Pulmonary hypertension

Hi there, ec1984
I’ve been managing pulmonary hypertension for quite some time now—successfully, too. If you're looking to trade stories or insights, I’m more than happy to share everything I've learned... Unfortunately, I know a bit too much about this condition and several others I've been battling for years. Feel free to reach out to me, or anyone else interested in the topic, at vidabeg@ hotmail.com. Best regards...

David Morris86 said:Hi there, ec1984
I’ve been managing pulmonary hypertension for quite some time now—successfully, too. If you're looking to trade stories or insights, I’m more than happy to share everything I've learned... Unfortunately, I know a bit too much about this condition and several others I've been battling for years. Feel free to reach out to me, or anyone else interested in the topic, at vidabeg@ hotmail.com. Best regards...

Greetings.
My mother was recently diagnosed with high pulmonary pressure, which has unfortunately started affecting her heart as well. My main concern right now is whether accessing the necessary treatment will actually be an option; I've heard whispers that the medications are prohibitively expensive, and since she’s 72, I can't help but feel like our healthcare system views treating the elderly as a poor investment. Is there any way to determine exactly how much damage this hypertension has already done to her pulmonary arteries? More importantly, I’m wondering if there are any natural remedies, supplements, or even bioenergy therapies that could offer some support in managing this illness. Thanks in advance.

Samuel Nelson28 said:Greetings.
My mother was recently diagnosed with high pulmonary pressure, which has unfortunately started affecting her heart as well. My main concern right now is whether accessing the necessary treatment will actually be an option; I've heard whispers that the medications are prohibitively expensive, and since she’s 72, I can't help but feel like our healthcare system views treating the elderly as a poor investment. Is there any way to determine exactly how much damage this hypertension has already done to her pulmonary arteries? More importantly, I’m wondering if there are any natural remedies, supplements, or even bioenergy therapies that could offer some support in managing this illness. Thanks in advance.

I have to say, I respectfully disagree with the idea that our healthcare system finds it unprofitable to treat older patients; I think we’re all essentially in the same boat when it comes to receiving care. My best advice would be to simply listen closely to what the doctors suggest and follow their guidance precisely—I truly don't believe they would let you down or deny necessary care based on age. Regarding the measurement of pulmonary pressure, a cardiac ultrasound or a catheterization procedure can clearly show both the pressure levels and the actual condition of the blood vessels. If she has already received this specific diagnosis, she has likely already undergone one of those tests. Generally speaking, pulmonary pressure is considered elevated once it exceeds 30mmHg. For context, my own readings are currently sitting somewhere around 60mmHg. Also, just as a heads-up, there is a specialized referral center for treating PH located within the pulmonary department at Silver Dollar Hospital in Washington, D.C.

Thomas Jackson9 said:I have to say, I respectfully disagree with the idea that our healthcare system finds it unprofitable to treat older patients; I think we’re all essentially in the same boat when it comes to receiving care. My best advice would be to simply listen closely to what the doctors suggest and follow their guidance precisely—I truly don't believe they would let you down or deny necessary care based on age. Regarding the measurement of pulmonary pressure, a cardiac ultrasound or a catheterization procedure can clearly show both the pressure levels and the actual condition of the blood vessels. If she has already received this specific diagnosis, she has likely already undergone one of those tests. Generally speaking, pulmonary pressure is considered elevated once it exceeds 30mmHg. For context, my own readings are currently sitting somewhere around 60mmHg. Also, just as a heads-up, there is a specialized referral center for treating PH located within the pulmonary department at Silver Dollar Hospital in Washington, D.C.

Thank you so much. One more thing—does pulmonary pressure stem from heart disease, or is it actually the other way around? And who should be the primary point of contact moving forward, a cardiologist or a pulmonologist?

Does anyone actually find success using natural supplements for treatment? I’m thinking along the lines of things like horseradish, parsley, or maybe hawthorn for heart health and such. If anyone here has any real-world experience or insights on this, please reach out and let me know.

Samuel Nelson28 said:Thank you so much. One more thing—does pulmonary pressure stem from heart disease, or is it actually the other way around? And who should be the primary point of contact moving forward, a cardiologist or a pulmonologist?

