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What are your thoughts about this?
Folks,
I’ve taken this to Mama Bear. I thought maybe I’d extend my outreach, now.
I have a history of 3 DVTs and 1 PE. Last occasion: November 2019. On 5mg Eliquis twice a day ever since then, and I take it religiously.
In April or May 2023, I had a somewhat elevated prothrombin time. No one takes note, except me.
In mid-June I travel by air to KS. I experience pain in my calf, a pain in a new place in my chest that is far less severe than, but reminds me of, the PE I had. I am SOB and have some trouble saying a complete sentence without stopping to take a breath.
I do not get it checked out. I’m taking care of my dad, and the symptoms gradually subside, so I let it go. (Mama Bear wanted me to get it checked out then. I didn’t follow her advice, but wonder if I should have.)
I had bloodwork yesterday and got a d-dimer included in it. It’s within normal range, but barely. Very close to the top end of “normal.”
Previous d-dimer values have been nowhere close to the top of whatever their “normal” range was.
I have shared the above with my hematologist (and Mama Bear). He says a normal d-dimer is a normal d-dimer, and it’s a mistake to compare earlier and later measures because they have different reference ranges.
I maintain that I’m only looking at them all within the context of each one’s reference range.
And I maintain that when you consider the prothrombin, the leg and chest pain, the SOB, and the d-dimer, there seems to be a trend. Something is afoot that would be better caught sooner than later.
Your thoughts about these events?
Am considering a second opinion from a doc in a different health system. BUT…what would a logical next step be, in terms of diagnosis or treatment, from this other doc? Any suggestions?
Brenda
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30 Replies
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Oh, and BTW…just got results back from a cardiac MRI. My heart is wonderfully healthy.
Put that together with “my lungs are healthy” and “your blood is healthy.”
I’m so darned healthy on paper, I should be a character in a novel instead of a 3-dimensional, living, breathing (so far) human being.
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Hi @brendad53, like @mamabear007, I am concerned and would have told you to get checked out then. Also, if you present to the ER with your increased symptoms and explanation above, they would think of PE immediately. It sounds like you need a VQ scan and certainly another opinion.
Do you live near Duke,UNC or somewhere else?
You cracked me up with your, being a character in a novel” comment.
I’m sorry you are not getting better answers as to why these symptoms and your slightly elevated D dimer, especially when compassion to others in the past. This is so dang frustrating!
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Mama Bear was probably right. I probably should have listened to her. But I didn’t, because my first (and only, to date) PE didn’t show up right away on CT, back in 2019. And it was a biggie! Pain at 10 out of 10, when it happened. Because it didn’t show up on a CT scan, I was told the pain was 24-hour delayed reflux due to eating too many mints the day before! Thus, I wasn’t sure anything would show up on any scans they might do.
Second, I was in KS to take care of my dad so that my brother, who usually shoulders that responsibility, could take his yearly family vacation with his family. If by some weird chance a scan HAD shown a PE, what would they have wanted to do? I’m already on 5mg of Eliquis 2x a day. They might have wanted to put me in the hospital to anti-coagulate me. Well, that would mean I couldn’t take care of Dad, and that would have scuttled my brother’s vacation.
So I decided to just wait a bit and see if it got better. And within week, it was much better. Symptom-wise, that is.
It was only as an afterthought that I asked for the d-dimer test on Thursday. Just to double-check my “OK, all was fine” decision.
Thank all of you for listening to me and validating that I’m not just being neurotic. Or if I am, I’m neurotic for cause, not without cause! 🙂
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Hi @brendad53, I am posting this because @mamabear007 had trouble posting. She says, “@brendad53, you’re not being neurotic! I think you should definitely get a second opinion. Has your PH specialist said anything about the D-dimer? @jenc is right; you likely need a VQ scan and a second (or even third) opinion. They need to consider your recent symptoms when deciding what tests should be done.”
I echo her thoughts, and now that you’re home, maybe you can reach out and schedule a consult with that other specialist in another hospital system. Usually, places like Duke, etc., have waited, so best to get that in process. Maybe if you have any issues, you can use that hospital system.
Now, let’s take care of you!
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Hey, Mama Bear and Jen…. You know what? I’m afraid. I’m not afraid that they WILL find something. I’m afraid that they won’t, and once again I’ll be told that it’s all in my head, my poor mental health, because I”m overweight, and/or because I am deconditioned and not exercising. If a person could get an “all clear” test result without incurring those other “answers” for their symptoms, it would help.
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I understand the fear, @brendad53. I watched my son deal with it for more years than I care to think. Until the day he found the doctor that wasn’t willing to give up on him. I pray you find a doctor like that. You deserve it.
