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Definitely no CTEPH
I had a VQ scan on the 20th (Friday) and it was clear. Apparently not even a trace of the confirmed PE from November 2019.
My heme ollie (ollie docs, you know? onc-ology; hemat-ology; pulmon-ology) told me that my d-dimer is running above and below the 500 mark (cut-off for “too high”) because I’m getting older, and d-dimers for old folks tend to run higher. He is totally unconcerned.
I self-referred to the CTEPH program at UCSD, asking for Dr. Kim to read my info. He has indicated that while he will offer me an opportunity for an evaluation out there, he wants to tell me that might reach the same conclusion as my local lung ollie…who, BTW, is James Ford. He’s one of the guys the PHA has featured in one of its webinars, so he is certainly very knowledgeable about PH.
I was diagnosed with mild PH when I had testing done in Boston a year ago. Whenever testing is done at my local hospital, the analysis from the radiologist always says no PH. So who the heck knows!?!
I ran across the results from my R/L heart cath last spring, and the numbers there (most of the numbers) are a bit over the “high” cut-off. But no one has spoken to me about them in such a way as to give me a name for what that indicates. So who the heck knows!?!
Bottom line is that I don’t qualify for the CTEPH support group events, but would like to thank everyone there for being so welcoming and understanding. As for the “regular” PH folks, I’ll continue to hang around for a while in your company, if that’s alright, because you all know stuff about breathing that is better than what they teach in textbooks!
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13 Replies
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@brenda-denzler ruling things out is an answer (of sorts), but I hope a correct diagnosis is in your future. In the meantime, I hope the doctors will be able to treat symptoms as well as they can.
Don’t you go anywhere! We know you are struggling with symptoms similar to PH and we will continue to support you through your medical struggles.
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Thanks. I have learned a lot from being in this forum, though I must confess that there is SOOOO much for me to learn. I learned a lot about cancer, when I was diagnosed with that. Learning about lung disease is another big learning curve, and I have not been tackling it with the gusto that I used to learn about cancer. I think I’m just tired. Existentially exhausted. Like the t-shirt says, I don’t want any more experiences in life that don’t kill me but make me stronger. If I want to be stronger, I’ll quit showering!
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@brenda-denzler I would 100% wear a shirt that reads, “I don’t want any more experiences in life that don’t kill me but make me stronger”!
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Hi @brenda-denzler, I feel your pain, sweet friend. You are awaiting some diagnosis and receiving such confusing results. Your symptoms are there, and there is an explanation of those symptoms. But you are always welcome here, whether PH or something else.
We also want to support you as you continue your journey and are here to hold your hand as long as needed.
Extra big hugs and lots of swearing words are my thoughts; I’m sure you have, too. 🤗
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Jen, I get catalogs. They have t-shirts in them. I get ideas from the t-shirts that are not proper.
For instance, I bought the t-shirt that says: “My bucket list: (1) Keep breathing.” I thought that was hilarious for someone like me!
There’s another t-shirt I want to get, speaking of swear words. It says, “I don’t really have a bucket list, but my f*** it list is about a mile long!”
I will have to admit that there may be one or two doctors’ names on that last list!
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Brenda, I’m glad you’re staying. Are you still going to do a phone or video visit with Dr. Kim? Even though CTEPH has been ruled out, he may have an idea or two about what can be done to help with your SOB and other symptoms that PH is causing.
Frankly, even though they say your PH is mild, your numbers are higher than my son’s was (and still is) after his PTE surgery, and they’re treating him with medication for that. I pray you get the answers and relief you need and deserve.
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I’m thinking I probably won’t do the phone interview with Dr. Kim at UCSD. I think I might put further contact with them “in the bank” against future need. Maybe by NOT following through with contact, under these circumstances, I will appear “reasonable” to my local pulmonologist and the UCSD folks. Against some future date when UCSD’s input could be even more important than testing right now would indicate that it is. Maybe?
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I think Dr. Kim does “plain” PH, as well. I think if he were going to blow you off, he would’ve done it already instead of offering to do a phone visit. Or rather the gal telling you he’d do a phone visit.
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Brenda, I, for one, will be happy to see you within the CTEPH ranks, so don’t bail on us. We’re only here to support you, no matter what the diagnosis. And a lot of what we go through with PAH/CTEPH is the same stuff ‘regular’ PAH folks go through. Hang in there.
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Thanks. I would miss you ladies. You’ve all become part of my “mental village.” (Don’t know whether that pleases you or alarms you! LOL!)
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That definitely pleases this lady! 💜
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Stick with it. You know something’s not right. Your doc hasn’t been living in your skin, you have. Talk to Dr Kim. If there’s one thing he ought to know about first hand and could give you feedback on, it’s diagnoses that patients go years without getting.
Some great t-shirts in this thread.
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It’s good to know you don’t have PH. Your medical journey had to be a real roller coaster ride for you. I hope you still hang out here.
I have had an on and off again diagnosis with PH too. I understand what you are going through. Right now I am on again. We’ll see what happens when I see the PH Doc at UCSD this winter.
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