Well, most often it does stem from heart conditions, though there are plenty of other underlying health issues that can trigger it, and while it’s quite rare, it can also present as a primary disease on its own. On the more holistic side of things, some people have recommended black seed oil to me; I've heard it can be quite helpful for maintaining pH levels, and you can easily find it at any local health food store here in the States. As for the medical route, I’d say your best bet is to start with a cardiologist, and they’ll likely be the ones to refer you to a specialist if needed.

Samuel Nelson28 said:Greetings.
My mother was recently diagnosed with high pulmonary pressure, which has unfortunately started affecting her heart as well. My main concern right now is whether accessing the necessary treatment will actually be an option; I've heard whispers that the medications are prohibitively expensive, and since she’s 72, I can't help but feel like our healthcare system views treating the elderly as a poor investment. Is there any way to determine exactly how much damage this hypertension has already done to her pulmonary arteries? More importantly, I’m wondering if there are any natural remedies, supplements, or even bioenergy therapies that could offer some support in managing this illness. Thanks in advance.

Look, if you want actual answers instead of useless nonsense, you need to provide specifics.
To give you anything helpful, I need to see the TTE results, the full diagnosis, EKG findings (is there P-pulmonale? signs of right heart strain? conduction blocks?), blood pressure readings, O2 saturation levels, arterial blood gas if they ran one, her current medication list, symptoms, and anything else relevant.

vividsailor7 said:Look, if you want actual answers instead of useless nonsense, you need to provide specifics.
To give you anything helpful, I need to see the TTE results, the full diagnosis, EKG findings (is there P-pulmonale? signs of right heart strain? conduction blocks?), blood pressure readings, O2 saturation levels, arterial blood gas if they ran one, her current medication list, symptoms, and anything else relevant.

My mother is currently admitted to the hospital, so I am just waiting on the official paperwork once she is discharged. Verbally, the doctors have indicated that the issue stems from pulmonary pressure and an elevated heart rate. It seems they’ve run all the necessary tests, and as far as treatment goes, she’s only being given diuretics because there was significant fluid buildup around the pericardium. My assumption is that she will eventually require therapy targeting both the heart and the pressure itself; diuretics are merely a way to manage the immediate symptoms, but they don't actually address the underlying causes of the fluid retention—especially since the pulmonary pressure has clearly strained the heart and led to this systemic failure. Everything essentially traces back to that initial rise in pulmonary pressure.

Samuel Nelson28 said:My mother is currently admitted to the hospital, so I am just waiting on the official paperwork once she is discharged. Verbally, the doctors have indicated that the issue stems from pulmonary pressure and an elevated heart rate. It seems they’ve run all the necessary tests, and as far as treatment goes, she’s only being given diuretics because there was significant fluid buildup around the pericardium. My assumption is that she will eventually require therapy targeting both the heart and the pressure itself; diuretics are merely a way to manage the immediate symptoms, but they don't actually address the underlying causes of the fluid retention—especially since the pulmonary pressure has clearly strained the heart and led to this systemic failure. Everything essentially traces back to that initial rise in pulmonary pressure.

Look, until you actually have the official documentation in your hands—and more importantly, once she is actually discharged—nobody can say anything meaningful about this situation.

David Morris86 said:Hello to everyone visiting this page. My name is Vida, and I’d like to share some thoughts and experiences regarding pulmonary hypertension—a very rare condition... Along with this diagnosis, I also deal with rheumatoid arthritis and all the complications that come with it. I’m staying optimistic about my situation. How about you? 🙂😛🙂

