Pulmonary hypertension

Nicole James said:I don't personally think that's a side effect, but you might want to ask your doctor about trying Pradaxa if you feel like this isn't sitting right with you. I've had pretty good experiences with it myself. Definitely have a conversation with your physician, though.

I'm with Nicole James on the medication front. There's Xarelto, Pradaxa, Eliquis... they're all part of that newer generation of drugs.

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. 😉)

Douglas Ramirez3 said: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 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.

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.

Douglas Ramirez3 said: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.

In my case, they did manage to figure out the root cause, which turned out to be an atrial septal defect—basically a congenital heart defect that wasn't caught early enough, which eventually led to pulmonary hypertension. Once you hear back about what they decide for your treatment plan, please do let us know... take care!

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...

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?👍

Is there anyone else on here who might be able to help me out? I’ve got a few questions for anyone willing to weigh in. There’s a fellow member here who’s pretty worried because she suspects a dear friend might be dealing with dg PH.
Thanks

swiftscout2 said:Is there anyone else on here who might be able to help me out? I’ve got a few questions for anyone willing to weigh in. There’s a fellow member here who’s pretty worried because she suspects a dear friend might be dealing with dg PH.
Thanks

Go ahead and ask, I'll certainly try my best to help if I can! 🙂

Thomas Jackson9 said:Go ahead and ask, I'll certainly try my best to help if I can! 🙂

Dear Mirjana, thanks for getting back to me.
Someone very dear to me just had an echocardiogram, and the results showed pulmonary regurgitation, mitral regurgitation, tricuspid regurgitation, and an S3 heart murmur.
I’m wondering if this is typical for pulmonary hypertension—should I be worried? They haven't done an exercise stress test yet, but they did go through with a coronary angiogram (which came back clean, no stenosis found).

Thanks,

swiftscout2 said:Dear Mirjana, thanks for getting back to me.
Someone very dear to me just had an echocardiogram, and the results showed pulmonary regurgitation, mitral regurgitation, tricuspid regurgitation, and an S3 heart murmur.
I’m wondering if this is typical for pulmonary hypertension—should I be worried? They haven't done an exercise stress test yet, but they did go through with a coronary angiogram (which came back clean, no stenosis found).

Thanks,

Hi there! Honestly, if that coronary angiography came back looking normal, then everything should be fine, really. I was wondering, did the echo report mention anything about the pressure levels in the lungs? If it didn't specifically note any elevated pressures, then it’s likely everything is within a normal range. Just remember, regurgitation simply means the valves aren't closing perfectly, which doesn't necessarily point toward pulmonary hypertension.

Thomas Jackson9 said:Hi there! Honestly, if that coronary angiography came back looking normal, then everything should be fine, really. I was wondering, did the echo report mention anything about the pressure levels in the lungs? If it didn't specifically note any elevated pressures, then it’s likely everything is within a normal range. Just remember, regurgitation simply means the valves aren't closing perfectly, which doesn't necessarily point toward pulmonary hypertension.

Dear Mirjana, they listed some numbers, but I have absolutely no clue how to make sense of them. For the tricuspid regurgitation (TR max PG), it shows 29.2 mmHg. I'm lost—what does that actually mean or signify?

swiftscout2 said:Dear Mirjana, they listed some numbers, but I have absolutely no clue how to make sense of them. For the tricuspid regurgitation (TR max PG), it shows 29.2 mmHg. I'm lost—what does that actually mean or signify?

Well, typically, we start looking at pulmonary pressure once those numbers climb above 30 mmHg, and since yours is sitting right there at 29.2, I don't think we're looking at a pH issue either—if that were the case, your doctor would have likely flagged it immediately during the scan. That being said, it really would be a good idea to track down a cardiologist who can sit down and walk you through the full report, because in my experience, having tricuspid regurgitation isn't exactly considered "normal." Sending you my best!

Thomas Jackson9 said:Well, typically, we start looking at pulmonary pressure once those numbers climb above 30 mmHg, and since yours is sitting right there at 29.2, I don't think we're looking at a pH issue either—if that were the case, your doctor would have likely flagged it immediately during the scan. That being said, it really would be a good idea to track down a cardiologist who can sit down and walk you through the full report, because in my experience, having tricuspid regurgitation isn't exactly considered "normal." Sending you my best!

Yeah, fair point. During his last checkup, the cardiologist told him there wasn't any pulmonary regurgitation.
Does anyone know for sure what "TR max PG" actually refers to on an echocardiogram? Is that specifically pulmonary pressure, or am I misreading this?

swiftscout2 said:Yeah, fair point. During his last checkup, the cardiologist told him there wasn't any pulmonary regurgitation.
Does anyone know for sure what "TR max PG" actually refers to on an echocardiogram? Is that specifically pulmonary pressure, or am I misreading this?

Well, you see, tricuspid regurgitation can sometimes pop up whenever there's any kind of underlying heart damage, though it doesn't necessarily mean pulmonary hypertension is present. Honestly, I always find it's best to just sit down and have a real conversation with the cardiologist; they're the ones who can walk you through the specifics and make sure the treatment plan and medications are headed in the right direction.

Thomas Jackson9 said:Well, you see, tricuspid regurgitation can sometimes pop up whenever there's any kind of underlying heart damage, though it doesn't necessarily mean pulmonary hypertension is present. Honestly, I always find it's best to just sit down and have a real conversation with the cardiologist; they're the ones who can walk you through the specifics and make sure the treatment plan and medications are headed in the right direction.

I get all that, but I’m asking specifically about what tricuspid regurgitation actually entails. I know the PG refers to the peak gradient, but those mmHg numbers are what's sticking in my mind.
We've already been to see the cardiologist three times now. He gave us the prescription, and we're just waiting for the follow-up in a few months.

swiftscout2 said:I get all that, but I’m asking specifically about what tricuspid regurgitation actually entails. I know the PG refers to the peak gradient, but those mmHg numbers are what's sticking in my mind.
We've already been to see the cardiologist three times now. He gave us the prescription, and we're just waiting for the follow-up in a few months.

Anyway, please do keep us posted on how everything turns out... take care!

Thomas Jackson9 said:Anyway, please do keep us posted on how everything turns out... take care!

How long did it take you guys to actually get a diagnosis? Did they catch the regurgitation before the hypertension, or was it the other way around?

swiftscout2 said:How long did it take you guys to actually get a diagnosis? Did they catch the regurgitation before the hypertension, or was it the other way around?

Well, looking back at my very first ultrasound, the doctors told me right away that my pulmonary pressures were incredibly high, even though they couldn't clearly see the valve issues just yet. It’s a bit of a complicated story because my Pulmonary Hypertension actually developed because a congenital heart defect wasn't caught early enough in my life. They ended up sending me in for a cardiac ultrasound primarily because I was dealing with this overwhelming, bone-deep exhaustion and fatigue—I didn't really have any other symptoms to report at the time.

Thomas Jackson9 said:Well, looking back at my very first ultrasound, the doctors told me right away that my pulmonary pressures were incredibly high, even though they couldn't clearly see the valve issues just yet. It’s a bit of a complicated story because my Pulmonary Hypertension actually developed because a congenital heart defect wasn't caught early enough in my life. They ended up sending me in for a cardiac ultrasound primarily because I was dealing with this overwhelming, bone-deep exhaustion and fatigue—I didn't really have any other symptoms to report at the time.

So, does anyone here actually have tricuspid regurgitation? How long have you been managing it, and how are you holding up? From everything I've been reading, you seem like an incredibly positive and upbeat person, thank God! 👍