New Pulmonary Hypertension Diagnosis

If you don't believe the diagnosis is correct, get a second opinion. Doctors can be mistaken and it could have been an off day for you. For example if you had issues with congestion, it might have skewed the results.

I had oxygen 24/7 and for a time it wasn't too bad (at that time my resting oxygen level was 80%), I had a very long tube that I could just leave the machine in my bedroom and walk up and down the stairs and go pretty much any where in the house. When I got worse, I was no longer able to go up and down the stairs and could only get my oxygen up to 80% while resting on 5 liters of oxygen (highest the machine I had would go up to). Then it got worse and I had to be hospitalized so that I could go on 30 liters of oxygen. Shortly afterwards I received my double lung transplant. However, my issue was that I had caught COVID and it destroyed my lungs.

Not everyone needs to be on oxygen all of the time. Some people only need it when they are exerting themselves. I had a small portable oxygen concentrator for when I was out of the house. Other people use the tanks. I had an issue that the tanks always seemed to leak, which is why I didn't like to use them. I have also heard of some people that go to raspatory therapy. Since you aren't too bad, this might be something you might want to explore.

I wish you a lot of luck. Try to give all your worries to God, it won't help anything for you to worry.

Hi, @carculmer.
I'm so sorry for the challenges that you've been dealing with. I understand how you feel about conditions seemingly popping up out of the blue...seemingly without warning. I have had similar experiences. There's a saying: Life comes at you fast. And the older I get the more I see the reality of that.

That being said, all of these changes can be overwhelming. I know I've been overwhelmed by them from time to time, and it seems like that's how you're feeling right now. But pause...and take a deep breath.
You will get through this, whatever it is.

You have already taken the most important first step, which is self-referring to a pulmonologist. I do not have any experience with being on oxygen, so I can't address what it's like you being tied to oxygen all the time. Others on Connect will be able to address that, and I see you've already had a response from @chickytina. In the meantime, don't give up hope. As you are treated your condition could possibly improve to the point where you might not need oxygen any longer or only need to use it intermittently. I'm not a doctor, so I can't say for sure. But I am remaining hopeful for you and wishing you the very best as you navigate through this new challenge. Hugs! 💕

Hi, These conditions do come on in a flash . A year and a half ago I walked up 15 steps from my lower level. My legs melted under me . I went to the ER. Step test , I was 83 . They put me on oxygen and did a cat. Told me I had stage 4 Emphysema. That Fast !! They did a right heart catherisation because it came on so suddenly . It showed no problems . I have been on 24/7 oxygen since . I am on 4 liters day, and 3 liters night . I have a 75 foot line and I move around my house , I am still going up and down , but slower . I am on Trelegy Elipta 200. I also take Musinex 1200 every 12 hours . I have some mucus but not a lot . If I go to the shops I use a cart with a tank . I tried Portable concentrators with pulse “feed” - they aren’t enough for me . The truth is , no portable can deliver over 3 liters per. They are oversold and folks can hurt themselves trying to use them . I am almost 80. I was shocked too. But- The last thing one needs is anxiety. Try very hard to take this event in stride . It is tough to take , but I am 80 hard years old . Blessed Be, I send Peace and love.☮️ Crystal

Pulmonary hypertension is serious and a right heart cath is the gold standard for diagnosing it. Because of SOB I had one but they were not able to complete it so I did a Echo Transthoracic TTE which had levels indicative of pulmonary hypertension, I am on O2 for exercise and sleep, not for sitting on the sofa. My O2 drops when I start moving around. I had overnight oximetry, test for O2 with exercise, and usual pulmonary function tests to determine when I needed supplemental O2
It depends on the cause of the pulmonary hypertension. My PH is group 3 caused by pulmonary fibrosis so I am followed by a Pulmonologist with that specialty (remember to see a pulmonologist who has subspecialty in the correct area)

You are right about portable concentrators! I have a prescription for 2liters continuous flow for sleep and exercise. I have to set my portable at highest level (6) when I do treadmill if I want to keep my O2 high. "Small print" says pulse flow not the same as continuous flow and one needs to understand that!

I have pulmonary fibrosis, that has lead to a recent diagnosis of pulmonary hypertension. I have been dealing with the fibrosis for just under 3 years, after spending 34 days in the hospital in be. 2022. Then two trips to Mayo Rochester. I have seen scores of doctors (all have been wonderful). One of them told me that the heart and lungs are like a married couple, if one of them gets sick, eventually the other one will. I don’t know anything about afib, and won’t pretend to. I do know about low saturation levels and living life in Oxygen 24/7. I am 63, and was very physically active prior to my current situation. Though I still strive to be active (as much as possible) daily. Working full-time, vacationing, walking, spending time with friends and family. Enjoyed a wonderful night out with my wife last. Right celebrating our 40 year anniversary. Living with supplemental oxygen has definitely been an adjustment (it is everyday), but I have discovered that it’s not impossible, and I am grateful for life! You don’t get where you are in life, without facing challenges, You can do this!!

The right heart cath, will allow the doctor to determine the extent of the hypertension issue. Mine heart cath, was actually done by a pulmonary hypertension specialist. It was caught very early in my case, and I am currently being treated with Tyvaso, and it seems to be helping!