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Still moseying along.

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Still moseying along.

Old 05-26-18, 07:09 AM
  #1  
gobicycling
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Still moseying along.

Over the past year+ (now approaching 79yo) I have been diagnosed with

Idiopathic Pulmonary Fibrosis (supposedly deadly in 2-3 years)
Aspirational Pulmonary Fibrosis
Dendriform Pulmonary Fibrosis (bone material in the lungs)
Pulmonary hypertension (nothing to do with hypertension - enlargement of the heart and right Aorta)
Extremely low throat motility

and have had numerous CT, MRI, heart echocardiograms, blood tests, lung tests, etc.

I am pleased to report that, in spite of all the dire predictions, I have had no loss of function that I can measure. In fact, on my "trial" mtb single track hill, I am able to go in the middle chain ring as opposed to the small CR. I feel (and can measure) no loss of function in any area. I have lots of energy, ride many miles, swim, walk, do resistance exercises, garden, etc.

I am tired of being poked, prodded and measured, and have canceled several appts., and am reducing my medical "visibility and participation" to as low of a level as I can reasonably do. I have stopped the O2 at night, and gave back the CPAP - which was doing no good.

I measure my weight, oxygen saturation, BP and Heart rate daily. Here are the results for several months.

Results? Averages over several months:
Oxygen saturation (SO2) 97%
BP 118/74
HR 64
Weight 177 lbs (I am 5'10.5 inches tall - used to be 6 feet ) - Recently purposely dropped to about 173 lbs.
Attached is a chart
Attached Files
File Type: pdf
Vitalspdf.pdf (18.2 KB, 5 views)

Last edited by gobicycling; 05-26-18 at 08:05 AM.
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Old 05-26-18, 07:38 AM
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From all outward appearances, you're healthier than I am and I'm five years your junior. Keep up the good work and positive attitude.
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Old 05-28-18, 07:39 AM
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If you're going to go kicking all the way, you may as well put a bike between your legs and turn it into a ride!

go, Go, GO!
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Old 05-29-18, 08:33 AM
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355Mono
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Were you having symptoms, that lead to a diagnosis of fibrosis? Did they quickly diagnose you? How did they make the diagnosis, CAT scan, biopsy? Curious about the process, and hope you stay in good shape for a long time. Sounds like you will.
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Old 05-29-18, 06:21 PM
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Rock on!!!!
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Old 05-29-18, 10:03 PM
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I believe moseying is not quality without root beer now and then. Enjoy the mosey.
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Old 05-29-18, 10:44 PM
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I like your attitude and I like your results. Keep on truckin', baby.
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Old 06-01-18, 08:39 AM
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gobicycling
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Originally Posted by 355Mono View Post
Were you having symptoms, that lead to a diagnosis of fibrosis? Did they quickly diagnose you? How did they make the diagnosis, CAT scan, biopsy? Curious about the process, and hope you stay in good shape for a long time. Sounds like you will.
I needed a EKG for an cataract/IOL procedure. The EKG was not normal, and I was advised to get an echocardiogram in about 6 months, which I did. Echo showed some pulmonary hypertension possibility, which led to CT scan, MRI, etc., etc., etc. and even more.

The read on the CT scan was idiopathic pulmonary fibrosis (IPF). Went to national Jewish (#1 in nation for pulmonary) and they read it a bit different as Dendriform Pulmonary Ossification, with possible IPF

I have had more tests than one could imagine. But, without the need for the EKG for the IOL, I would be totally in the dark about my multiple "diagnoses" - simply enjoying life.
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Old 06-03-18, 02:20 PM
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Thanks for the info. Maybe having all that information is a good thing, even if you you're not symptomatic. Well, it stopped raining, time for an easy ride. We're all fighting chest colds!
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Old 06-16-18, 06:27 AM
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gobicycling
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GREAT NEWS!!!!!!!!!!!!

After messing around with a couple of other cardiologists – who wanted to run more and more tests and mess with me – I finally visited the cardiologist I had seen 13 years ago when I was 65yo and had AFib for a year, before he and I decided I should have an ablation by the best electrophysiologist in the US – Andrea Natale, and I cured my AFib.

So, my EKG a couple of years ago showed an abnormality with the possibility of pulmonary hypertension (a serious condition not related in any way to one’s BP). And, today, the revisited cardio said things like I had an excellent capacity for exercise, BP was great, weight appropriate, etc., etc., and I was in excellent heart shape overall and to see him in a year. No more heart tests. I do have what is call a left anterior fascicular break which makes my EKG abnormal, but he said nothing to worry about.

Nice to be considered as a whole person, and not just one specific part.
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Old 06-17-18, 07:14 PM
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That's groovy, man. Keep pedaling
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