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5-year anniversary today!
Well, it’s March 13th. My oldest grandson’s birthday (turning 13) AND the five-year anniversary of having my pulmonary embolism.
I was sitting at my computer, minding my own business, when all of a sudden it felt like someone had walked into the room and hit me HARDHARDHARD on the outer side of my right chest area with a heavy hammer. Construction-grade hammer…not one of those wimpy little “lite home use” things! The pain was excruciating. I slid out of my chair and onto the floor, clutching my chest and gasping for breath. When I was finally able to catch it, I staggered to the living room and sat down in my rocker, still reeling from the pain, which had only diminished slightly.
I sat like that for maybe half an hour, debating whether I should go to the ER. I knew it wasn’t a heart attack. The pain was in the wrong place for that. But I had no idea what it might be. As I sat there, the pain slowly decreased to the point that I felt like I could walk upright and look fairly normal. But it never went away. I was supposed to work for a couple of hours as a volunteer in the hospice office, so I decided to go. I figured if it got better, it wouldn’t matter if I did my volunteer work. And if I got worse, there were nurses there in the office. And if it got REALLY bad again, I’d be at hospice—the right place to be for pain like that! (Dark humor, here.)
By evening the pain hadn’t gone away, so I went to the ER. They did a CT scan (I think they used contrast?) and found NOTHING. Told me it was reflux. Perhaps due to having eaten a LOT of York peppermint patties 24 hours before the symptoms hit. And besides, I was on Eliquis at the time, so they didn’t think it was possible for me to have had something like a PE.
I went off Eliquis at the end of May that year, but got my hematologist to agree that I could take a d-dimer test monthly for the next several months just to reassure myself that I wasn’t clotting up again. The hematologist told me that my chances of getting a PE were exceedingly small, so he wasn’t worried at taking me off Eliquis, but allowed for my worry by letting me get the d-dimer tests.
The pain never entirely left, but it got a lot better. My breathing, however, did not. I went in search of a medical answer and found none. I joined a cancer survivors’ exercise class at the Y, thinking that perhaps I needed to exercise and improve my physical condition. But while others in the class got better and better as the weeks rolled by, I got worse and worse. I couldn’t keep up. I got out of breath very fast. It worried the instructors.
I went to my PCP at this point and complained that everyone else in my exercise class was getting better while I was getting worse. I said I was having trouble with getting SOB upon the *least* exertion. He said he had no idea why.
I was going to fly to Amsterdam in a couple of days. Free trip! (Long story.) So I got another d-dimer test done. And I noted that I was having pain in my right calf that felt like DVT pain. I’d had 2 DVTs there before, so I knew what that felt like. Four days before I was due to fly out, I called my PCP to ask him if it was safe for me to fly, because of the pain in my leg and my trouble breathing. I asked him to check my latest d-dimer test results.
Voila! In a heartbeat my trip to Amsterdam was canceled. My d-dimer was over 800. My PCP sent me for a CT scan with contrast, and there was the PE. Right in the area of my chest where I had felt the “hammer blow” 7 months earlier (by now). And a Doppler showed a third DVT in my calf.
The medical professionals insist that they missed nothing when I had the chest pain on March 13th. That there was no PE then, but there was 7 months later. I think they’re full of horse hockey.
I’m on Eliquis for life, now. VQ scans (two of them) in subsequent years have shown no impairment in my lung function, so I am reassured time and again that there is no evidence that I have CTEPH. I self-referred to San Diego last year and, after looking at my scans and medical records, San Diego agreed that it seemed unlikely. So…..
Happy 5th anniversary of my PE!
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17 Replies
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Wow, what a wild ride it’s been for you, @brenda-denzler! And this is only the last five years! I am with you; I think they missed it and, of course, aren’t going to admit that. But you know your body well enough.
Wow, Amsterdam, huh? It was an insane experience, and I know this is not even a tiny bite of your medical history. Your book is still on my reading list on Amazon, by the way.
Thanks for the incredible description of what you experienced and how it felt. This may save someone’s life one day, Brenda. Happy 5th PE Anniversary! I guess it isn’t easy to forget since it’s your oldest grandson’s birthday! Happy 13th birthday on the 13th to him!
Thanks again, Brenda, for sharing. This is something many can learn from. Take care and take it easy this week, my PHriend. Cheers, and many more -years, that is, not medical diagnoses.
🤗🙌
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😜 I agree. Years, not diagnoses! LOL!
