Newbie... Breathing at Last!

Hi Folks,

After 14 years and many doctors, since starting BIPAP theraphy with supplimental oxygen 3 months ago, I can finally breathe while lying down! It took a long journey with little help form doctors until I became assertive by educatiing myself through research and forums like this. I think some of the things I learned might be helpful to those who are living with multiple chronic health issues affecting their breathing.

I have congestive heart failure since 1999, COPD since 2007 and Sleep Apnea first diagnosed in 2009. Unfortunatly, I did not follow through and did not obtain theraphy for the Sleep Apnea until 2013.

1999 - Would wake up at night and could not breath. Went to energency room and was addmitted for congestive heart failure and put on all the usual meds to treat heart failure. I still had breathing difficulties sometimes at night - no volume when lying down. Continued having to visit the ER several times during the next few years. I asked the cardiologist why I could not breath well at night and he replied "I do not know". I asked my family doctor and he said I might be developing COPD and prescribed Albuteraol.

2007 - The same story continued, except the COPD diagnosis became official.

2009 - While hospitalized for a different reason, an alert nurse started taking my SP02 in the middle of the night and found it very low. The family doctor had me do an overnight sleep study and I was diagnosed with OSA. Then I suddenly had to move to another state and find new doctors.

2010 - New cardiologist and family doctor suggested changing my beta blocker from Toprol to Coreg. After a week I could hardly breath at all! I looked up both medications and discovered they could complicate COPD and are not recommended for patients with COPD. Neither doctor seemed to have a clue about this. I stopped taking beta blockers, with the doctors knowledge. My breathing improved dramatically! I bought a pulse oxiometer and started checking at various times.

2013 - I checked my SPO2 during the night and found it to be 73%. Made an appointment with my GP and told him I wanted to change my COPD treatment and follow through with the BIPAP. He put me on Advair and within 2 hours of the first dose my lungs opened up dramatically! My SPO2 starting rising over the next few days and now stays in the 90's when resting. Had a new overnight sleep study, got my equipment and started using it every night. Despite the beginning agrivation of getting used to the mask and theraphy, I actually remember one night when I realized how great it was to be able to breath in comfort when lying down. I also found that if i started my BIPAP therapy while sitting for a few minutes before lying down, I did not get the "drowning sensation" that many CHF patients get from edema when first lying down.

I would not want to be without my BIPAP now!!!!!

So, I offer the following suggestions for anyone interested:

1. Educate yourself about the medical conditions you have.
2. Be assertive with the doctors treating you. Have a GP helping to coordinate your care.
3. Know the drugs you are taking, Look them up!
4.Follow through with your doctors advice, but do not accept it blindly.

I know this is long... thanks for reading!

Tom

It sure sounds that you have been down a rough road, but I was happy to read that you are doing better.
Welcome to the forum. Lots of information here. You are in a good place here.
I wish you well!

Welcome! --a toast to your increasingly better health!
congratulations for being a proactive participant in your health care.
(I just hate the word,"patient"; it implies passivity--which can kill you.)