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Hi @brendad53, I get it! I was scared like you after being told it was in my head and all sorts of things until I finally saw a cardio who listened and knew I had a problem. He diagnosed me with PH and fought my insurance company to keep me in the hospital until his testing was done.
Like @mamabear007, I think and pray you’ll find that doctor soon. It becomes too overwhelming. Lots of positive thoughts, prayers, and light are coming your way, my dear PHriend. <3
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My hematologist says that no matter how high or how low my d-dimer is, as long as it’s within the “normal” range it’s fine. No worries.
As for the symptoms, I had, he wants me to come in and talk about them.
I asked for routine d-dimer tests once a month when I have my port flushed (so no extra needle stick involved), and he refuses to allow one.
I’m feeling anxious.
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Hey @brendad53, is this your long-time hematologist? Why won’t he agree to anything you suggest? It’s understandable if you’re feeling anxious and frustrated with him.
He actually wants you to come in and discuss the symptoms you’ve been experiencing. Are you anxious that he might share more information, or worried once again that everything will just be “fine”?
Big hugs, and try the five-finger breathing. <3
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I’m afraid that I’m going to be taken to the woodshed for challenging him and insisting on how I see the value of the various d-dimer tests, which is at variance with how his training and experience have made him see them.
I’m afraid that, in the end, he’s going to tell me everything is “just fine” and he will continue to refuse to let me do a monthly d-dimer for 6 months, to reassure myself that all is truly well and not heading out of control.
I’m afraid that we are repeating the error of relying over-much on the lab test and ignoring supporting info that might suggest something is afoot. And he does not see that old situation in the same way I do. He says we used the best info we had all along, back then. I say no, we didn’t. We ignored some pieces of information because they didn’t fit in with the lab values, which we privileged. He disagrees. So of course he is not, now, going to see the current situation as a kind of re-play of the past. Because he sees no problem with the past and how we handled things then.
I’m afraid that this doctor who has liked me and been very collaborative with me, is going to change his mind and NOT like me and refuse to be so collaborative going forward.
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@brandad53, if the worst happens and this doctor decides he no longer likes you, then you know he’s not the right doctor for you. Then you get the empowered feeling that will come from being the one to fire *him*.
If the best happens, he’ll have thoughts on what could be causing your symptoms. I think if that where all there was to it, he’d just tell you over the phone. Could it be an indication that he has in mind tests that should be run to get to the bottom of your new symptoms? I don’t know the answer to that question. I do know the only way to find out is to go see him.
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🙂 Yes, Mama Bear. I will. On Tuesday next week. <<shudder>>
It would be better if you went with me. Ah, to dream!
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Brenda, I’ll do the next best thing. I’ll keep you in my thoughts and prayers. I know it’s not the same thing. Don’t stop dreaming. 💜
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Hey @brendad53, I’m sorry, but I think he would not tell you to come in to say, “all is fine.” But you know him better.
But again, I am on board with @mamabear007. This lady has the right frame of mind. If he doesn’t like you or says no, it is time to find a new doctor, and don’t stop until you get one who WILL listen and take what you say into the picture.
We all know, unfortunately, it has to be a great doctor who says, you are right; maybe we did muss something back then”. Is he that doc? IDK.
We all will know more on Tuesday. Until then, try not to work yourself into anxiety attacks. I know, easier said than done.
I’m keeping you in my thoughts and prayers. We all will be there holding your hand, Brenda-hugs.
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He wants to tell me — again — that the d-dimer test is fine. That I am comparing two kinds of d-dimer tests with two different reference ranges, and this cannot be done (I’m not doing that), and that given that my symptoms resolved, everything is no doubt just fine. Because of that, there is no justification for allowing me to have a d-dimer test done on a monthly basis for a few months.
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@brendad53, if he does that, I’ll be sorely tempted to hop on a plane, drive down to his office, stand on one of his chairs, and kick him in his shins or knees.
Yes, I’m really that short.
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LOL! I’ll look forward to meeting you in a week or two, then. He’s already said this in writing once. Now he’ll reinforce what he’s saying, and do so in person.
So looking forward to meeting you, Mama Bear! 🙂
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@brendad, I look forward to your update.
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@brendad53 – I just read all the posts. Today is Tuesday so this must be your doctor appointment. I want you to know that I prayed for your calm and peace and that God would give your doctor wisdom and discernment as well as the same for you. No matter what is said that something positive come out of this meeting. I know how frustrating and scary appointments can be when you know something is wrong and test results and doctors don’t agree. I just want you to know that I’m thinking about you.
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Debbie, Mama Bear, Jen, and all who were holding good thoughts and praying for me. It worked.
I have always liked this doctor, and I found his attitude toward me in our EPIC exchange rather distressing and dismissive. So I was not looking forward to seeing him to “discuss my symptoms.”
