Pulmonary hypertension

Dear David Morris86, please forgive my delay in getting back to you, but I’ve actually been away for the last three weeks undergoing some medical rehabilitation... I truly want to thank you for all your advice and support; I completely agree with your sentiment that people still don't talk about this condition nearly enough, and there is definitely a lack of awareness out there. In my case, I was diagnosed with PH as a secondary result of ASD—essentially a congenital heart defect that wasn't even caught until I was 27 years old. My doctors mentioned that once we get through the upcoming surgery to correct the heart defect, the pressure should hopefully decrease, though they did caution me that it takes quite a while to see those kinds of changes. I just had an ultrasound about ten days ago, and my PH is currently sitting at around 60

🤣Where did you go for your rehab? I stopped going to the spas because it clashes with my pH levels. Luckily, there’s no need to worry about the RA right now since it's in a dormant phase. I’m keeping it under control with 4mg of Medrol and Rezohin. Are you actually heading in for heart surgery? What’s the specific diagnosis... could you explain a bit? Whatever happens, just stay strong and be brave. Keeping a positive attitude and the will to beat this illness is already half the battle won. Until next time, best regards.🤣😉

It’s been about six months since I underwent heart surgery over at the hospital in Oakland. I was born with a congenital heart defect—what they call an atrial septal defect, essentially a little hole between the two upper chambers. Unfortunately, it wasn't caught early enough, and by the time we realized what was happening, some damage had already occurred, leading to pulmonary hypertension. Because of that, the doctors decided we needed to move quite quickly with the operation. While the surgery did its job in stopping any further damage to my heart, the lingering effects like the PH and the enlargement on the right side are still very much there. My medical team keeps telling me that real improvement takes a significant amount of time and patience. I actually spent some time away at a wellness retreat in Palm Springs for rehabilitation, but honestly, I haven't felt much progress at all lately.

It’s going to be okay, you'll see. Medical science advances every single day, and things that seemed impossible just a few years ago have become standard procedure. Which pulmonary hypertension therapy are you on, and are you actually under control? Are you being treated at Oakland or Jordan? As far as I know, pulmonary hypertension is handled specifically by the specialists over at Jordan under Professor Samaržija’s department... they are really the ones capable of recommending specific PH therapies like Pfizer, Ventavis, and other treatments used for this diagnosis. But then again, I might not have all the facts right. Would you want to hop on a call sometime? Maybe we could exchange more information that way... Best regards, and keep your chin up. It will get better.

I haven't actually started any specific treatment for my Pulmonary Hypertension just yet, mostly because I’m worried it might clash with the heart medication I'm already taking. For now, I’ve been sticking with my cardiologist over at Oakland, who's been great. The doctors initially thought the PH might just clear up on its own once the surgery was behind me, but unfortunately, that wasn't quite the case. I have follow-up appointments scheduled in about three months, so hopefully, by then, we'll have a much clearer roadmap of what the next steps look like. By the way, are you currently working, and what kind of field are you in? I'm actually out on extended medical leave right now, and I'm facing a functional capacity assessment soon. There's this lingering concern that I won't be able to return to my old job in the textile industry. As for swapping phone numbers, I think I'd rather skip that part for now—I had some pretty unpleasant experiences recently and would prefer to keep things here.

🙂Understood regarding the phone situation. I’m going to send you a DM now with the answers to your questions—some of which are a bit personal. Please let me know if it goes through okay... I'm certainly no tech wizard. If it fails, I'll just give you my cell number instead. Check your inbox and let me know.🙂

Hi there! I just received your private message, and I really wanted to say thank you so much for reaching out🙂I’ll be sure to get back to you once I have some actual news—basically, once I’ve cleared my next round of medical checkups and the official disability assessment from Social Security. To be honest, if there were any other way to handle this situation, I wouldn’t be looking at retirement at all... I can't help but feel like 28 is just a bit too young to be calling myself a retiree, don't you think? Anyway, I'll catch up with you next time I'm online. Warm regards!👋

Alright. Talk soon. Best regards.🙂🙂🙂Even if you do retire, you'll probably just spend your time crocheting, gossiping with the other retirees, going on trips, or just praying... Just kidding, I'm just trying to lighten your mood. You know how it is; everything in life has two sides, the good and the bad. In any case, you need to weigh your priorities. Put your health first. Everything else will fall into place eventually. You'll see.

