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New Member Shares Her Journey
New forum members, @anneleo, shares her journey thus far and is looking for answers. I am sharing her message below. Let’s welcome her and help her by sharing our experiences.
Hello everyone, I’m new here, glad to find such a supportive network! I’m looking forward to also being a support for others here. My “PH journey” is maddingly confusing and has been a long road. I’d like to know if anyone else can relate? I’ll start by saying my pulmonologist has referred me to a PH specialist center so hopefully I can get answers and relief. About 10 years ago I became acutely ill, hospitalized with right heart failure and pulmonary hypertension, diagnosed by right heart cath – mPAP 45. At this time I also got a dx of Mixed Connective Tissue Disease. I was sent to a PH specialist, who did another RHC, this time my mPAP was 26 and she said it wasn’t “high enough” to be considered ”real” PH. So she turfed me back to my original pulmonologist and that was my last testing for PH until now, 10 years later…. I have since read that a pressure of 26 could indeed be considered PH, so…that does weigh on my mind. (Very mild/low, yes, but still, I do feel like maybe she shouldn’t have dismissed me.) In the interim, over the years I have been treated with DMARDs and occasional Prednisone for my MCTD and seen annually by my pulmonologist for a 6MWT and PFT. Quite abruptly, over the past month I developed significant afternoon fatigue, headaches, shortness of breath, feeling very rundown, and I’ve lost 10 pounds without trying. Oxygen desaturations confirmed at 6MWT; at home I track it and it gets as low as 83% sometimes at rest, always when walking. (I have 2 pulse oximeters I use to verify accuracy of readings). Also, daily I have these incidents of hot facial flushing where my face gets hot and “tomato red” (according to family) and on the inside I feel like all my blood has run cold and I feel nauseous. These episodes last from several minutes up to a whole hour. No idea how or if that would relate to PH but thought I’d mention it – I wonder if anyone else here has had this problem? Pulmonologist ordered me an echo, CTPA (ct with pe protocol) and PFT. CTA: Normal
PFT: Normal
Echo: Demonstrated high pressure (I didn’t get an exact number – this is just what he told me); valve problems (I don’t know what he meant, I don’t have the report) When he called me with the update, he said he had already sent a referral for me to go to a PH specialist (not the one from years ago, thankfully). I’m aware that echo estimates can be wildly off, but I’m hoping I’ll get another RHC sooner than later – I need answers since I honestly have no idea what’s happening to me. I’m scared, I need relief and a plan going forward. I’m wondering if anyone else here has had this kind of long, confusing and drawn out “journey” (can’t think of the right word) with PH? I feel really demoralized right now and being in limbo waiting for answers is tough (though of course I’m grateful my pulmonologist has acted quickly on my recent issues). In any case, it’s great to find a support network like this, I’m glad to be here and hope to get to know some of you. ????
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