Pulmonary Arterial Hypertension

Yes - scary.

What was your pressure from your echo and then what was it from the RHC? I know they told me echos can underestimate or overestimate the pressure reading. My shortness of breath has been like you, walking uphill and/or going too fast. Have been bothered by that for years but has gotten worse the last few. Also climbing stairs sometimes. But I have weak knees also so never know if the problem is that or the breathing! I've been on a CPAP for 10 years due to mild sleep apnea. Now don't sleep well without it. You'll get used to it - I use a nasal pillow and not a full mask.

We have similar issues!
Weak knees, mild sleep apnea, mild pulmonary hypertension. Climbing stairs very difficult and again, don’t know if it’s knees or breathing. I was due to have knee surgery when PH discovered so put off knees probably indefinitely.
I also have a fib which docs think caused pulmonary hypertension.
Echo was high pressure - 71. RHC was 28.

Wow, that is a big difference in pressure levels! I'm surprised that with pressure of 28 they are prescribing sildenafil. I thought anything under 40 was considered "normal?" I had an Afib ablation last February and now am on no meds for that (knock on wood) except Xarelto. I was on amioderone for 7 months prior ablation which I have wondered made my PH worse! Have been treated since 2017 for Afib which was intermittent. No one I've seen since the echo findings of PH has suggested it could be from having Afib although I always attributed my breathlessness from Afib even tho I didn't have it all the time. During the last year it got more frequent despite being on fleccainide thus the ablation recommendation. You can drive yourself nuts trying to figure out why you have PH.

Did drs say knee surgery is now not possible for you because of the PH? I had several hours of anesthesia during the ablation with no issues. Where do you live? (I'm in Iowa). It's interesting the difference in medical opinions on this condition. Keep thinking I should go to a specialty center such as Mayo to get a second opinion.

Pulmonologist thought it should be treated aggressively because it was so mild. Doc is young, smart, and related. She did the RHC and cleared me for knee surgery. Both knees bad. I may have eventually but my afib now more often tachycardia is a problem. One thing at a time. All my care with Mass General/Brigham and Women. Can you get a consult at Mayo?
I live in burb of Boston.
Have had 2 ablations and am considering a third. The advent of AI has made ablations shorter and more effective. I am ambivalent as first two not successful. If third fails I am faced with AV Node ablation which makes you entirely dependent on a pacemaker for your heart beat. Oh My!!!

P.S. I believe amioderone which I was also on for several months - contributed to PH. It also caused bradycardia so I had to have a pacemaker. Not to mention elevated liver enzymes and edema.
I never should have taken it for the afib but was convinced by my first cardiologist when I lived on Cape Cod. I can’t really blame him as amioderone is first line drug for treating afib.
My sister also has afib and is on fleccanide.

I'm finding the comments in this thread interesting, as I've been informed I also have pulmonary artery hypertension. I have slight shortness of breath at times on mild exertion, but that could also be due to other reasons, haven't ever seen my pulse ox PO2 levels below 90, and no lung issues I know of, so I wonder how in the world could I have PAH. The first indication of this possible problem was found on several chest CT scans done for cancer surveillance ( I'm in the 5 yr surveillance period post colon cancer) which reported an enlarged pulmonary artery base, and an echocardiogram last year showed a pulmonary artery pressure of 68 mm/Hg. The cardiologist started furosemide ( 20 mg/day), I'm still taking it, it doesn't seem as though things have progressed, thank goodness. I have another echo coming up in about 2 weeks, so we will see if the furosemide helped and where we go from there.
When I saw that diagnosis I read everything I could find about this medical condition, found it so depressing I had to stop. I wondered though, if there were people around who had mild cases of pulmonary hypertension that didn't progress beyond a certain point, how they were treated and was it possible to stay mild or does it always progress. Or do I just have a flaky pulmonary artery with some high pressure and it isn't PAH at all?

They mentioned the sildenafil as one treatment for PH/PAH, so out of curiosity I looked up the costs and the ease of availability of this drug from the pharmacy. It's an older generic drug ( specifically as I read, prescribed as "sildenafil for pulmonary hypertension") so it shouldn't be that much with insurance, but it looks like it depends on the insurance, the pharmacy and I see it requires prior authorization by some plans and other plans don't cover it at all. Just for the heck of it, I looked up the cost of this drug ( sildenafil for pulmonary hypertension) with Good Rx, and seemed as though this drug might cost a lot less using Good Rx without insurance. Hopefully I won't need the drug, but I thought the information might be useful to someone else who does.

Along the drug conversation @marybird and @dalewhit I looked up sildenafil and found two inexpensive generic options at https://www.costplusdrugs.com/ . Have you ever ordered from them?

Marybird, I imagine it will be a relief to get a follow-up echo in a couple of weeks. I hope you report back. Did you doctor say if “furosemide success” would be improvement or trying to keep it from getting worse?

It has to be so nerve-wracking waiting on paperwork to move on and get your cath procedures done @mbarrons60 .

I am including @carculmer in my reply to you since she mentions experience with oxygen. She may have tricks to help. How long have you been on oxygen?

That's Mark Cuban's pharmacy site, I see. I have never used them, no need to as I have an excellent prescription drug plan and the copays are generally less than I'd pay anywhere else.

You know, I never thought to ask and they didn't tell me whether or not lowering of the observed pulmonary artery pressure with furosemide would be an improvement or just a maintenance of the status quo or slowing of an inevitable progression. I must admit I've just been taking the furosemide, trying to watch my diet and exercise, and avoiding the topic other than that, mostly from denial, I guess.

I keep thinking I can't really have this as any mild symptoms I may have occasionally might have other causes as well. I also have A-fib and the side effects of the metoprolol I take for rate control might also cause some of those symptoms. I'm thinking the cardiologist's approach to this will most likely be conservative, as long as I'm mostly asymptomatic, and that would be my preference. We'll see what the upcoming echo shows, and I'll report back when I get those results, either jumping for joy as the arterial pressure has dropped, or crying because it hasn't and we have to go from there.