Thomas Jackson9 said:Hi there! I just received your private message, and I really wanted to say thank you so much for reaching out🙂I’ll be sure to get back to you once I have some actual news—basically, once I’ve cleared my next round of medical checkups and the official disability assessment from Social Security. To be honest, if there were any other way to handle this situation, I wouldn’t be looking at retirement at all... I can't help but feel like 28 is just a bit too young to be calling myself a retiree, don't you think? Anyway, I'll catch up with you next time I'm online. Warm regards!👋

Don't sweat it—it's all just paperwork anyway... you aren't exactly getting that Social Security check tomorrow, right?

mistyranger51 said:Don't sweat it—it's all just paperwork anyway... you aren't exactly getting that Social Security check tomorrow, right?

I mean, I know the system isn't exactly known for being generous, but I would be so incredibly grateful if they’d at least approve some kind of vocational retraining, because honestly, trying to start over from scratch is such an uphill battle😕 after nearly ten years of contributing to the workforce... and as for my old career, I might as well kiss that goodbye entirely... it feels like pensions are reserved only for those with deep pockets or people who are facing truly dire health crises...👎

Thomas Jackson9 said:I mean, I know the system isn't exactly known for being generous, but I would be so incredibly grateful if they’d at least approve some kind of vocational retraining, because honestly, trying to start over from scratch is such an uphill battle😕 after nearly ten years of contributing to the workforce... and as for my old career, I might as well kiss that goodbye entirely... it feels like pensions are reserved only for those with deep pockets or people who are facing truly dire health crises...👎

Honestly, they really ought to be giving you that—no question about it.

I’m looking for someone who actually knows their stuff to tell me if these results point toward pulmonary hypertension.
I'm 26, weigh about 198 lbs, and I stay pretty active with sports.
Let me start from the beginning... for the last six months, my lifestyle was pretty rough. I was working night shifts, barely sleeping during the day, and drinking alcohol on occasion. About 20 days ago, right after a night shift, I had two coffees—even though I don't usually drink coffee—and while I was driving home from work, things just went south. I felt terrible... intense restlessness, fear, this dull headache near my cerebellum, chest pain, shortness of breath... my blood pressure hit 180/80. Things have been stressful lately too, facing layoffs, debt, and all that.
I went to see my doctor, and after taking some anti-anxiety meds, my blood pressure settled down. My EKG showed some occasional skipped beats.
The next day, I went in for blood work, and the results weren't great.
I'll just list the abnormal ones: HDL 1.51, LDL 4.7, ALT 56, GGT 92, Urea 10, Creatinine 158, Urate 450, Sodium 135.
Urinalysis: Leukocytes 25/uL, Protein 0.75 g/L.
MCV: 79.6.
Heart and lung imaging came back normal.

The prognosis looked pretty grim at first, but after more tests, getting some rest, and taking medical leave, things improved. It seems like it might have just been a temporary reaction to extreme exhaustion, lack of sleep, and the alcohol...
The follow-up labs were: creatinine 96, ferritin 161, calcium 2.72, phosphorus 1.01.
Creatinine clearance: 2.2 ml/s (Ref: 1.5-2.3).
Urinalysis was normal, but 24-hour proteinuria was 0.381g/day—slightly elevated.
Blood gas levels: pH 7.397, pCO2 5.80, pO2 7.83, actual bicarbonate 26.1, BE +1.0, oxygen saturation 90.3%, standard bicarbonate 27.5. CRP 0.4, iron 9, TIBC 73.3, UIBC 64.3.