However, because that’s how he phrased his request to see me, I wrote up a short chronological table of the symptoms in question and when they’d appeared, as well as where that d-dimer test fell in the timeline. I printed that out and had it lying on his exam room tabletop when he walked in.
He asked what I wanted to do have happen by the time the appointment ended. I thought for a second, and went for the whole hog. I said I wanted him to authorize 6 months’ worth of d-dimer tests using the FEU calibration system, if for no reason other than my peace of mind given what was outlined on the paper he had in front of him. He said, “I have no problem with doing those tests. But I think we need to establish to what end we are doing them. What question do we hope they will settle?”
So we went over the symptom chronology I had prepared for him, and I said that if the d-dimer tests held steady over 3-4 months, or went down for 2 consecutive months, we could stop them early. I would be reassured. Otherwise something appears to be up.
He asked what I thought we should do if something appeared to be up, given that d-dimer
can be elevated for several different things and not just because of clots. I said right.(1) At the very least, in the absence of symptoms, we will know that something is afoot and can maintain a watchfulness. I said that I learned the mantra “early detection saves lives” as a cancer patient, although I know that is not necessarily true…even in cancer. But, I said, it’s still my prejudice when it comes to diagnosing. He accepted that.
(2) If the d-dimer tests continued to climb and there were symptoms, we would let the symptoms be our guide in figuring out possible next steps.
It was all very pleasant, very to-the-point, and I found myself loving this doctor all over again.
I want to thank all of you for listening to me be worried, angry, and anxious about all of this. It sure does help to have a group of people at your back who believe in and support you, even if you may be a little “out there” at any given moment.
Hugs to all,
Brenda
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Woohoo, @brendad53! I am doing a happy chair dance after reading that update!
This makes me feel so much better that he listened to your concerns and….agreed! From what you share, he sounds like an HCP that we, too, love for taking care of you and listening!
Mostly, I am impressed by his questions, and of course, you came prepared! Kudos to you for not stopping to self-advocate despite your history with the medical field!
Hopefully, after your appointment, you will stop by to grab a gallon of your favorite ice cream. I may need a nice adult beverage this evening for this celebration. Well done, my PHriend!!<3
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Key lime pie! 🙂
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OMG, I LOVE key lime pie. That sounds yummy! Maybe I need a piece of that today with my banana bread to increase my potassium. I read it has enough to help, hehe.
Labs in the AM, and we need them to be improved.
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@brendad53, I’m so happy he listened to your concerns. I’m continuing to pray that you receive an answer that leads to a treatment plan that will improve your symptoms.
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I am sorry you are having a hard time. “Mama Bear” was right to asked you to get it checked out. That said now it is good to be your own advocate. Who is your primary doctor? I would make an appointment and share your concerns. If you feel he is not listening tell him so. If you don’t have a primary doc get one. I would look for a primary care physician to can trust and accept what they tell you.
I wish you the best
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Gayle, my primary doc is the one who ordered the d-dimer test that became the bone of contention between the hematologist and me. 🙂 He, too, is a keeper.
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Good afternoon,
Just saw this thread and all the replies . I agree with the comments and your rationale in going forward . I must say I learned something very valuable today in a Zoom meeting: we must show people how to treat us . We must value ourselves above all and know that what others think about us is none of our business. Bottom line : keep trusting your gut and prioritize your needs above what someone even a MD thinks . If there’s no meeting of the minds , move on . Peace and blessings for all to have good and greater health 💕💕
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Hillary, I think that’s two things: (1) Show people how to treat us, and (2) it’s none of your business what other people think of you.
I especially need to work on #2. For a few years I got tired of being so self-conscious and just gave it all up. Didn’t care a flying fig what others thought. I’d try to be nice, and fair, and trustworthy. I’d try to grow as a person, over time. But in the end, if people couldn’t accept me as I was, too bad. I am the way I am.
Then cancer hit in 2009 and medical PTSD, and my self-esteem took a nosedive back to too close to its original resting point. So I’m back to reminding myself, when possible, to work on #2 again. Thanks for the reminder!!
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@brendad53, we’ll all be here to remind you about #2. As long as you have good information — and with a group like this, how can you help but have good information — it’s okay to push back when any doctor doesn’t seem overly concerned about what’s going on with your health. It’s something almost every PH patient has had to learn and relearn multiple times.
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Hey @brendad53, I’m so thrilled you have—a few “keepers” now in your corner. We will be here to help remind you to continue to work on #2. But also, if you disagree with a doctor, it’s your body, and you are doing the right thing to be your best advocate. We got you, girl.
I’m also grateful you have @mamabear007, who brought you to the forums. Big hugs, and have another slice of key lime pie. <3
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