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boredsilly
@boredsilly

Posts: 20
Joined: Dec 06, 2017

On going shortness of breath

Posted by @boredsilly, Dec 6, 2017

Had cardio inversion, pacemaker, various inhalers, nebuliser/w/abutarol. ETC!! Dr. says no more to do, see a pulmonologist!

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REPLY

Hello @racerjon

I have been thinking about you. I know that you have been frustrated and at a standstill in getting treatment for your ongoing shortness of breath.

How are you doing now? Have you made any progress in seeking a second opinion or getting any more assistance?

I look forward to hearing from you.

Teresa

@hopeful33250

Hello @racerjon

I have been thinking about you. I know that you have been frustrated and at a standstill in getting treatment for your ongoing shortness of breath.

How are you doing now? Have you made any progress in seeking a second opinion or getting any more assistance?

I look forward to hearing from you.

Teresa

Jump to this post

Thank you so much for the thoughts and kind words. I had the right heart cath done and it did not show PH. I believe there is more going on that I've been told. And I know this happens to people. I don't know why a doctor won't tell a patient everything. I was told for years I never had a heart attack. Then I've had doctors come in to my hospital room and ask me "when did you have your MI"? So I finally called my cardiologist and told them I was tire of sounding stupid when I would say, out of being told so many different things, that I didn't know if I had an MI or not. They researched all my records they have and called the next day and tell me "Oh yes, you had a heart attack back in 2009"! I'm At the point I don't think I believe anyone anymore.

@hopeful33250

Hello @racerjon

I have been thinking about you. I know that you have been frustrated and at a standstill in getting treatment for your ongoing shortness of breath.

How are you doing now? Have you made any progress in seeking a second opinion or getting any more assistance?

I look forward to hearing from you.

Teresa

Jump to this post

I found out I had a heart attack also, one day before undergoing open heart surgery (aortic valve replacement, mitral valve repair and CABG x 3). One has to always be vigilant and have a strong, knowledgable advocate pushing for your best interests. Stuff is always missed in communication between doctors…and between doctors and lower staff…always. I am happy to have survived and respect my surgeons…but communucation between humans is always flawed…. I count at least 4 major miscommunications during my overall 2 month experiences…some with Mayo staff..some with doctors/staff/hospitals outside of Mayo. Lots of hands..ears…minds…distractions. Scary stuff. Be vigilant. I question all people and all conclusions..it makes me appear to be a malcontent and lots of excuses are made when errors are found. No medical person stands up and admits error of any consequence.

@hopeful33250

Hello @racerjon

I have been thinking about you. I know that you have been frustrated and at a standstill in getting treatment for your ongoing shortness of breath.

How are you doing now? Have you made any progress in seeking a second opinion or getting any more assistance?

I look forward to hearing from you.

Teresa

Jump to this post

Hello, I'm wondering how you were able to get your doctor to do a right heart cath. I have had persistent episodes of shortness of breath and chest discomfort ever since I had a respiratory infection in 2006 that I believe affected my heart. I have never been able to build any exercise tolerance and my pulse ox went from 98% to 94%. I feel horrible the day after exercise, sometimes for weeks, I have also been unable to fly in a plane without terrible shortness of breath and chest pressure. I've had many tests over the years. I feel my symptoms may be due to pulmonary hypertension but doctors will not order a R heart cath because they don't see evidence of P.H. on my echo. Did you have evidence of PH on other tests? Is that why they did the R heart cath?

@cognac

I, too, endure shortness of breath. How do you get things done around the house/apartment?

Jump to this post

Hello. How wash the chronic diastolic insufficiency diagnosed?

@hopeful33250

Hello @racerjon

I have been thinking about you. I know that you have been frustrated and at a standstill in getting treatment for your ongoing shortness of breath.

How are you doing now? Have you made any progress in seeking a second opinion or getting any more assistance?

I look forward to hearing from you.

Teresa

Jump to this post

Hi Mary. It was my pulmonologist who ordered it. After all the heart caths, stents, angioplasty's and a pacemaker, I was still not breathing worth a darn. I had a pulmonary function test and couldn't find nothing. The doctor was there at the end of the test and was amazed that, as I was gasping for breath and couldn't breathe, my O2 stat never dropped below 95%. She shook her head and said I have no idea what could be wrong. She then said I notice all your heart caths were on the left side. An right heart cath will tell us if it is PAH. I never showed any signs of it either on an Echo but she said this is the only possible answer since everything else possible has been tried. (I've tried every medication available, have been through 36 heart caths, 3 angioplasty's and have 13 stents and a pacemaker). So she had it ordered and to her (and my surprise) it was OK. Have you had a pulmonary Function test done? If not, please have that done. That can tell the doctor a lot. Please keep in touch and let me know how you make out.

@hopeful33250

Hello @racerjon

I have been thinking about you. I know that you have been frustrated and at a standstill in getting treatment for your ongoing shortness of breath.