Look, speaking from firsthand experience here—and trust me, I know what I'm talking about—you can actually end up with pulmonary hypertension because of a nurse's mistake. I’m telling you, it’s possible. I’m a nurse myself, and I ended up developing pulmonary hypertension because of a mistake made by another nurse... It's a weird situation, right? But honestly, I don't think the nurses are entirely to blame—it's not like they were taught how to avoid this specific thing in nursing school or anything...
So, most of you probably know that when you're getting IV therapy—you know, those injections or infusions—they use IV catheters or cannulas. And as anyone who’s been through it knows, those things stay sitting right there in your vein after the first use. Now, even though they’ve been using them in America for over 20 years, I could never find a single shred of medical literature before July 2011 that actually laid out a protocol for maintaining those multi-use cannulas left in the vein... nothing. Then, in July 2011, an American nursing education journal finally published this piece detailing everything about cannulas, including the actual instructions: you’re supposed to flush the cannula immediately with diluted heparin to stop a clot from forming inside. See, if a nurse disconnects an infusion and doesn't apply pressure to the vein above the cannula with their finger, blood just surges out under pressure until they cap it off... and boom, you’ve got a clot that makes the cannula completely useless. If you flush that thing with diluted heparin right away, you don't get the clot. Anyone who’s ever been hooked up to an IV knows how nurses will try to "fix" a clogged cannula by forcefully flushing it with saline—I mean, I’ve seen it happen! They did it to me, too, even though I begged them multiple times just to swap the cannula out for a new one. Well, because I decided to push back against that kind of practice, they basically kicked me out of the hospital on the spot... which was wild, considering they had refused to discharge me earlier that morning because I still needed more tests. Fast forward to the next day, I'm at home trying to get out of bed, and suddenly—bam—a pulmonary embolism hits me. For a split second, my breath just hitched and I felt this intense, sharp stabbing pain in my chest that wouldn't quit. It was all caused by just one single clot that happened to be big enough to do real damage. It makes you wonder, though... what happens to all those patients who have clots released into their circulation over and over again? Most people don't even recognize the feeling of an embolism happening because nobody ever tells them what to look for. This was my first time being hospitalized in my life, and since I was at a facility where I didn't work, they didn't know me—and it ended up being a near-death experience for me. I had just moved to the States from abroad, and I used to work at a hematology clinic... even though we flushed the cannulas, it was common knowledge that sometimes they just weren't cleaned properly. I actually had plenty of chances to see it firsthand while clearing out clogged cannulas myself. And let me tell you... those clots can get pretty long. Like, up to 5 cm long...
So, after dealing with all these symptoms for eight months, I finally dragged myself to the doctor... and let me tell you, it took another entire year just to get prescribed Martefarin. It was an absolute nightmare navigating the medical system—honestly, there were some seriously dark moments while I was bouncing from specialist to specialist. Most of them just flat-out denied that an embolism caused by a cannula clot was even possible. I tried to wrap my head around their dismissal, but things went south fast when doctors actually *did* see evidence in my tests supporting what I was saying, only to shrug and basically say, "Sorry, I can't help you... go find someone else." It got so bad that I ended up being involuntarily committed to a psych ward because they wouldn't accept my medical findings—and then, through some forced psychiatric evaluation, they slapped me with a personality disorder diagnosis just because I wouldn't back down about my own clinical results. It’s surreal, really... I’m just incredibly thankful to God that I finally ran into a doctor who actually had a heart and gave me the treatment I needed. But even with that, we all know this disease is progressive and there's no cure. You can probably imagine how much of a weight that puts on you...
It’s honestly bizarre watching nurses flush out cannulas that are clearly choked with clots—acting like they aren't making a massive mistake—but what's even weirder is that the doctors actually back them up... claiming our bodies just have this magical ability to dissolve a clot instantly. Well, newsflash: that's not how it works. This is exactly why patients who end up with an embolism because of this practice don't get treated properly, and they just suffer through chronic thromboembolism and pulmonary hypertension. In my opinion, only a tiny fraction of patients actually get diagnosed with pulmonary hypertension once it hits the advanced stages—and usually, they call it "idiopathic," which is just medical speak for "we have no clue why this happened"—while most people just end up with some other diagnosis or, you know, die suddenly. For instance, back when I was a patient at Jordanovac Hospital, there was this woman admitted from a town outside of St. Louis who had been treated for anxiety for five years straight, only for Dr. Samaržija to finally diagnose her with pulmonary hypertension. I ended up leaving... I don't know how things turned out for her, but I know she was headed for an emergency lung transplant.
I really hope sharing this helps anyone else who’s been screwed over by this same mistake... and I hope my colleagues take a long, hard look at themselves and stop these lethal procedures. It’s just heartbreaking, especially since the healthcare oversight commission here in America doesn't even consider flushing a clogged cannula to be wrong—or maybe they just don't want to take the blame for it.