What really worries me is this pO2 of 7.83 (Ref: 9.33-13.3) and the oxygen saturation being 90.3% (Ref: 92-99%). The pCO2 is within range at 5.80 (Ref: 4.66-6.21).
Ever since I was a kid, I've had a deviated septum from a broken nose, so I can't breathe properly through my nose. Being a soccer player, I've always felt a bit short of breath.
I was reading online and started seeing symptoms that match pulmonary hypertension, and it really scared me. Those symptoms include chest pressure, shortness of breath, occasional headaches, and sometimes trouble sleeping (though not sleep apnea).
I also read about high red blood cell counts and low platelets, and I'm wondering how much of a difference those numbers actually make. My red blood cells are 5.25 (Ref: 3.86-5.72) x 10^12/L, and my platelets are 247 (Ref: 158-424) x 10^9/L.
So, they're both within the normal range.
I still play soccer, and when I'm running, I don't have many issues other than getting winded, which happens to everyone. I'm planning to get surgery for my deviated septum soon. I don't smoke.
I would really appreciate it if someone knowledgeable could give me some advice.
I still need to get an IVP, a Holter monitor, and a funduscopic exam, so I won't be seeing the doctor again anytime soon.
Should I go back to my doctor immediately, or is there no real need? I'm currently taking 25mg of Nibel once a day for hypertension, and I was also taking Misar once a day.
Thanks for any help, and sorry for such a long, exhausting post...

Hey Fran, I’ve been dealing with pulmonary hypertension for almost two years now, and if I had to guess, I don't think you're actually showing the typical symptoms for it. Usually, if you had it, they’d see a significantly enlarged pulmonary artery on a chest X-ray, which would be a pretty clear giveaway. Have you had an echocardiogram done yet? Honestly, I think getting an ultrasound of your heart would clear everything up and give the doctors some real peace of mind. From what I understand, people struggling with pulmonary hypertension typically deal with lower blood pressure and a heavy sort of pressure in their chest, plus they tend to hit a wall really quickly whenever they try any kind of physical exertion. Given the specific symptoms you described, it seems much more likely that you're facing some other kind of cardiac issue rather than pulmonary hypertension itself.

I’ve been dealing with certain issues for quite a while now—about seven years, actually. My blood pressure meds aren't doing much to help, and honestly, I’m starting to lose my mind because I just can't figure out what's going on. It’s possible that a severe deviated septum is playing a huge role in all of this. I’m planning to get it fixed as soon as possible since I've been struggling for way too long...
Thanks so much for getting back to me.... how have you been holding up? How are you managing with everything?
I've been reading up on this condition online, and it looks like a real nightmare. But then again, they seem to be discovering something new all the time, so I suppose you just have to stay optimistic...

Frank Lee15 said:I’ve been dealing with certain issues for quite a while now—about seven years, actually. My blood pressure meds aren't doing much to help, and honestly, I’m starting to lose my mind because I just can't figure out what's going on. It’s possible that a severe deviated septum is playing a huge role in all of this. I’m planning to get it fixed as soon as possible since I've been struggling for way too long...
Thanks so much for getting back to me.... how have you been holding up? How are you managing with everything?
I've been reading up on this condition online, and it looks like a real nightmare. But then again, they seem to be discovering something new all the time, so I suppose you just have to stay optimistic...

I’m doing alright, all things considered. These seasonal shifts in the weather tend to throw me a bit of a curveball, but I'm doing my best to just live life as normally as I can. You're right, though, the condition is quite difficult, and if it weren't for the complications it causes, I wouldn't have been placed on disability retirement, as I really have to steer clear of any heavy lifting or intense physical exertion. But honestly, when you maintain a positive outlook, everything just feels a little easier to bear.

Hello, I hope there are still some people visiting this page; I just stumbled upon it today.
My name is Jose Turner58, and I am living with pulmonary hypertension. I have been on medication for a little over a year now, specifically taking Pfizer, Corvitol, and Lasix. I had an ASD and underwent surgery nearly five years ago, but my PH hasn't resolved itself, even though I'm only 21.

