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Good news

Old 07-18-18, 04:21 PM
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gobicycling
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Good news

Good News

Sometime back I wrote about a devastating diagnosis of me, Idiopathic Pulmonary Fibrosis - a progressive disease leading to less and less lung function, and eventually death within a few years. I have been assured in writing from the UCHSC pulmonary doctor that this is what I had and to accept it.

However, I never had a single one of the symptoms of IPF, and I referred myself to National Jewish last year. I kept doing better on my Nat Jewish breath tests and my "6 minute walk", etc. I have also increased my exercise - bicycling, swimming, walking, weight lifting, stretching - and can measure my progress regularly.

So, today, I got the word from a very nice doc at Nat Jewish that it was most unlikely that I have IPF Instead, I have Dendriform Pulmonary Ossification (bone material being deposited in my lungs) - a very, very rare condition - may 200 folks in the world - including, amazingly, apparently my older sister.,

The good news - DPO really has no significant effect on performance, etc. and we can ignore it.
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Old 07-18-18, 04:43 PM
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That is fantastic news!!!
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Old 07-18-18, 04:56 PM
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Buy that nice doctor some lunch! They deserve it!
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Old 07-18-18, 08:15 PM
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AWESOME !!!

Originally Posted by Rollfast
Buy that nice doctor some lunch! They deserve it!
Could do that and n+1.
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Old 07-20-18, 01:18 AM
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Excellent news! That must be a huge relief.
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Old 07-20-18, 02:50 PM
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That is outstanding news. I hope you can get back on your bike soon.
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Old 07-20-18, 07:58 PM
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Originally Posted by jskash
That is outstanding news. I hope you can get back on your bike soon.
Thanks. I have never been off the bike. I never had any symptoms, nor did it slow me down any - which is one of the reasons they decided I did not have IPF.
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Old 07-22-18, 08:48 PM
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Originally Posted by gobicycling
Thanks. I have never been off the bike. I never had any symptoms, nor did it slow me down any - which is one of the reasons they decided I did not have IPF.
I think I read about this earlier.

Was this just picked up on a routine X-Ray? It seems like quite a dire diagnosis for a person that is asymptomatic.
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Old 07-28-18, 03:51 PM
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Originally Posted by CliffordK
I think I read about this earlier.

Was this just picked up on a routine X-Ray? It seems like quite a dire diagnosis for a person that is asymptomatic.
Failed EKG for cataract surgery >
Echocardiogram (2) >
Suspected Pulmonary Hypertension (not in any way related to hypertension) >
High Resolution CT Scan to find cause, among other tests >
All sorts of breathing and other tests tests >
Diagnosis of beginning IPF >
Self referral to National Jewish Hth - top in nation for pulmonary
Reread of HR CT Scan and interpretation by national expert relating to rare DPO >
Failed to get worse - in fact got better >
Diminishing of IPF diagnosis as opposed to DPO-very unlikely to have IPF; current cardio not concerned about Pulmonary Hypertension.
I do have a "Left Anterior Fascicular Block" relating to heart electrical flow - but of no major concern at this time.

Last edited by gobicycling; 07-28-18 at 03:54 PM.
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Old 07-28-18, 04:05 PM
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Interesting history... head into get the eyes tuned up and being told that you were dying.

Have you gone in for the cataract surgery yet?

Have you had Swine Flu with really bad bronchitis or pneumonia in the last couple of years?

Any changes in cycling habits?
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Old 07-29-18, 11:14 AM
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Originally Posted by CliffordK
Interesting history... head into get the eyes tuned up and being told that you were dying.

Have you gone in for the cataract surgery yet?

Have you had Swine Flu with really bad bronchitis or pneumonia in the last couple of years?

Any changes in cycling habits?
Goodness - are you a doc?
Cataract surgery was a couple of years ago - this has dragged on for about 2 years now etc. No Swine flu - in fact, I have had no colds, flu, fever, etc., for many, many years.. Bicycling, swimming, walking, resistance training, stretching and eating well now as I have also for many years.
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