granitenomad16 said:Look, speaking from firsthand experience here—and trust me, I know what I'm talking about—you can actually end up with pulmonary hypertension because of a nurse's mistake. I’m telling you, it’s possible. I’m a nurse myself, and I ended up developing pulmonary hypertension because of a mistake made by another nurse... It's a weird situation, right? But honestly, I don't think the nurses are entirely to blame—it's not like they were taught how to avoid this specific thing in nursing school or anything...
So, most of you probably know that when you're getting IV therapy—you know, those injections or infusions—they use IV catheters or cannulas. And as anyone who’s been through it knows, those things stay sitting right there in your vein after the first use. Now, even though they’ve been using them in America for over 20 years, I could never find a single shred of medical literature before July 2011 that actually laid out a protocol for maintaining those multi-use cannulas left in the vein... nothing. Then, in July 2011, an American nursing education journal finally published this piece detailing everything about cannulas, including the actual instructions: you’re supposed to flush the cannula immediately with diluted heparin to stop a clot from forming inside. See, if a nurse disconnects an infusion and doesn't apply pressure to the vein above the cannula with their finger, blood just surges out under pressure until they cap it off... and boom, you’ve got a clot that makes the cannula completely useless. If you flush that thing with diluted heparin right away, you don't get the clot. Anyone who’s ever been hooked up to an IV knows how nurses will try to "fix" a clogged cannula by forcefully flushing it with saline—I mean, I’ve seen it happen! They did it to me, too, even though I begged them multiple times just to swap the cannula out for a new one. Well, because I decided to push back against that kind of practice, they basically kicked me out of the hospital on the spot... which was wild, considering they had refused to discharge me earlier that morning because I still needed more tests. Fast forward to the next day, I'm at home trying to get out of bed, and suddenly—bam—a pulmonary embolism hits me. For a split second, my breath just hitched and I felt this intense, sharp stabbing pain in my chest that wouldn't quit. It was all caused by just one single clot that happened to be big enough to do real damage. It makes you wonder, though... what happens to all those patients who have clots released into their circulation over and over again? Most people don't even recognize the feeling of an embolism happening because nobody ever tells them what to look for. This was my first time being hospitalized in my life, and since I was at a facility where I didn't work, they didn't know me—and it ended up being a near-death experience for me. I had just moved to the States from abroad, and I used to work at a hematology clinic... even though we flushed the cannulas, it was common knowledge that sometimes they just weren't cleaned properly. I actually had plenty of chances to see it firsthand while clearing out clogged cannulas myself. And let me tell you... those clots can get pretty long. Like, up to 5 cm long...
So, after dealing with all these symptoms for eight months, I finally dragged myself to the doctor... and let me tell you, it took another entire year just to get prescribed Martefarin. It was an absolute nightmare navigating the medical system—honestly, there were some seriously dark moments while I was bouncing from specialist to specialist. Most of them just flat-out denied that an embolism caused by a cannula clot was even possible. I tried to wrap my head around their dismissal, but things went south fast when doctors actually *did* see evidence in my tests supporting what I was saying, only to shrug and basically say, "Sorry, I can't help you... go find someone else." It got so bad that I ended up being involuntarily committed to a psych ward because they wouldn't accept my medical findings—and then, through some forced psychiatric evaluation, they slapped me with a personality disorder diagnosis just because I wouldn't back down about my own clinical results. It’s surreal, really... I’m just incredibly thankful to God that I finally ran into a doctor who actually had a heart and gave me the treatment I needed. But even with that, we all know this disease is progressive and there's no cure. You can probably imagine how much of a weight that puts on you...
It’s honestly bizarre watching nurses flush out cannulas that are clearly choked with clots—acting like they aren't making a massive mistake—but what's even weirder is that the doctors actually back them up... claiming our bodies just have this magical ability to dissolve a clot instantly. Well, newsflash: that's not how it works. This is exactly why patients who end up with an embolism because of this practice don't get treated properly, and they just suffer through chronic thromboembolism and pulmonary hypertension. In my opinion, only a tiny fraction of patients actually get diagnosed with pulmonary hypertension once it hits the advanced stages—and usually, they call it "idiopathic," which is just medical speak for "we have no clue why this happened"—while most people just end up with some other diagnosis or, you know, die suddenly. For instance, back when I was a patient at Jordanovac Hospital, there was this woman admitted from a town outside of St. Louis who had been treated for anxiety for five years straight, only for Dr. Samaržija to finally diagnose her with pulmonary hypertension. I ended up leaving... I don't know how things turned out for her, but I know she was headed for an emergency lung transplant.
I really hope sharing this helps anyone else who’s been screwed over by this same mistake... and I hope my colleagues take a long, hard look at themselves and stop these lethal procedures. It’s just heartbreaking, especially since the healthcare oversight commission here in America doesn't even consider flushing a clogged cannula to be wrong—or maybe they just don't want to take the blame for it.

