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The first time PH came up in my medical history
I’m reading through old journal entries to try to figure out some things that happened six years ago or so. Quite by chance, I just read about the first time anyone mentioned pulmonary hypertension as a possible cause of my symptoms. March 2, 2016.
I had gone to the ER with “the symptoms,” wanting to be sure it wasn’t a heart attack. It wasn’t. But they found a “mass” on my liver, which they later decided was nothing. (It’s amazing how often that happens in my health care!)
I wanted the pulmonologist I’d consulted with after my cancer treatments ended to double-check the ER doctors’ opinions, so I went to see her. It was a complicated and not overly satisfying visit with her. But she suggested my symptoms might be PH. She threw the idea out as if it was a fishing expedition, so I chose not to do the right-heart catheterization she had offered.
That probably wasn’t my best decision, but it’s also quite possible that I would have gotten one of those “only slightly elevated, so it’s nothing” results. And the last thing I needed was MORE of those in my medical record!
A few years later, an echocardiogram found slightly elevated arterial pressure (I think it was), but the cardiologist judged it to be “nothing”. So it was ignored.
Early this year (2022), I had a right heart cath at my local hospital and was told it was fine. No PH.
A couple of months later I had a right heart cath at Newton Wellesley/Brigham & Women’s Hospital in Boston, and they found mild PH. (And impaired systemic O2 extraction.)
It’s just a really uncomfortable feeling to see that medical jerking around. What I’ve related here is only a slice of a larger, longer picture. <<big sigh>>
Brenda D.
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8 Replies
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I’ve heard a lot of PH patients with similar tales. I don’t remember the average time from start of symptoms to PH diagnosis, but it’s measures in terms of years, not months.
As for whether it was a good or bad decision to not have that RH cath the doctor recommended in 2016? I think it matters more what you do now than what you did/didn’t do 6 years ago. I’ve always believed it’s better to look forward than backward (except as looking for lessons learned that can be applied to future decisions). Just my .02.
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Hi @brendad53, as Mamabear says, many PH patients have experienced the same scenarios as you. Often, PH is so mild it doesn’t concern many doctors; those people notice more symptoms as things progress.
In reality, we always suggest seeing a true PH specialist early on because they usually pick up on symptoms and take mild PH more seriously.
I’m sorry that you are struggling with decisions from years ago. Again, I agree with @mamabear007 here and say it’s more important what you do today and in the future. We can’t go back, but we can look ahead and focus on what is in front of us now.
I recall one Echo I had done a few years before my diagnosis that showed elevated pressures. I never knew that until I requested my records from a hospital visit for hernia surgery. Please don’t ask me why they did an echo; I found nothing to explain that. Inquiring minds, yep, I know.
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@jenc, patients will often have an echo or EKG before surgery. When I had spinal surgery, they did an EKG. I’m not sure what would cause a doctor to choose one over the other. With all the other surgeries I’ve had (c-sections, tonsillectomy at age 31, hysterectomy at age 32), The doctors never ran any type of heart tests until I was in my 40s, so I’m guessing it had something to do with my age.
¯\_(ツ)_/¯
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Hi @mamabear007, thanks for that reminder. Yes, you’re correct; doctors often order tests such as an EKG and/or Echo before a procedure.
I was not yet 30, but maybe that was the cut-off for that provider, LOL. The 40s are not old, my friend. Isn’t 60 the new 30?
Take care, and enjoy your Christmas holiday season.
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@jenc, now that I’m in my 60s, I consider myself old. Back when I had that EKG, I was but a babe. ????
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Most definitely, you were just a babe, @mamabear007. Hehe.
I am wishing you and yours a Merry Christmas season. Stay warm and safe.
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Thank you, @jenc. I’m wishing you and all the members of this wonderful forum a Merry Christmas (or whatever holiday is celebrated). To quote one of my favorite Jerry Seinfeld episodes, “Festivus for the rest of us.”
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Interesting. I’ve had multiple tests of my heart and lungs since my cancer diagnosis in 2009. On many occasions they come up with “something” and then decide it’s really “nothing.” At least three times, the initial reading of an EKG has suggested that I’ve had a very mild heart attack, then doctors decide that isn’t so. I’ve have 3-4 or so mentions of some kind of “anomaly” in my lower right lung lobe, but then everyone decides it’s really nothing and they ignore it. I’ve had multiple pulmonary nodules since my cancer diagnosis, and they have been slowly increasing in number and size…but everyone says it’s nothing.
When I got cancer, I absorbed the mantra that “early diagnosis saves lives.” Early diagnosis helps you get to the disease more quickly, address it more quickly, hopefully prevent further progression or at least slow it, and hopefully save a life. That lesson from the world of cancer has carried over for me into ALL health care issues. So all of these “there’s an anomaly” followed by “nah, it’s nothing” over and over and over again does make me wonder what “they” are one day going to find and say, “If we’d only known earlier, we could have done something. But now, there’s not much we can do for you!”
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