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Hehe, yes, that would be wonderful, right, @brenda-denzler? I know I hate that so many doctors dismissed your concerns. I often think of the old book The Scarlet Letter. I had a popular, supposedly PH-knowledgeable doctor who, for some reason, didn’t care for me and pretty much dismissed my early symptoms. Later, when I was finally diagnosed, her entire clinic wouldn’t touch me. She had “marked” me.
However, fortunately, in my case, another PH doctor kept me inpatient after I passed out long enough to figure out the issue, and it turned out it WAS PH. The previous doctor discharged me from the ER and noted when I fell into a wall during a six-minute walk test that it was “inconclusive” because I couldn’t complete it.
You inspire me, my PHriend!
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You know, Jen, stories like you and I have told — and others here and EVERYWHERE — about how they were misdiagnosed, overlooked, and frankly mistreated by the medical profession…. Those kinds of stories are not hard to find. They are not rare.
I keep trying to figure out why this is.
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Unfortunately, you are correct, @brenda-denzler. It’s frustrating and sad that this occurs much more often than we like to think.
Glad ya saw your PCP and have some steroids to try and kick this mess out of your lungs! Yay, for your PCP, for not dismissing this!🤗 Hoping that prednisone helps you feel much better soon!
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You have been on quite a ride……eh? Glad you got things figured out…..well mostly. I had a bad CT scan result with my cancer in Alaska. The Sure enough, the radiologist in AK read it wrong. In AK medicine can be on “the third world country” side of the spectrum. For me the doctors in UCSD call the shots and work with my doctors in AK.
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Yikes! That’s what scared me so much during cancer treatment. What if the doctor read something wrong and gave me bad advice? Advice that would end up hurting me or even killing me?
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That’s why you need to get a second or third opinion. A friend of mine in Alaska got diagnosed with prostrate cancer. 3 different oncologists in Alaska told him he could let it go for a while. Luckily he decided to go to a cancer hospital in Phoenix. They told him something wasn’t right. They removed a tumor from his prostrate that if let go much longer it would have killed him.
I don’t know how doctors are in your area, but if you feel something is wrong, go to one of the well known hospitals. That’s why I come down from Alaska and go to UCSD.
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Yes, so true, @Roger Bliss! Unfortunately, a second and more opinion is often needed. I always say, “its your body, go with your gut”. We are our body experts and can work with a knowledgeable healthcare provider to do what’s best for us. Thankfully, your friend went to Phoenix and had the tumor removed.
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I’ve got a whole lotta problems with a whole lotta doctors that ‘cared’ for you, including UCSD. It broke my heart when they decided you should stick with what your NC doctor said. I really do hope somebody will pay attention soon. Wishing you better health and higher O2 ASAP.
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V.R., yes. Went to PCP this morning (who is talking backstage with pulmonologist) and he said my lungs are clearly not working well right now. He gave me 5 days of prednisone, to see if that will help me lick this viral infection that I’ve been battling (with very slow success) for about 10-12 days now. My resting O2 is right around 90-91%, and it dips into the upper 80s from time to time. Three weeks ago my resting O2 was 92-94%. So we are working on getting me back to my old “normal,” sorry as it was. It was still better than all this!
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How are you feeling this week, @brenda-denzler? Did the steroids help to offer you some relief?
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Steroids seemed to help, but it’s still been two steps forward and then 1 or 1.5 steps back. Yesterday doc gave me antibiotic to take, too. Today is last day taking steroid. I think I’m slowly getting better, but very slowly. It’s never been like this before, and it has really gotten my attention…..
Hope you and all of yours are doing well?
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Oh, @brenda-denzler, it sounds like this mess is taking a toll on you. It’s no surprise this has caught your attention. It scares the heck out of me enough to help me when I struggle with times like you are experiencing now.
Hopefully, the antibiotics after the steroids will be what you need to see more improvements, my PHriend. I’m also grateful that you and your doctor stay on top of this. Take care and remember each tiny step forward is progress.
Love and hugs coming your way- 🤗
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Antibiotics did the trick. My GOODNESS that was miserable!!! Not only the pain and difficulty of coughing constantly, but also the need to do so much laundry…if you catch my drift! 😉
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So glad the antibiotics did the trick! 💜
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Woo-hoo, another win for the week or month, @brenda-denzler !~ I am so grateful you feel much better. Yay for those antibiotics! But now, if you’re like me, you are playing catch up. 😉
Thanks for updating us and keep us posted on how you are managing!
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