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Pulmonary Hypertension Update


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Old 08-08-2017, 01:41 PM   #1
DnvrFox
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Pulmonary Hypertension Update

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.


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Old 08-09-2017, 02:51 AM   #2
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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.


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Old 08-09-2017, 04:39 PM   #3
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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!
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Old 08-10-2017, 03:01 PM   #4
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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.
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Old 08-11-2017, 04:29 PM   #5
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Always useful to have additional history. Apparently you had already sought multiple opinions and are trying to reconcile the multiple data points.

Good Luck.
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Old 08-12-2017, 12:13 AM   #6
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Quote:
Originally Posted by Hawkowl View Post
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/

Quote:
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.
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Old 08-13-2017, 03:05 AM   #7
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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.
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Old 08-13-2017, 03:28 AM   #8
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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.
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Old Yesterday, 02:18 AM   #9
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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.
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Old Today, 03:28 PM   #10
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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!


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