CTEPH, PH, Whatever–Does this change everything?


So the last doctor’s appointment with the pulmonologist was an interesting one. He took plenty of time to answer several of my questions. I asked about the last V/Q scan, and I’m due for another in February–this is the gamma radiation scan that makes me radioactive for up to three days. It’s cool–they give me a sticker that says I’m radioactive. One day, I might become she-hulk. I hear she’s a lawyer. I wanted to be one of those at one time, a long time ago, in another lifetime, it seems.

Anyway, I was asking about being put on the new CTEPH medication that was approved back in October of last year. I’ve been told I can’t be put on it until I get a good right-heart catheterization (RHC). As many of you know, after over an hour of trying to find and advance the line on my RHC, we had to stop the procedure, so we never got results. We’re looking into the fact that my right-sided aortic arch (which is apparently extremely rare), is preventing the advancement of the catheter line. We’ll see. There are other ways of doing the RHC though. We’ll worry about that later.

But that’s when the pulmonologist told me that not only do I have CTEPH, but I also have PH, from sleep disordered breathing. He’s been saying it was sleep apnea for a couple of years, but after three sleep studies all saying I don’t have sleep apnea, I don’t think he can continue to call it that any more. I agree I have a sleep disorder–I have insomnia (clinical–not just the stuff folks throw around and say they have insomnia when they can’t sleep one night), and I also have reduced or absent REM sleep. I can sleep four to six hours in a stretch and not show a single REM cycle. I rarely if ever can sleep more than 5-6 hours without waking, usually closer to four.

This IS causing problems with my health, and it does need to be addressed. We’re working on that. Sleeping pills didn’t help, but I did find that the muscle relaxer my primary doc gave me helps me sleep quite well. I think we’re going to work on that, since it helps.

Back to the doctor’s appointment. I asked him why I hadn’t been referred for the PTE surgery, and that’s when he told me, and I’m almost quoting here, “Your breathing problems are a bit more complicated than just CTEPH.”

But the basic gist of it all is that he doesn’t think, and hasn’t thought from the beginning, that I would be eligible for the PTE surgery. But everything I’ve read and everything everyone in the support group is telling me is that EVERYONE who has CTEPH should be evaluated by a trained, qualified, experienced PTE surgical center. It’s been three years now, and no one has even suggested that to me.

That’s why I’m changing doctors.

I’ve requested my medical records. I’ve learned my pulmonologist has a bias against my weight, and that the other doctor who was under him actually was very good about documenting that the majority of the weight I’d gained was fluid retention and that I would lose that when I was properly diuressed. It’s like a comedy almost, reading my medical records. I’ve been telling them for years that my breathing issues and weight gain came on VERY suddenly, and this one doctor just never believed me. He also insisted I had sleep apnea when I did not. He also was the only one out of five doctors who read a radiology report that said I had acute PEs but insisted I did not have them. He also was the the one who kept me on the warfarin blood thinners for two years, even though I was miserable on them, was on such a high dose I was bleeding all the time (from multiple orifices) and was losing my hair from it–my hemoglobin and iron so low I needed a blood transfusion, and yet he still kept me on it. I’m on Lovenox injections now, and I will NEVER go back to warfarin again for all the money in the world!

I could keep going. But the point of all this is that this doctor has done nothing in several years to make me feel better. He’s basically keeping me at status quo, and I’m not happy with where I am. He thinks this is the best it will ever be, and I disagree. I want the cure. I want to be me again, if that’s possible.

And maybe some part of me thinks it’s possible.

And I’m going to keep looking for a doctor who thinks that too, and that’s the one I’ll give my money and time to.

I am so grateful for having found the CTEPH support group when I did, or I don’t know how long I would have continued going on with my life, letting his horrible condition take more and more from me every day.

I’m reclaiming my life.

Love and stuff,




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2 Responses to “CTEPH, PH, Whatever–Does this change everything?”

  1. Buffy says:

    Keep reclaiming your life. Keep seeking to feel better and do more. You’re so worth it. You can do this! (((hugs)))

    • 09/07/2010Lily Marinho recebe Dilma num almoço.05/08/2010Lulla recebe João Roberto Marinho, vice-presidente das Organizações Globo09/09/2010Dilma, um MAR DE TRANQUILIDADE no Jornal Nacional, respostas quase coerentes para uma anta como ela.PRECISA DESENHAR??? Lógico, Dilma teve conhecimento PRÉVIO das perguntas.

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