[DnvrFox]

Approaching 78yo, I am bewildered by what is happening to my body - totally out of my control. Heck, I wouldn't even know it except for the need for an ECG for a cataract surgery about a year ago - showing an abnormal heart beat. Followed up - as suggested - with an echocardiogram about 1.5 months ago - and this doc stated "Pulmonary Hypertension (PH)."

As I have not one of the 10 signs/symptoms of PH - am totally active, walk, swim, bicycle, lift weights - it threw me for a bit - then I decided I needed more expertise, and ended up at the Pulmonary Hypertension clinic at the University of Colorado Health Science Center - one of 14 similar clinics across the country for this rare and very debilitating (and ultimately deadly) disease, which destroys the right side of your heart, as it is constantly pushing too hard against the lungs.

So - many tests. I did not sleep all night during the oxygen sleeping test, and did not do great - but - heck - how can you know about your oxygen sleeping if you don't sleep?

The pulmonary function test results were not the greatest, showing decreased volume in my lungs, and the suggestion of a resistive disease. XRay showed some thickening in the inner parts of some of my lungs where the capillaries exchange oxygen/CO2.

The good news - I needed some about now - is that the nuclear medicine lung studies showed no blood clots in my lungs - important findings.

The docs at the clinic did not trust the original echo cardiogram - nor the reading, so I will be redoing that next week, along with a CT scan of my lungs.

So, right now, I am fully functional but they suspect sleep apnea. I am scheduled at the sleep clinic in a few weeks. Hate that, done it once before. I did not sleep through the last sleep test.

Doc wants me on oxygen at night, and I may have to do CPAP or something similar.

None of this is under my control. Just nature having its revenge!!

Meantime - spending a few days in the mountains with Nora, bicycling, walking, exploring. etc.

Thanks for listening!!

BTW, the doc says "Don't worry too much." He is amazed by (and encourages) my physical activity. He is also a road bicyclist. And very, very nice and seemingly highly competent - one of the top recognized experts in the USofA.

 

[Hawkowl]

Denver, from what you've said my index of suspicion for Extreme Defensive Medicine Because There Is Insurance is bumped up several notches. You say you have no signs or symptoms except what was shown on one test out of many. But your docs want to repeat the tests because "they don't believe them".

Unless there is more than what you've shared I would be searching for an opinion from an unrelated professional.

 

[cybersnow]

Denver,

Just went through something similar, but not nearly as bad. Went in for my EKG as part of my every two year cardiology check up. New doc, new hospital. Doc said EKG showed abnormal readings. Being the elect engineer that I am, I looked at the reading and said it looks like a loose lead. Nope, doc prescribed a bunch of new tests. Looked at heart, looked at lungs, talked a pout a sleep study and put a camera up my arm to look at blockage. Found two small areas with 30% blockage but but nothing else. Wanted to run even more tests. I said that I feel good, sleep well, and regularly sprint till my heart rate is over 90% max with no pain. Doc prescribed a bunch of medicines. Changed hospital to one in Boise ID, saw different cardiologist...she took me off the meds, ran another EKG and sent me off to ride my bike.

Go see a different Doctor!

 

[DnvrFox]

Thanks so much for your thoughts. This doctor is the 2nd doctor giving an opinion. This is a deadly condition if not treated correctly and not diagnosed correctly. So I'm sticking with this Doc and the processes that we are in.

 

[Hawkowl]

Always useful to have additional history. Apparently you had already sought multiple opinions and are trying to reconcile the multiple data points.

Good Luck.

 

[DnvrFox]

Always useful to have additional history. Apparently you had already sought multiple opinions and are trying to reconcile the multiple data points.

Good Luck.

In a previous thread, which you likely missed, I documented in some detail the experience with the first doctor. I am now with one of the 14 designated clinics in the USofA for diagnosis and treatment of this rather rare disorder, and am working with the head of the clinic, who is a national expert in this field.

https://phassociation.org/patients/aboutph/types-of-ph/

Pulmonary arterial hypertension (PAH) is a chronic and currently incurable disease that causes the walls of the arteries of the lungs to tighten and stiffen. In someone with PAH, the right side of the heart has to work harder to push blood through narrowed arteries in the lungs. Eventually, the extra stress causes the heart to enlarge and become less flexible, compromising the heart’s ability to push blood out of the heart, through the lungs, and into the rest of the body.