This is exactly what my mother went through. She was hospitalized back in month five, only to be discharged in a truly precarious state, exhibiting all the classic symptoms of PH that everyone somehow managed to overlook, despite her being in a specialized pulmonary hospital. As her condition steadily deteriorated, she ended up in the ER during month seven, where an echocardiogram finally revealed a high PH level of 65. Instead of addressing the root cause, they just managed the symptoms with diuretics and sent her home. It wasn't until month ten that we finally connected with a true specialist—an exceptional physician who identified that the PH was actually caused by pulmonary emboli. It seems highly probable that she suffered an embolism back in month five while she was still under hospital care. She has since started on blood thinners, and honestly, she seemed reborn after just two days on them. Her PH levels remain elevated for now, but we are waiting two months to evaluate the medication's full impact. If the numbers don't drop, her next step will likely be a prescription for Viagra, provided insurance approves it.

Hey there!

If anyone out there is dealing with pulmonary hypertension and wants to help me get an association off the ground, please hit me up at this email: nikolina.hsrb@gmail.com.

So, I think the European Society of Pulmonary Hypertension is running this program...Check out this site: http://www.phaeurope.org/! It’s pretty interesting stuff, I guess. I guess they're setting up associations all over Europe, and apparently, they help out with both organizing stuff and throwing money at it too.

Thanks!

I figured I’d finally chime in here. A few months back, I got hit with a diagnosis of right heart enlargement and pulmonary hypertension. Right now, my treatment plan is pretty basic—just aspirin, Lasix, and Nebilet. I'm currently stuck in that waiting game, just biding my time until they can get me in for a catheterization. Best,

Hi everyone, especially those of you following this thread
So, my mom has been dealing with high blood pressure for 21 years now, and she just found out she’s also battling pulmonary hypertension. At first, I felt this wave of relief because we finally had an answer for why she’s been feeling so poorly, but then I started digging into things online and honestly, it just left me feeling terrified... My mother is 62, and from everything I've read, the prognosis for people with this diagnosis is pretty grim, regardless of the treatment they receive. Her pulmonary pressure is currently
44 mmHG, and the diagnosis was confirmed via a heart scan. We're living over in Canada at the moment. She’s started her medication, and we have a follow-up with her cardiologist in about two weeks. I'm really hoping some of you might be able to ease my mind a bit and offer some actual guidance...
Thanks in advance

Look, Gerald Martin7, I know that diagnosis is terrifying, but honestly? It’s better to face it now so you can actually do something about it. Your mother’s blood pressure isn't even at that critical level yet; once she gets on the right medication, things should stabilize. Personally, I've been battling pulmonary hypertension for over nine years now—and my pressure is way higher than hers, sitting around 90mmHg—but thanks to the meds available here in the States, I manage to get by. Wishing you guys nothing but the best with the treatment process. If you have any questions at all, just ask. Best,

Angela Green2 said:Look, Gerald Martin7, I know that diagnosis is terrifying, but honestly? It’s better to face it now so you can actually do something about it. Your mother’s blood pressure isn't even at that critical level yet; once she gets on the right medication, things should stabilize. Personally, I've been battling pulmonary hypertension for over nine years now—and my pressure is way higher than hers, sitting around 90mmHg—but thanks to the meds available here in the States, I manage to get by. Wishing you guys nothing but the best with the treatment process. If you have any questions at all, just ask. Best,

Thank you for responding, though it's been three months since the diagnosis and my mother still isn't doing any better... It seems they haven't settled on the right first line of therapy yet, so she has to head back to the cardiologist in a few days. The dry cough is what bothers her most, hitting her every time she stands up or tries to move, while sitting or lying down offers some relief, though the exhaustion remains... I wonder if you deal with these same symptoms, and if the right medication will eventually dial them down...

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.

Douglas Ramirez3 said: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.

Hello there! Well, I have actually been living with a pulmonary hypertension diagnosis for exactly eleven years now, and in my case, it also stemmed from underlying heart issues. For the last three years, I've been receiving my treatment at Jordanovac Hospital, and if I can offer any comfort, it's that you've been sent to exactly the right place at the right time. You really don't want to be wandering around between different clinics aimlessly, because that facility is the premier referral center for the entire country, and believe me when I say you'll receive the absolute best care possible there. If there's anything else on your mind, please feel free to send me a private message. Wishing you all the best!

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.

Douglas Ramirez3 said: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.

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.