January 24, 2021 at 10:05 am #28810
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
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. 🙂
January 25, 2021 at 2:30 pm #28818
Hi @anneleo, I do see where you would be scared and frustrated. You have been through the wringer, as they say. I am so sorry that you are having such a difficult time. I must say, many PH patients go undiagnosed for years because of doctors that say, as you mention, “not high enough.” It sounds like you needed that PH appointment yesterday. When is that scheduled for?
It also is not uncommon for PH patients to have normal PFTs.
We are here to support you along the way. It is no fun searching for answers and getting misleading information. Your symptoms are not made up; I think your new PH doctor will be the best solution, and as you mention, an RHC. It sounds like you have a lot going on that hopefully, that can resolve for you somewhat. You are not alone.
January 25, 2021 at 7:41 pm #28820Colleen SteeleKeymaster
@anneleo in my humble opinion anytime there is a concern about PH, no matter how minor, it should be addressed. The sooner a patient can start treatment or at least have the PH followed on a regular basis, the better and longer quality of life can be achieved. It sounds like you are finally in good hands and I am happy to hear that you will be seeing a new specialist.
As Jen mentioned, PH patients can have normal PFT’s and not need supplemental oxygen right away. A lack of symptoms shouldn’t mean that your PH can be ignored. Continue advocating for yourself the way you are. If you leave an appointment confused or think of more questions when you get home, try your PH specialist’s nurses line. They hopefully will be able to explain further.
Also, keep a journal where you take notes during appointments and record symptoms throughout the day. Write down questions when you think of them so you remember to ask during appointments…or here on the forums.
We are here for you and understand what you are going through.
January 26, 2021 at 8:29 am #28827
Thanks, @colleensteele, you offer some helpful tips. I did use a journal but always forget to share that. Advocating for yourself, @anneleo, is much needed in the PH community. I am so happy that you have a PH Specialist back on board. Like Colleen says, the earlier, the better.
We will be here with you to ask questions. I was going to say write them down before your appt. Colleen covered that, too well. Let us know how we can best prepare you for your appointment.
January 27, 2021 at 4:52 pm #28874
Mama bear says, “ @anneleo, a few years ago they changed the numbers to be considered PH. It’s now anything above 20, though some doctors don’t acknowledge the new recommendations. Given that your O2 sats drop during the 6MWT, you may want to ask your PH specialist if a RH cath during exercise is warranted. This would check for exercise-induced PH. If you’re in such shape that exercise isn’t safe for you, they can simulate exercise with medication, so it will feel similar to a normal RH cath.”
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