Living with Pulmonary hypertension/ I am new to this site

I am 64 this year and found out last year I had Pulmonary hypertension. I have always been an active person and I think that is the reason for me to live longer than the Doctor thinks I will. My parents told me I had Polio and Cerebral Palsy before I was 8 years old. The doctors told my parents that I would never walk right and I proved them wrong. 2 years in leg braces and a lot of work and I got rid of the braces.

My Wife bless her heart, says I am Frankenstein put together backwards. They say your heart is suppose to be on the left side and if not there is word for it but it evades me for now. I was informed that it was suppose to be a all or nothing kind of thing. I guess that is were the frankenstein come into play. Because of the Cerebral Palsy half of my body grew at a different rate which gave me Scoliosis, (curvature of the spine). As I grew my ribs was pushing my heart to the other side of my body and if I did not had the Harrington rod surgery my ribs would have punctured my heart. The surgery went better than the doctor thought it would. I could do everything except bend backwards. Also it did pinch a nerve so when I am writing at times my hand will jerk the full length of the paper.

Now days I just take one day at a time because I never know if I will be alive the next day. From the research I have done I will die in my sleep or have a stroke and die. I am hoping for the first one. You see I have 2 grand kids I want to see before I die and they are on the other side of States. Also I am working on a 68 Mustang that I am giving away to a Vet. There is no cure for Pulmonary hypertension and I can think of NO other person more deserving than someone that served in the Air Force. I am giving my gold mining supplies to a kid in Canada I met last year, Carson is his name. Anyway I am finding people that can put my stuff to good work or deserve it.

23 Replies

Hi vj77 welcome you sound am amazing human being hope to get to know you better I'm sure the others will be along shortly to say hi best wishes x

welcome to the forum - I am sure lots of people will pop on hereto say "hi"

Hi and welcome, make yourself at home :)

Good evening Viarry, what an amazing story. You have much to offer us, in terms of your resilience and tough-mindedness. We all want some! PH is nasty, and I am sorry you have developed it. You must have several consultants with the mixture of conditions you have. I hope they talk to each other and work together. If you are in the UK then presumably you are attending one of the pulmonary vascular disease units? There is a PH Association which seems to be very informative. Not that I want you to switch your allegiance to them, we want you here, on this site. We need you!

All the best

K xx

Actually I started one called Living With PH. Please don't be sorry and I don't mean to sound like a bad person saying that. Sorry to say I am not in UK. My sister went there one year and told me it was nice out there. Sad to say most people do not do their homework on PH. If they did then they would know you don't get better because there is no cure for PH. However, there is a cure PAH, which is the stages before PH.

Sorry Kat I only have 1 Doctor. He doesn't mince words with me. We will sit in front of CT scans for hours and he will explain this and that if need be. I did my home work also and learned how to read them, unknown to him lol. But the best thing is. He is also a friend.

That sounds good. The most important thing is to feel confident that you are being looked after well.

K x

Hi and welcome to the site. Been reading about PH and it does sound serious, but you have such a positive attitude that you might have years yet. I wouldn't give away anything too soon as you might need it!

On looking on the NHS site I saw this statement:

'However, the outlook for pulmonary hypertension has improved with the introduction of new medicines over the last 20 years and people are now able to live longer'.

There are some on here who are at the last stage of copd/other lung diseases who have well outlived the odds and have no plans to go anywhere for a long time yet. Stay with us here and we will help and support you all we can. x

Thank all of you but my condition is sever and we didn't catch it in time. Guess that is because I am stubborn.

Hello vlarry and welcome to the forum. You have certainly been quite the survivor with all the things thrown at you...fight on!

I hope you get to see those grandchildren soon and we would love to see the photos.

Good luck with finishing the Mustang...nice car!

All the best

Tee x

Well the fight is over now. What ever comes comes and no stopping it. But I will always put off as much as I can until then. I have come to terms with what I have so I no longer worry. The Mustang work has come to a stop until I get extra cash for parts. Guess I should paint it first. How about the old Candy Apple Red with metal flake? I like to stay with the color of that time period besides being a cool color, lol. As I have been reading I find a lot of you are getting better. That makes me very happy to hear. I am glad to find out most don't have PH.

Hello. You have been through so much and been very brave. Welcome to this forum. It is truly a great place for us to get support and advice and sometimes just to simply talk.

