misdiagnosed

[hairaffair]

i was in hospital in 2011 with double pneumonia when I had stopped smoking using water vapor cigs that it when i got a bacteral infection. I was put on antibotics and sent home, I always had problems after that sometimes not being able to get a deep breath or yawn they had did a ct scan that came back normal. now 6 years later same problem caught a chest infection in december taht I di not treat trying to fight it off naturally and it got worse, so finally in Feb went to doctor and my husband ask him if I could have asthyma he said I dont know we will put her in for a day run test cause xray showed clear. Get out come home called his office and ask what my ct scans showed he rudly said emphysema I cant talk im slammed youll have to come by my office and hung up on me. I cried my eyes out I was thinking I have to raise my baby girl, I went to hospital and got all my medical records and in 2011 he had diagnosed me with asthyma and bronchitis that I have never been treated for not to mention a history of copd. I was flippen out. So I had to go to another doctor Ive never been to in order to get a referral to go to a specialistand he didnt want to give me one cause he wanted to treat me for it. It is a small town and I'll leave it at that. So finally I get one in lexington at Baptist Health and they are great I must add, she did a spiromatory test that was really good fev 1 was 119 fev1/fvc was 95 anyways she oxygen was 100% she came in to office sat me down and said you do not have copd I was so happy she said you do however and when I say this to you it is just a discription as if I was saying my hair is brown emphysema like in other words your lungs are in great shape your breathing issues are not from your lungs there are two tiny very very mild places but they have been that way since 2011 according to my scans from then till now they have not changed and they were there then also. I would say from the pneumonia she also said if I continue to stay active and take care of my lungs I could come back in 20 years and they could look the same as now. I was so relieved If anyone is not sure on what a doctor tells you always get a second opinon I feel for each of you it is so hard to get such awful news and sometimes its not real. May god bless each of you stay active and eat right and keep an strong mind

[Ldycatcoach]

I would recommend that you get a "home" spirometer in order to keep track of you fev1 and PFV. (They sell them on Amazon.com) That way you can monitor your values and be proactive. When my FEV 1 was 102, I was put on O2 24/7. I declined rapidly. I've now had a double lung transplant and my FEV 1 is 256. If you keep track of your numbers yourself, it gives you peace of mind, reduces stress, and helps to eliminate unwanted surprises and diagnosis's. Everytime we get chest infections or pneumonia, we have new lung scarring. Try your best to take precautions to stay well! May God bless you and guide you in your daily care. You want your good news to stay GOOD!

[hairaffair in reply to Ldycatcoach]

Thank you so much I will check in on that. Was your very mild and how long before changes ty

[Ldycatcoach in reply to hairaffair]

I was first admitted to the hospital in Dec 2011 with pneumonia and a few "glass-like shards" showing on the CT scan. I then was readmitted in Feb 2012 because the pneumonia reoccurred. PFT's and a bronchoscope were done while I was in the hospital that time. There was no obvious diagnosis. I was released but continued to have shortness of breath on exertion, so my pulmonologist referred me to a pulmonologist specializing in Alpha 1 Antitrypsin Disorder at UF Health since I tested as a MZ carrier. However, even though the MZ has made me more susceptible to lung disorders (I never smoked nor was I around second hand smoke), my Antitrypsin levels were good, so we had to look elsewhere. Various medications - high doses of prednisone, inhalers (Symbicort, Spiriva, and ProAir) and a nebulizer helped to relieve symptoms, but my FEV 1 slowly continued to decline. I had an open lung biopsy in May 2013 in order to try and get a diagnosis. In Sept. 2013, it was determined (after extensive lab monitoring) that I had Bronchiolitis Obliterans. I was given the unnerving news that my prognosis was about three years if I continued to take the control medications, and exercise extensively. It was also recommended that I be placed in the lung transplant program. Working diligently and following orders, my condition stabilized with an FEV1 of 102. I was hospitalized again in Dec 2013 with pneumonia and was sent home with O2 24/7. I recovered and stabilized again (with O2) until Dec 2015. I once again was hospitalized with pneumonia. My FEV1 dropped to 96, but I continued to be active on the O2. However in July 2016, I had my first pneumothorax incident. Another occurred in Sept and my FEV1 dropped to 82, so my lung transplant team informed me that it was time to be evaluated before I was too ill to pass the evaluation. I was evaluated in late October 2016 and listed on November 28th. My first call came November 29th - way too soon; I was not mentally nor physically prepared! My team told me to pass. I was then called again on December 31st and was transplanted on January 1st right after midnight - Happy New Year! COPD is just a cover diagnosis for many lung disorders, so that is why I recommend that you need to be your own advocate and be proactive. You know your symptoms and if the medications are helping you. If not, inform your doctors - don't let the condition advance when it can be treated ( not cured - but treated).

[hairaffair in reply to Ldycatcoach]

I am not on any meds they said I didn't need any? she said i did not have copd should i go to another specialist? I went there because I needed to know what I had my last doctor has me with several things on my chart I never was treated for didn't know this till I asked for a copy of my records. she did say I had emphysema like and that was just a description I am really confused now

[Ldycatcoach in reply to hairaffair]

At this point, all I would do is purchase a home spirometer and oximeter (reads O2 level from fingertip). Keep a record of your readings and if you continue to experience shortness of breathe upon exertion, notice your numbers are dropping, or keep getting chest infections or pneumonia, you will have documentation to take with you to your doctor. I would just exercise as much as possible and monitor my numbers. You will know when you need additional help such as inhalers. I'm sure the last specialist you saw has an understanding of your condition and will guide you (especially if she knows you are being proactive). Relax and enjoy life! Make everyday count!

[hairaffair in reply to Ldycatcoach]

My fev 1 is 119 predict is that good

[hairaffair]

Ty