Ultimately, it is fatal.

I may not have that type of PH, I may not have PH at all, I may just be in the early stages. Diagnosis and subsequent treatment modalities require much testing. IF I do have it, and left untreated, it is likely that I will lose endurance, develop swollen legs, etc. However, if it is caused by sleep apnea (which is one of the more treatable causes - causing the heart to work harder every night to provide oxygen to the body) then it can be attacked.

So, two more tests and I should be better informed. Possibly a 3rd, depending on the results of these two. Then also, likely a "sleep study" Aarrgghh!

This is not something I can brush off lightly, claiming MD error or equipment malfunction. There have been three separate ECGs - all showing heart malfunction and read by 3 different docs. Something is going on.

 

[newleaf150]

I wish you all the best of luck and science in figuring this out, Dnvr. Your references to the sleep studies remind me of a story I ran across which details a study which appears to show that most humans, faced with a new and unusual place to sleep, only 'half sleep' in the sense that half the brain remains more awake and aware while the other half slumbers.

This leads to less than optimal rest for the first night in a new place, but also means you're more alert to threats. Many who've slept in strings of motels, both for a single night and a single motel for multiple nights, have noted the difference. The second night in a new place is usually much more restful than the first. I've noticed it myself, even before reading about the research. I can only imagine that a sleep lab would be that much more unsettling. Indeed, the article claims that early sleep researchers often threw out the first night's results as unusable for this reason.

If the goal is to observe 'natural' sleep, it seems that at least some evidence indicates more than one night's observation is in order. I'm sorry for that conclusion in light of your stated and utterly understandable dislike of being literally watched while you sleep . At the same time, you're a great guy who has a lot yet to contribute to the world. Seriously.

If a couple nights' discomfort will give the medical types better data on what's actually happening beneath your skin, it might be worth trying. Please feel free to curse and hate me if you end up pursuing this avenue, but it seemed germane to the discussion. However you end up choosing to deal with the issue, I'm pulling for you. You've inspired me a great deal, and I know I'm not alone in that.

 

[DnvrFox]

The situation at the moment is I don't have all the info I need to make an informed decision. The next few tests should fill in the voids .

As far as the sleep study, they are expensive as someone must watch all night and get paid for that. There are some simpler home devices which may work. I will find out in a couple of weeks.

Thanks for your thoughtful input and info. Appreciated.

 

[DnvrFox]

More info (CT high resolution scan and 2nd Echo Cardiogram) indicates "Interstitial Lung Disease" causing my lungs to not get air through the alveoli (like a film) causing my heart to have to push harder to oxygenate my body.

And two months ago I thought I was in great shape!

So, I have been referred to the pulmonary clinic for more studies, etc.

Not great news.

 

[cybersnow]

DnvrFox, First my wishes that everything turns out OK!
Is it a lung problem or a heart problem? (Sorry, not a medical person). Please keep us informed of your progress in this and know we are rooting for you!

 

[DnvrFox]

DnvrFox, First my wishes that everything turns out OK!
Is it a lung problem or a heart problem? (Sorry, not a medical person). Please keep us informed of your progress in this and know we are rooting for you!

They are interrelated

Problems with the lungs aerating because of damage/disease (Interstitial Lung Disease) cause the heart to work and pump harder, eventually destroying the right side of the heart (Pulmonary hypertension).

 

[DnvrFox]

The latest is a diagnosis of Pulmonary Diffuse Ossification - literally bone deposits in my lungs, a condition so rare there is no treatment protocol. High res CT scan.

But I did 15 mile mtn bike ride

 

[rola643]

The latest is a diagnosis of Pulmonary Diffuse Ossification - literally bone deposits in my lungs, a condition so rare there is no treatment protocol. High res CT scan.

But I did 15 mile mtn bike ride

Bone deposits... on your lungs???