Best wishes,

Cas xx 🎈

Hi vlarryj77, welcome to our forum. We all try to be helpful if we can. It will be nice to get to know you. God bless. Maggie x

Just wanted to say hi and welcome Vlarry, you are in the right place for help, advise, sympathy and of coarse humour! Look forward to hearing more from you, any questions just fire away always someone around. Take care Xx

Hello and welcome from me too, viarry. Take care of yourself, Sue x

Hello and welcome. I also have pulmonary hypertension and systemic sclerosis diagnosed in December. You are a very brave person with everything you've experienced. We have to keep fighting against this terrible condition. There's lots of support and advice on this great forum.

As I told JayneO you should get another opinion also. There is no cure for this except OXYGEN 24/7. I am going to do research on systemic sclerosis and will get back with you both.


I also have Pulmonary Hypertension and systemic sclerosis, my PH has been reduced from severe to mild in four months by drugs, and I'm glad to say I'm feeling much better. Hang on in there, if you get the right treatment there is hope!! And you certainly seem to have the right attitude! Take care.

Sorry but there is nothing they can do about old age. That is basically what my condition is. My lungs are 2 different sizes. The left side is a normal size lung and the right side which distributes the oxygen into the blood steam is about 1/3rd smaller. So as I was growing the right side has had to work harder to keep up. This is where old age comes into play. There is no medicine or fountain of youth to fix me. I thank you all for the support and I don't wish the life I have had to live on anyone. I take that back maybe a couple guys, lol. I am not in any pain from this issue. I do have pain 24/7 but that is from a car accident back in Dec. 1999. It has put me out of job market because of the pain meds I take. I get a shooting pain down in my right leg in the bone if I don't stay on them, like being kicked in the shin. This is the Sciatica nerve being pinched. If I was you I would get another opinion on your condition.With my oxygen set on 4.5 and just sitting here my 02 levels are around 94. As soon as I disconnect just to use the bathroom I drop down to 75 by the time I get back to the couch. When you stop and think about it, it is quite a drop for a few minutes. Doctors will place a name on stuff that they can't figure out what it really is. So do yourself a favor and get another opinion from a good specialist. I hate to see anyone that is getting the wrong stuff for something the doctor is trying to look good about diagnosis.

Hello and welcome. You seem to have a great determination. Good for you. I am curious though as to why you believe people with pulmonary hypertension usually die in their sleep?

Stop and think of how a person like myself gets oxygen. Either trough a tube that goes in your nose. Or a mask which covers the mouth and nose or just one or the other. You have probably read most of everything I have posted so you know how bad I am. Anyway the last 2 nights I have pushed off the hose but it never did wake me up. Just out of curiosity I did a O2 test and it was down to 73. I guess I could hook my computer up to the Oxiymeter and let it record all night. It is only a matter of time and some part will give out inside me and I will die. Every time the O2 reading gets below 90 it is hard on some part of the body. It has been a year now on this oxygen supplement and I can feel the difference it has had on my body. I was out painting the house today and then tried to put some roof sheets on. I felt to weak to put the sheets on and climb the ladder also after painting. So tomorrow is another day and I will start more roofing in the morning when I am rested. I am at the point now that my eyes when I get tired from lack of oxygen see only a bright light with a bit of fuzziness around the edges. Today is the first time I even felt a little faint. So I actually come close to having a stoke. So I guess it is time to slow down a bit more. If I could afford to pay a kid around town to do this work I really would. But with only $1000 a month with $200 in food stamps I just can't afford it. So I do what I have to just to make the homeowners insurance happy.

Sorry didn't realize that it took stuff off facebook also but that is fine. The only other way to die is with a heart attack. You can control that part of your life if you stop and think about it. If you are doing better as you say, and I truly hope you are, then you didn't have PH. You had PAH or some other thing. I bought a new lawn mower that is self propelled and will go at my speed 2 years ago. I was able to mow the lawn that is 20 X 30' with my air hose on and not take a break, very small yard. I just mowed it last weekend with my air on and I ended up having to stop 3 times because it was getting to hard for me to move. I am not getting better and I didn't expect to either. However, I really didn't think it would get this worse quite as fast either. I have cheated death many times. I have had Polio. I have had Cerebral Palsy both and the Doctors told my parents I would never walk properly. After 2 years of leg braces and hard work learning to walk I was able to get rid of the braces. I am not one to sit and let it get me down. Looks like I don't win this one though. But I will hang in there long enough to see my grand kids at least once before I pass on. Have only seen Zach through pictures because they live on the east coast and me on the west. I can't fly because of the pressure in altitude but we are going to try and drive out next year if everything comes together.

You are a trooper and an inspiration ---Sending good vibes your way MmeT

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