Posts by Douglas Ramirez3

So, I was sent home for the second time today after getting my dose of Adenpas 1,5 mg bumped up. Honestly, I seem to be handling it pretty well—I actually feel a little bit better than usual, if I’m being honest. They’ve got me scheduled to come back in two weeks to do it all over again. Everything else in my treatment plan is staying exactly the same for now, though I’m still playing the waiting game for some more results regarding my liver enzymes. Oh, and on a side note, the elevator at the Mayo Clinic was out of order two weeks ago, which was just great. But, I guess I can brag a little and say I managed to make it up to the fourth floor all by myself. I had to take a few breaks along the way, obviously, but hey, even small victories count for something, right?👍

So, I got sent home for the second time today after my dose of Adenpas 1,5 mg was bumped up. Honestly, I seem to be handling it pretty well—I might even be feeling a little bit better, if I do say so myself. They’ve got me scheduled for another two weeks of this, and everything else in my treatment plan is staying exactly the same while I wait on some more lab results regarding my liver enzymes. It’s been a bit of a process. I guess I should mention that back at the Mayo Clinic a couple of weeks ago, the elevator decided to quit on me, but I suppose I can take some small victories where I can get them; I actually managed to make it up to the fourth floor all by myself, though I definitely needed a few breaks along the way. Little wins, I guess...

Thomas Jackson9 said:Hey there! To be honest, I'm not familiar with any of the specific medications you mentioned, but pulmonary hypertension can stem from so many different things, and one of the biggest culprits is usually heart disease. I've actually been on Bosentan—which is a specialized drug specifically for PH—for several years now. If you don't mind sharing, could you let us know what kind of therapy the doctors have prescribed and what they told you caused the PH? Since it's such a rare condition, it really is quite the medical journey, just like you were saying.

I haven't actually started any specific therapy for the hypertension yet. While I was over at the Mayo Clinic, they ran a bunch of tests to try and pin down the cause, but they couldn't find anything conclusive, so I guess the root cause is still a mystery for now. My heart has taken some damage, though. They ended up discharging me while they wait for a medical team to meet and decide on the best course of treatment. I'm basically just waiting for them to call me back so I can head back to the hospital to get my prescriptions. For the time being, I'm just taking Edemid for my heart, Diuron, and those Xarelto pills to prevent blood clots.

I mean, I’m leaning towards thinking this isn't actually a side effect, though I suppose I’ll just wait until they finalize my treatment plan—which should hopefully happen sometime this week. Honestly, these symptoms might just be part of the territory given my diagnosis. Who knows? I just got back to California, so maybe the air is just different here. 😉)

Hey everyone, I finally made it back from doing a marathon stretch of follow-up testing at Jordanovac Hospital after what felt like a grueling 17 days. Anyway, now I’m just sitting around waiting for the medical team to finalize my treatment plan. On top of the Edemid and Diuron I was already on, they’ve added Xarelto to the mix to help prevent blood clots. Since these tests started, I’ve had to redo basically everything—CT scans, catheterization, scintigraphy, stress tests, blood work, echocardiograms, and a whole bunch of other stuff too. I guess I've been feeling a little more lethargic since I started taking this Xarelto, so I was wondering if anyone else has dealt with that? When I was actually in the hospital, they were just giving me Heparin via injections instead.
I'm doing alright for the most part, though I have been feeling a bit short of breath over the last few days. It would be great if more people dealing with this same diagnosis could join the conversation here so we can actually swap stories and experiences.

Hey everyone, so after spending two weeks stuck in the cardiology ward at a major hospital in Seattle, I’ve finally been discharged with a diagnosis of pulmonary hypertension. Now, I'm just sitting around waiting for a call to come in for some follow-up testing at Jordanovac Hospital in Washington, D.C. I was hoping maybe someone here who is dealing with the same thing could walk me through it a bit, because honestly, everything I've managed to dig up online hasn't really given me much to go on. From what I can tell, this diagnosis seems incredibly rare here in the States, or maybe it just doesn't get documented much. If anyone has any insight at all, I'd really appreciate the help.