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I’ve been a bit busy trying to stay alive!

01/10/2012

I have always dealt with physical health problems as well as mental health issues. But, come this past May, I got knocked silly and I was out for the count. I couldn’t seem to catch my breath. Now I have had mild asthma since my teen years but this was different. No wheezing or squeaking it felt totally different. At first the doctors ran through all the different types of asthma medications in case I didn’t know what I was talking about. Then they went on to medications designed for COPD and emphysema. Still no change. X-rays were negative. I have had a productive cough for the last several years that 2 different pulmonologist have dismissed as mild bronchitis. It goes away with antibiotics but returns within a few days of finishing them. My primary care doctor went to a seminar over the summer and heard a pulmonologist talk about how he approaches unusual cases, sort of a Mayo Clinic or Dr. House investigative medicine. I went to see him and he ordered a lung ct scan. Now we were getting somewhere. My upper right lung had been taken over by something, that didn’t show on the x-rays that he had ordered the same day which was extremely unusual. (leave it to me to always be the one that does not present in a typical manner with any disease)

To complicate matters I have heart issues. He was also able to work closely with a new cardiologist to try to determine if there was any heart issue causing the shortness of breath. All the initial tests said no. Despite all the heart issues, none of those was interfering with my breathing.

So, since about September, I have had a cardiac stress test (normal, except one wall between right and left atrium that was lazy), an angiogram to see if there were blocked arteries around this area of the heart to be on the safe side,a lung function test, an echocardiogram, numerous blood test, a mail in to special lab test for a genetic lung disease which I don’t remember the name of, a bronchoscopy, referral to infectious disease dr. who did more specialized blood tests (seven vials worth), a cardio-pulmonary stress test, then a pacemaker. I am still awaiting the results on one test from the bronchoscopy for an infection that is so slow-growing that it can take up to three months to grow on the culture.

I got the pacemaker on December 21, 2011, as a result of the cardio-pulmonary stress test. The test showed that my heart was unable to beat over 104 beats per minute no matter how much I exercised. I significant portion  of why I was becoming short of breath was because my heart could not pump oxygenated blood to my lungs and muscles as fast as they needed it. In order to try to do this my heart was trying to compensate by pumping a larger volume of blood, approximately 1 1/2 times the normal amount causing my heart to enlarge. Thus the pacemaker insertion. Now, I have known for years that I would eventually need one, but I wasn’t expecting it yet especially because all the other cardiac tests had come back just fine. (typical me again)

At my 2 week check I was told that the pacemaker was pacing my heart 48% of the time, so I definitely needed it! I have a lot more energy, my husband says he has his wife back and my kids feel they have their mother back. I still get short of breath, just not as much, so the lung issue still has to be addressed.

This last test is to confirm what they belief is the infection in my lungs. It is an infection that is in the TB family, and they refer to it as a cousin of TB but it is not contagious like regular TB. It has some long name that stars with Miyo…The treatment is a 12-18 month regime of 3 different antibiotics and the success rate for curing the infection is 50-60%, less for asthmatics.

This is where I stand. I see the pulmonologist later this week, I don’t expect an answer yet, the three months isn’t up for 3 more weeks. Hurry up and wait is the game we are playing right now and I hate this game.

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