a tube in my groin and up into my heart. Those are the two tests I want. If they DO show something and I still can't get any answers I'm taking all my records and shipping myself off to Pittsburgh when they may have the answers I need.

Also I'm tired of looking for the cause before getting treatment for the problem. I want meds and I want them now. I'm sure there's something out there that will help me with the symptoms.

Anyway (if you're still reading), to those of you like me, bless your hearts, I know how agonizing this is. I hope we all get the answers we need.

 
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Old 07-30-2009, 09:30 AM   #2
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Re: Shortness of Breath, No Answers After 5 Months

I finally saw my PC Dr today. We're going with Niravam .25 disoluble tablet for treatment. Basically it's Xanax in non-pill form. He believes I have panic disorder and it came on when I stopped smoking. I had smoked for 20+ years and I used that as a coping method. Makes sense. Since I quit smoking and had pneumonia at the same time I assumed it was from after effects of the illness.

So now I am anxiously (pun intended) waiting for the perscription to be filled. I've got all my hopes on that little pill working. I hope it works!

 
Old 08-03-2009, 10:12 AM   #3
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Re: Shortness of Breath, No Answers After 5 Months

Benzo's (Xanax) are a very dangerous drug potentially. I would do some serious reading on it. Most doctors are unaware of the severity of it's addicting potential and the incredible prolonged withdrawal, much worst than heroin.

 
Old 08-04-2009, 07:43 AM   #4
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Re: Shortness of Breath, No Answers After 5 Months

I'm very aware of the addiction problem and it doesn't bother me. I'm on a lot of meds anyway being bipolar. I will take anything to make this go away, I don't care what it is. And it has helped a great deal. Sat was the first time I could go fishing on the lake with my family this summer w/o gasping for air. And I'll be able to go to a picnic this Sat coming up. I'm feeling better for the first time in 5 months.

 
Old 08-12-2009, 06:03 AM   #5
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Re: Shortness of Breath, No Answers After 5 Months

good luck, hope it works out well

 
Old 08-13-2009, 07:22 PM   #6
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Re: Shortness of Breath, No Answers After 5 Months

Has your doctor ever considered Multiple Sclerosis? Shortness of breath is one of the symptoms of this neurological disorder. When you said it gets worse with heat, my first thought was MS. Ask your doctor for a referral to a neurologist. Just my thought.

 
Old 09-16-2009, 05:24 AM   #7
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Re: Shortness of Breath, No Answers After 5 Months

Update: I went to my pulmonologist yesterday. We went for a walk around the office and oxygen saturation went down to 83%. Last week I had a scare on the treadmill when my hr went down to 79. Ended up in the ER where they found nothing but an enlarged thyroid.

He is talking about Intrapulmonary arteriovenous shunting? I've been googling but everything I found is like in medical journals/study cases and it's hard to understand. Everything I've read is telling me that it's fatal? I don't know. Needless to say I'm freaking out.

Anyway, I can't be treated in my city. My hospital isn't equipped to deal with it. He's sending me to UPMC in Pittsburgh. He said he's gonna talk to a pulmonologist he's working with there for another patient and give him my records personally so we can get a move on faster. I'm waiting by the phone to see when I'll be leaving.

 
Old 09-17-2009, 09:08 AM   #8
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Re: Shortness of Breath, No Answers After 5 Months

Have you ever had a sleep study done? O2 desaturations at night can carry over the next day as well. You may have sleep apnea. I wasn't having the exact symptoms you are, but I was definitely having breathing difficulties during the day.

It's something to think about anyway. Ask your doctor to do a sleep study. If you do have apnea, wearing a CPAP mask EVERY night will start making you feel better. It literally has saved my life!

 
Old 09-17-2009, 11:28 AM   #9
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Re: Shortness of Breath, No Answers After 5 Months

I've had a sleep study. Sat levels fall to 80% several times during the night. But I don't have sleep apnea. I don't snore. I DO talk in my sleep which amuses my husband to no end. lol My oxygen levels go down during the day as well. Using an oxygen tank doesn't work for me as I have plenty of oxygen going in. That's not the problem. The problem is that its not getting diffused correctly in my blood.

Last edited by Dragonomine; 09-17-2009 at 11:29 AM. Reason: darn keyboard letters moved on me

 
Old 09-26-2009, 08:19 AM   #10
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Re: Shortness of Breath, No Answers After 5 Months

I'm going to Pittsburgh to see a critical care pulmonologist on Friday. I'm getting a little nervous. It's just sort of hitting me that people who are really REALLY bad get taken to Pittsburgh to be treated.