I would really appreciate the chance to talk with you all, as I find that conversation can be quite helpful.

Talk soon,

Jose Turner58 said:Hello, I hope there are still some people visiting this page; I just stumbled upon it today.
My name is Jose Turner58, and I am living with pulmonary hypertension. I have been on medication for a little over a year now, specifically taking Pfizer, Corvitol, and Lasix. I had an ASD and underwent surgery nearly five years ago, but my PH hasn't resolved itself, even though I'm only 21.

I would really appreciate the chance to talk with you all, as I find that conversation can be quite helpful.

Talk soon,

Hey there... Hi Eva, I actually went through an ASD surgery about a year and a half ago myself, and much like you, my PH didn't resolve after the procedure either; mine is sitting somewhere around 60mmHg right now. I haven't started any specific PH therapy yet, mostly because my doctor seems to think it might be a bit too early for that... anyway, how are you doing? How have you been managing with the PH? What does your pressure look like lately?

Hello, Thomas Jackson9,

I am doing alright, though things aren't exactly easy—especially once you realize this isn't something you can simply cure, but rather something you have to learn to live with. My pulmonary artery pressure stays around 50mmHg even while I'm on medication.
My doctor has prescribed Bosentan, but I haven't received it yet. I'm honestly not sure if I will actually get it, as we are still waiting for the FDA to approve certain aspects of it, and I suppose I don't know if that will even happen.
By the way, I am originally from the Midwest.
Do you have a cardiologist monitoring your progress? I certainly do, since I feel they might not always have all the answers regarding this specific condition.
I believe in Germany, they have specialists who focus exclusively on PH.
Talk soon,
Best,

Jose Turner58 said:Hello, Thomas Jackson9,

I am doing alright, though things aren't exactly easy—especially once you realize this isn't something you can simply cure, but rather something you have to learn to live with. My pulmonary artery pressure stays around 50mmHg even while I'm on medication.
My doctor has prescribed Bosentan, but I haven't received it yet. I'm honestly not sure if I will actually get it, as we are still waiting for the FDA to approve certain aspects of it, and I suppose I don't know if that will even happen.
By the way, I am originally from the Midwest.
Do you have a cardiologist monitoring your progress? I certainly do, since I feel they might not always have all the answers regarding this specific condition.
I believe in Germany, they have specialists who focus exclusively on PH.
Talk soon,
Best,

I am seeing a cardiologist regularly, and for the moment, I'm doing okay, though I truly agree with you that it’s incredibly difficult to wrap your head around the fact that you're dealing with an incurable illness... fortunately here in the States, those medications have been approved, though patients still had to fight quite a hard battle to actually get access to them... and we do have specialists dedicated specifically to PH at the pulmonary clinics... I really hope you manage to get your medication sorted out soon... best wishes.

I’m currently living in the States and I’m 26. My condition is considered primary, which essentially means doctors can't pinpoint the actual root cause of the issue. Back in January, I had a cardiac catheterization... my blood pressure was sitting at 60mm... they put me on some medications and managed to bring it down to 42mm. Right now, I’m not taking any prescription drugs at all; instead, I’ve been relying on various herbal remedies. Honestly, I’m pretty wary of accepting whatever the doctors prescribe because I worry about the side effects. I’m curious to know how you all eventually reached a diagnosis... in my case, it was just a simple cold that somehow led them to discover this whole mess. I have two kids, and the doctors suggested it might be a lingering effect from pregnancy... but who knows, really?
Emma, I see we’re both in our 20s... it’s nice to find someone else going through this, though I certainly wish it weren't because of this ridiculous illness. 😢
My pressure hit 88mm once, and I managed to bring it down to 60mm using different herbal treatments.
They tell me this disease tends to run in families, but as far as I know, nobody else in my family deals with this. :-/
I would love to stay in touch with you all... my email is Matthew Lewis7@gmail.com... if anyone wants to chat or has questions, I'm here for you.
I'm originally from Canada (Gary), but I've been living in the US for over 13 years now (Atlanta).