OUR JOURNEYS

Patient story

Ralph Spaulding

My diagnostic journey to PH

My name is Ralph Spaulding. I am an 80 ½ year old male who received a tentative diagnosis of pulmonary hypertension (PH) after some in-office tests on Feb. 11, 2013, about one month ago. I had gone into the doctor‘s office complaining about what I considered to be a significant episode of shortness of breath several days before. I had had rather frequent episodes of shortness of breath and had been complaining about it every time I saw my doctor for perhaps six years before this episode. I first became aware of a problem when I found myself frequently running out of breath when I talked. It had become such a problem that I would have to speak and read aloud using short phrases to reach appropriate places to pause and take a breath. But this latest episode worried me because I felt I was not getting enough oxygen when I took a breath, and I had an irregular heartbeat that lasted for a couple of days at the same time. I had been previously diagnosed with a pre-ventricle contraction (PVC) which I had pretty well learned to ignore after many years of living with it. But this time it seemed to last longer than I was used to, and the shortness of breath seemed a bit more severe than I was used to. It was the simultaneous occurrence of these conditions that had me worried and caused me to call the doctor.

I fully expected to hear again that since I was overweight and had been a smoker some 30 years prior (2 to 3 packs per day while in Vietnam), I was just suffering from chronic obstructive pulmonary disease (COPD) and poor physical conditioning. I expected to again be told that I should lose some weight and exercise more. However, at this point I had a new doctor because I had changed my insurance to an HMO type of system where I had to see their doctors. I made this change not because I did not like my doctor, but because I was a bit worried about how Obamacare would impact Medicare, on which I was at that time totally dependent. As a retired military member I was eligible to join this HMO system that is funded by the Department of Defense. So I joined it hoping it would enjoy a more stable source of funding. Although I had complained to my new doctor about my shortness of breath the first time I saw him, my complaint generated no interest on his part. I assumed this was because he thought, as my former doctor had, that I was overweight, a former smoker, and apparently in poor physical condition. It was not until I went to him with shortness of breath and a simultaneous heart problem as my complaints that I seemed to get his attention. So he gave me a few tests.

The tests included an electrocardiogram (EKG), a quick examination, some blood work, a chest X-ray, and a quick walk around the office following a nurse while wearing an oxygen sensor on my finger. I did not think I was short of breath after the walk during which my oxygen level had fallen to 93% for no more than one or two seconds. I later read about the six-minute walk test, but his test was nothing like that. Looking back I do not see how the test revealed anything, but apparently that together with the other tests told the doctor I might have PH. When his medical assistant called me on the telephone to report the results of the tests, I thought she said I had high blood pressure in my heart. After a bit of internet searching, I could find little if anything relating to high blood pressure in the heart, but I found a great deal of information regarding high blood pressure in the lungs. That was where I first learned of pulmonary hypertension (PH). When I called the medical assistant back, she confirmed that it was PH she was trying to tell me about, and that the doctor wanted me to have an “echo” as the next step in the diagnostic process. By now it has been a whole month since this all started and needless to say, I am totally frustrated by the time it has taken to get this far. After 30 years in the Navy, I should be used to this hurry-up-and-wait business, but with the potential consequences of my test results I find it hard to tolerate the waiting. I go in tomorrow to discuss the results of the echo with my doctor.

Well now it’s tomorrow, and I have seen the doctor. After all the reading I had done, I fully expected him to tell me that the test showed there was significant thickening of the walls on the right side of my heart and that heart catheterization would be required to determine the actual pressure in my pulmonary artery and thereby confirm that I had PH. To prepare for this news, I asked the medical assistant for a copy of the echo report before the doctor came in to see me, even though I did not expect to be able to understand it. When I glanced through the report, I found a short summary that was mostly in English I could understand. The summary said, “The left ventricle is mildly dilated in size with a mild increase in wall thickness.” It further said the ejection fraction was “low-normal” and several other things I did not understand. I thought to myself, “Well, I guess the left side of the heart gets a bit of a workout along with the right side as it fights the PH. The rest of the report contained details of the findings for each side of the heart, and the data for the left side were repeated next. The last part of the report addressed the right side of the heart, and my thought was, “OK, here’s the bad news.” I read, “Right Atrium size is normal,” and, “Right ventricle is normal in size.” HUH??? At that moment the doctor came in and we had a long discussion about what the test meant.

He explained that the left side situation was probably the result of long term high blood pressure, which had been controlled in recent years by meds I was taking for my PVC and benign prostatic hyperplasia (BPH), all of which tended to lower blood pressure. But he did not have an explanation for the normal right side report because my chest X-ray showed an enlarged pulmonary artery and my continuing shortness of breath pointed to pulmonary hypertension. He thought COPD might be my problem, so he gave me a lung function test and proved that COPD was NOT the answer. He has therefore referred me to the cardiologist who read my echo for further testing. Do you suppose the hoof beats were really from horses, not zebras? The story goes on… TO BE CONTINUED.

 

FacebookGoogle +TwitterLinkedInPinterestInstagramYouTubeBloggerFeedsPHAware Download our App

The information provided on the PHA website is provided for general information only. It is not intended as legal, medical or other professional advice, and should not be relied upon as a substitute for consultations with qualified professionals who are familiar with your individual needs.

801 Roeder Road, Ste. 1000, Silver Spring, MD 20910   Patient-to-Patient Support Line: 1-800-748-7274
Webmaster@PHAssociation.org
    Privacy Policy   Virtual Tour of Website    Provide Feedback & Report Bugs

Designed by Matrix Group International, Inc.® | © 2014 Pulmonary Hypertension Association. All Rights Reserved.

NORD

The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.