 

[DnvrFox]

Bone deposits... on your lungs???

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3737610/

No - bone deposits IN your lungs.

"Abstract


Dendriform pulmonary ossification is a rare form of diffuse pulmonary ossification that is usually detected incidentally on chest radiographs or chest computed tomography (CT) imaging. In this article, we present two patients who were incidentally found to have dendriform pulmonary ossification on chest imaging. The article will present the history and imaging findings of these two cases and then review the clinical, histological, and radiographic manifestations of dendriform pulmonary ossification.
-------------------------------------------------------------------------

"Diffuse pulmonary ossification is a chronic process characterized by progressive metaplastic ossification. Since patients with this condition are usually asymptomatic, the diagnosis may only be made on autopsy or surgical pathology specimens.[1] Two forms of diffuse pulmonary ossification are described in literature: The relatively more common nodular type and the rarer dendriform type. We report two patients who underwent chest computed tomography (CT) imaging in whom we incidentally found dendriform pulmonary ossification (DPO)."
"

 

[DnvrFox]

Have an appointment with the interstitial lung disease docs at the University of Colorado Health Sciences Center on September 7.

I now have an appointment with the docs at National Jewish Hospital here in Denver on Octpber 5th. National Jewish is consistently rated as the best pulmonary hospital in the United States (and world) - along with the University of Colorado - so I am getting the best treatment available in the world, right where I live.

 

[DnvrFox]

After many, many tests, it appears that

1. According to the docs, etc., at UCHSC, I have Stage 1 Idiopathic Pulmonary Fibrosis (IPF) along with Pulmonary Hypertension, and perhaps a tiny bit of Pulmonary Dendriform Ossification (not confirmed). Idiopathic means they don't know the cause.

2. So far, the IPF has not affected my life in any way (except for a jillion MD and test appts!!). Although this is a progressive disease, the progression can be very slow or fast. In my favor are that I have never smoked, and keep in top cardio condition.

3. The Pulmonary Hypertension seems to not have affected my heart functioning at this time, and it is not number one on the "We need to fix/treat this" list. Likely caused by the IPF causing my heart to work harder to get oxygen into my system.

4. There are two brand new (and VERY EXPENSIVE) drugs out just since 2014, which appear to slow the progression. I don't know whether or not the insurance will cover it, but believe that UCHSC has ways to get the drug at a reasonable cost - we shall see. They want me to start on these.

5. I will be seeing National Jewish Hospital (top in the country along with UCHSC) on October 5th, and it is likely that they will confirm the diagnosis. But the diagnosis is not ABSOLUTELY POSITIVE and could change.

6. I will be doing a swallow test to see if I am aspirating from my stomach into my lungs Oct 11th. Also, some more blood work (they could not get much blood out of me at the last attempt.)

I appear to have many useful years of life ahead of me, unless there is some drastic change.



Denver Fox, Ed.D.

 

[rushlake]

Keep being aggressive staying on top of this so you know for sure and can get the proper treatment as soon as possible. :thumbsup:

 

[Dos_Ruedas]

Dnvr,
Like rush said, keep at this and follow orders.

About the new drug.
What should you expect, when it comes to side effects?
Stilling4U.

 

[DnvrFox]

Dnvr,
Like rush said, keep at this and follow orders.

About the new drug.
What should you expect, when it comes to side effects?
Stilling4U.

Typical possible side effects. I never have the ones they claim, I always seem to make up my own. We will have to try and see what happens. Tx for the concern.

 

[DnvrFox]

Got in a swim and a 1.5 hour bicycle ride yesterday. I also got the dreaded but vital pills for slowing down the progress of my currently incurable Idiopathic Pulmonary Fibrosis. Dreaded because one side effect is diarrhea. Vital because they can slow the progression by up to 50%. I will start the pills tonight, as I don't want to be "inconvenienced" during my singing practice this morning. These babies run $8,000 for a 30 day supply of 60 pills, or $133 per pill.

So, a new phase of my life. Do you suppose this is one of the phases Gail Sheehy writes about in "Passages?"

Well, everyone - have a great day!