Living With PH, (Pulmonary hypertension) - British Lung Foun...

British Lung Foundation
43,891 members50,824 posts

Living With PH, (Pulmonary hypertension)


I am new to this so if I make mistakes please forgive me in advance. I have what Doctors call PH. Pulmonary Hypertension, to which there is no cure at present at least short of a complete lung and heart transplant. I am on Oxygen 24/7 now days. Yeah I went through the denial process as most people do. Figured I didn't need the Oxygen all the time so I didn't need it at all. It just felt like I was out of shape and needed to exercise more to get my strength back. I am outdoors person. I like to hunt, fish and just hike the mountains. My kids could never keep up with me in the mountains when we went hunting. Always telling me to slow down so they could catch up. I was this way until I turned around 61 and that is when I had to start slowing myself down.

If anyone gets to the point where they are feeling out of breath from doing what is normal to them, then they need to get their O2 oxygen levels are at. For most people a reading of 98% O2 is normal. Unless you have COPD and then it is lower range. So please don't think of any of this as a COPD blog, that is a different illness. That was our mistake, when I say our I mean my doctor which is also a friend and myself.

10 Replies

We all like to dream of the silver lining that is waiting for us just around the corner. Then one day you find out that it will never come true. You go into a denial period of there is nothing that bad can happen to me. Living the full and complete dream is going to be different for every one with an illness. However, I wish I could say there is a cure for Pulmonary Hypertension. Sadly enough there is no cure. I am a strong willed person and it hit me just like others that have gone through it. I cried, I went through the denial period, had depressed feelings. Also so much more mentally until I come to the end and realized there was nothing I could do to stop it.

I am going to miss seeing my Grand kids grow up. That is because I married late in life.

in reply to vlarryj77

I need to apologize for not replying to everyone 5 months ago on a different discussion board. I was looking for the real truth behind PH and what I could do to stop it. Anyone that gets better from being diagnosed with PH, not PAH, does not have PH. Sorry for being blunt about it but there is no other way to say it. Those of you that are getting better I am happy for you and yours.

I'm so sorry you have PH. I don't know the extent or severity of your PH, but let me give you some hope. My hubby was diagnosed 7 years ago. Doctors said he probably wouldn't survive more than one year. Refused to accept that. Got in to see a cardiac doctor whom specializes in PH. We work at keeping healthy! Be very careful if your retaining fluids.ask to see a nutritionist to help you with a diet tailored to your needs. There are meds that can be used to help this condition. Also ask for cardiac and or pulmonary rehabilitation. If you can safely go for walks then do so.

My hubby didn't think he'd live long at all, yet he was present for our grandson's birth and he plays with our grandson, now turning 5. We both plan on watching him grow up. Just pace yourself, do what you can and rest.

Although there's no cure (yet), try to be positive (hard to do, I cried for days) stress isn't good for you. Also, start doing whatever it is that you enjoy.

I'm keeping you in my thoughts and prayers. I'm here if you need a friend to vent to.

in reply to Samcar

What do you know, surprises never stop!! Someone that actually knows a bit about PH. I have read on here from others that they are getting better. Going from severe to mild and not realizing that they don't have PH. Samcar I don't know where you live and really doesn't make any difference but I bet it is in California. This is my address if need it:

I have come to terms with my condition. Your hubby sounds like quite the fighter and yes I will live long enough to see mine also.

in reply to vlarryj77

Hi, good to hear you're positive! Attitude and being proactive helps. We're in New Hampshire but go to Boston Massachusetts for care. My husband has numerous issues along with primary pulmonary hypertension. He needs his heart valve repaired ( had 5 bypass over 20years ago), he's in kidney failure, teetering on stage 4 almost 5, so dialysis will be soon. He's diabetic. Heart valve will be repaired once new surgery techniques are certified at Boston hospital. It's a newer procedure that avoids opening the chest as he will not survive that . So there is hope, he and others are living happily. Check into the medications, I don't know if you would benefit from them but it's worth asking. They are very expensive but if you're in the states there are a couple of organizations that give grants to pay your portion or copay in full. My husband is unable to take the medications because it made the kidney failure worse but it is worth trying.

Keep me posted. Praying for you...

Sorry about so many bypasses. That has to take a toll on you as well. Your a very strong Woman, Wonder Woman in my eyes!! My picture is when I developed shingles and thought it was a better picture than me with fire coming out my nose when I was welding one day, oops. I don't know if you have researched my name as some have but this PH I have is not one that I can beat this time. My Wife and I are coming out your way next year to see the Grand kids, maybe we can connect and meet if you guys are up to it. We will be close to Baltimore. New Hampshire is not that far away and besides my wife has never been further than Denver. Me I drove truck and have been to all of them.

Yesterday was a bad day. The pressure in my chest was there for several hours. Still have the pressure but not as bad today. So I think I will just feed my Giant Flemish rabbits and take the day off. Good time for it anyway, it is raining here off and on. Maybe I can use that as an excuse, lol.

There is a trade small trade show I will be at today. Helping the kids to bait hooks and put the fish they catch in bag to take home and eat if they want. I even get to take my big Oxymachine so I won't be quite out of breath while helping the kids have fun. I would show you pictures but you can't put on them on here. Rained and was cold yesterday too and I got a bit chilled but managed. Kids need fun in their life when they are young so it helps good memories.

Just wanted to say hi. Been offline for couple of days. Been battling my own health issues and now my husband and I both have bronchitis. Never ends, does it? Lol!

Hope you're doing okay😊

Update news!!!!!!!! The kids that came to the show with their parents had so much fun trying to catch the fish. I laughed several times when the expressions on the kid's face was one of disbelief of catching a fish and then it comes off the hook. The kids also had fun when the fish went back in the water. Then we would just give them another pole with bait on it and they would try again. That time most of them brought it out of the water and I would bag them to take home. I had help Saturday with a young kid that never did fish before. I hope I taught him a lot about fishing and tying hooks and putting bait on them. I am sure I enjoyed his helping me and I know was very thankful for his help. He smiled and laughed a lot so I think he had fun doing it. I was suppose to go on stage and demonstrate some fly fishing techniques but they closed the show a couple hours early because of the Monster truck rally next door. There was a gentleman that showed techniques at 2 PM so those that were interested got a look at some at least. I was able to bring my big air concentration unit so I was never out of air. My thanks to all that allowed me to do something besides just sit at home.

You may also like...