How are you doing now? Have you made any progress in seeking a second opinion or getting any more assistance?

I look forward to hearing from you.

Teresa

Jump to this post

Mary, last year my pulmonologist also a bronchoscopy. She cleared out some stuff that was in my lungs and airways but it wasn't bad enough that it improved my breathing.

@hopeful33250

Hello @racerjon

I have been thinking about you. I know that you have been frustrated and at a standstill in getting treatment for your ongoing shortness of breath.

How are you doing now? Have you made any progress in seeking a second opinion or getting any more assistance?

I look forward to hearing from you.

Teresa

Jump to this post

The Echo is the standard they use and if it shows that the pressure is high then they do a right heart cath, have they done a CT of your lungs?

@hopeful33250

Hello @racerjon

I have been thinking about you. I know that you have been frustrated and at a standstill in getting treatment for your ongoing shortness of breath.

How are you doing now? Have you made any progress in seeking a second opinion or getting any more assistance?

I look forward to hearing from you.

Teresa

Jump to this post

Hello racerjon,
Thank you for your reply. I'm sorry you still don't have an answer to your shortness of breath. At least they have ruled out PAH with the right heart cath. I have read that PH is difficult to diagnose and treat. It's amazing that your O2 sats never drop below 95% while you are having difficulty breathing. I hope you find some answers soon. Have you ever had a stress MRI? I recently had one. It was normal so it did not reveal what could be causing my symptoms. I have had many tests over the years but I agreed to the stress MRI because I had never had one. Has your doctor considered that? I feel my symptoms of fatigue, shortness of breath and exercise intolerance since a respiratory infection in 2006 could be from PH but my doctors have done yearly echos and refuse to do a R heart cath because the echo does not suggest PH. My O2 sats are 93-95 since the event in 2006. They used to be 98-100.The discomfort when I fly in an airplane is so awful that I have not flown in 12 years. My PFT's have been normal and I've had 2 normal pulmonary stress tests (last one 5 years ago) so they want to do one now but I am reluctant to have another test that shows nothing. My symptoms are worsening so maybe something will show this time. I'm wondering if you or anybody out there that is reading this can comment on the difficulty flying. I have read that it is associated with PH. Again, racerjon, I am so sorry about your ongoing symptoms and will share anything I can that may be of help to you. I have been researching things whenever I get a free moment.

@hopeful33250

Hello @racerjon

I have been thinking about you. I know that you have been frustrated and at a standstill in getting treatment for your ongoing shortness of breath.

How are you doing now? Have you made any progress in seeking a second opinion or getting any more assistance?

I look forward to hearing from you.

Teresa

Jump to this post

Hello Charlie,
Thanks for your reply. I've had yearly echos and I am told they will not do a R heart cath because the echo does not suggest PH. My symptoms suggest PH but I don't know how to get a doctor look for it. I've had a few CT of the lungs over the years and was told they were normal.

Have they done arteriogram to look at the arteries to the heart/

@hopeful33250

Hello @racerjon

I have been thinking about you. I know that you have been frustrated and at a standstill in getting treatment for your ongoing shortness of breath.

How are you doing now? Have you made any progress in seeking a second opinion or getting any more assistance?

I look forward to hearing from you.

Teresa

Jump to this post

Hi Maryd. Thank you for your answer. The answer is yes, I did have a stress MRI and that showed nothing also. I at a total loss. People think it's in my mind because they can't find nothing. But the scary part is that it is getting worse. I've told the doctor many times that the chest pain does not worry me, especially since I have unstable angina. So I'm going to have chest pain but not being able to breathe is sometimes sheer terror. I just don't know what to do anymore.

@hopeful33250

Hello @racerjon

I have been thinking about you. I know that you have been frustrated and at a standstill in getting treatment for your ongoing shortness of breath.

How are you doing now? Have you made any progress in seeking a second opinion or getting any more assistance?

I look forward to hearing from you.

Teresa

Jump to this post

Hello racerjon,
Have you ever had a R heart cath WITH pulmonary angiography? " Pulmonary angiography performed during right heart catheterization is still regarded as the most definitive test for pulmonary embolism, although in most cases the diagnosis can be secured by radioisotope lung scanning and spiral CT." I"m not certain that they always do angiography during the R heart cath. It there a possibility that you are "micro-emboli" that are not being seen by other tests? This would certainly cause shortness of breath. I'm thinking that with your history you are already on blood thinners? Also, have you seen a hematologist? Certain blood disorders can cause shortness of breath and may have nothing to do with our heart of lungs.

@hopeful33250

Hello @racerjon

I have been thinking about you. I know that you have been frustrated and at a standstill in getting treatment for your ongoing shortness of breath.

How are you doing now? Have you made any progress in seeking a second opinion or getting any more assistance?

I look forward to hearing from you.

Teresa

Jump to this post

I'll have to find out Mary D. I'm not sure if they ever have or not. Yes, I'am on blood thinners but no, I've never been to a hematologist

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