I think another problem is that I've been googling low oxygen saturation and coming up with death, death and more death. It's true that ignorance is bliss because I wouldn't have been as freaked out if I wasn't combing the internet.

Well, at any rate, I'll let all of you know how it goes over there when I get back.

 
Old 09-30-2009, 09:05 AM   #11
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Re: Shortness of Breath, No Answers After 5 Months

Wishing you all the best on Friday! I'll be thinking of you. I've been going thru the same thing, and am anxiously awaiting some kind of answer. My problem started in April, and I've been in and out of the hospital twice since then. The doctors panic when my oxygen saturation levels dip, and slam me back in there.

Scheduled for a sleep study in December, but not at all hopeful that will resolve anything. I am having the pointing fingers syndrome, the Cardiologist says it's a lung problem, and the Pulmonologist says it's a heart problem. My doctor says (of course) it's both. But nobody listens to a plain old Internist.

My Pulmonologist did tell me to stop googling, he said that the worst case scenarios were out there, and quite a lot of misinformation. Not sure what the answer is, when the doctor's are of no help, and do not agree on anything. You are my hope, if you get an answer, be sure to share with the rest of us, and I will do the same.

I'm having the same feelings of guilt you mentioned in your first post, since smoking for many years might have led to this problem Quitting eleven years ago was the hardest thing I've ever done, and now to be faced with this? Hardly seems fair now does it. My saturation levels are pretty much the same as yours, and dip to 80% at night as well.

Lest I ramble on forever, I'm stopping now. Will be awaiting your next post, and hopefully, some answers.

 
Old 09-30-2009, 11:18 AM   #12
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Re: Shortness of Breath, No Answers After 5 Months

Thanks Sara! Yeah the internet is evil when it comes to looking up these kind of symptoms. But it's like a train wreck. You just gotta look. lol

My regular Dr still thinks it's anxiety from quitting smoking. (although the xanax that was prescribed didn't fix the SOB but it did take care of the anxiety that went with it)

My pulmonologist completely rejects the idea that it's anxiety related since it occurred when I was recouperating from pnuemonia. Right now both wrisy arteries are tingly like when you get a blood gas done, but not as bad. No idea if it's related.

 
Old 10-02-2009, 06:26 PM   #13
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Re: Shortness of Breath, No Answers After 5 Months

Okay, I just got back from Alleghany Hospital and the pulmonologist. Here's what we know for sure.

My blood gas (which hurts like hell, btw) was normal. My stress tests were very good along with some other breathing test. I then got a 2nd CAT scan. I swear I've had so much dye pumped into me that I'm gonna glow in the dark. No lung clot. So lungs good. Check. Heart good. Check.

Upon further physical examination he found that my throat and esophagus were very tight and narrowed. (now would be a good time to tell you that I've had a hiatal hernia and Schatzki ring for years)

His guess is that I have Vocal Chord Dysfunction and Obstructive Sleep Apnea. Alas, my singing career is over. Oh wait... I wasn't a singer in the first place. But anyway, since my oxygen saturation drops a LOT several times at night he's guessing that just my tongue relaxing while I sleep and going in the back of my throat is enough to block my airway and stop my breathing.

So now what? Well, he wants me to have a sleep study here in Altoona done asap. Also I can do an upper endoscopy here as well. However, he wants me back in Pittsburgh to see an ENT for a nasal endoscopy.

I think this makes a great deal of sense expecially since I've been waking up in the middle of the night choking on acid. And I could be inhaling that... and yes, could have easily caused my pneumonia.

I'm hopeful. I think we're on the right track!

 
Old 10-06-2009, 06:55 PM   #14
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Re: Shortness of Breath, No Answers After 5 Months

I understand what your going through, I also have been tested for numerous things and this Friday will be tested for VCD, I'm pretty sure VCD is the problem.

 
Old 10-07-2009, 04:08 AM   #15
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Re: Shortness of Breath, No Answers After 5 Months

Quote:
Originally Posted by Don62 View Post
I understand what your going through, I also have been tested for numerous things and this Friday will be tested for VCD, I'm pretty sure VCD is the problem.
Yeah I think it just might be a winner finally. Problem is VCD is the very last thing the doctor's look for (if at all).

 
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