Pulmonary Hypertension Support Group

Hi there Goldi!
Yeah - I still keep my eye on any posts on here and I do reply if I feel that I have anything to offer but you know you can always take a look at my journal! I managed to put some photos on recently for my friends to look at so take a peek!
Good to know that you're beginning to feel a bit better on viagra. It has helped me a lot and I'm due for a 6 month check-up in a couple of weeks so I'll let you know how it goes. I'm back at work now so I don't spend as much time on here as I used to. Sometimes I think that's a good thing so that I don't dwell so much on the fact that I've got PH - Anyway you take care and don't forget that I am still here - S x

Hi Sandie
Glad to hear you are feeling better. I also keep an eye out on any posts in here, but there doesnt seem to be too many. It is good you are back to work. It must make you feel more normal. I am still taking the viagra.... about two months now and go for a check up next month. We will see how that goes.. Let me know how your checkup goes and I will let you know mine. I will read your journal too.. thanks.. Joanne :)

I don't respond as often as I use too. My strength is such that I just don't feel well. When I do feel o.k. I try to accomplish what I can as far as housework. My computer is a desk computer and I just get weary trying to respond to it all. But I do enjoy reading the posts. I am still taking viagra and I also take letarius. I have PAH which is the pressure from the lung to the heart is excessive and my heart takes a lot of stress and makes it hard to breathe. It is good to hear that you are out of the hospital and doing better. I still pray for you. Love and Prayers, Berta

I am sorry Berta, that you arent feeling so well. I have been having a hard time breathing the past week, but I dont know why. I had a fever and aches and I am coughing coughing coughing. I thought it was a bug of some kind, but the fever is just about gone and so are the aches, but the hard breathing is still there. I dont have any feet or ankle swelling, so I cant figure it out. I dont take that Lectar that you take. Does it help more than just the viagra alone? This disease sure sucks

Hi girls!

I have been very interested in the posts, but have not written one because I don't know what to ask. I was diagnosed with PH/COPD October 2008. I went in to see the reg doc because I couldn't breath. They wanted to put me in the hospital because my pulseOx was 78. I talked them out of it and promised to see the cartiologist the next day. He did an Echo and told me my black lungs were covering my heart and they couldn't see much and he wants to do a heart cath. My husband and I don't have insurance and we just can't afford it. My husband lost his job 2 weeks after my diagnosis. He was lucky to find a new job last month that will offer insurance after September. So here we sit! I have been able to work a deal with my Pulmonologist and we have been working with the COPD problem.

Nothing has been done for my PH except that I gave up coffee and went to decaf. All I know is that when I can't breath, my heart pounds like crazy and my back (between the shoulder blades) really hurts. Pulmo. Dr. says it because of my lungs and it's not a heart attack. I stick a pillow between my shoulder blades and try to rest (yeah, right).

I have been learning a lot from your posts and google searches but PH is complicated to the layperson, like me.

Comments, suggestions until I can get the heart cath and a better diagnosis and pressure numbers, and maybe meds??
Thanks.

Pulmonary Hypertension as I understand it is the pressure from the lung to the heart and it causes the heart to work harder. I am on oxygen 24/7 and really find it helps. I am tired and weary and ache and thankful I don't have a lot of pain but I do have fibromyalgia. Hang in there and I am praying for you. Love and Prayers, Berta

yes, berta is right. I also am on oxygen 24/7. I just hate it, but I know it helps. I wouldnt be able to breathe without it. You have to watch for swelling in your feet and ankles. That usually means you have fluid around the heart and need to take meds like lasix to get it off. I am also on Viagra, which is just new. It is suppose to open up the pulmonary arteries and help you breathe better. i have had many heart caths, both right and left. It isnt bad. A normal pressure is about 25, Mine is 71. Hopefully with medication I can get it down more, even though this is a progressive disease. Good Luck!

Hey Goldi!
I am glad to know that ou are feelilng much better. I know how thoese swollen limbs can be. I have too been in the hospital for nt quite as long as you be I was put on IV lasix as well I even had it at home were I gave it to my self and then was put in the hospital for low pottassium. I have been living with PPH for 4 to 5 years now I was so sick when they found out what was wrong with me I went on Flolan and viagra right away. I then lost 100 pounds then when I got sick in Jan of this year I gain a lot of weight because I went into CHF where I was swelling up in the belly I had to get my belly tapped twice. This year has not been a real good one for me as far as health wise. I am doing much better now so I guess I will keep my fingers crossed. I was told that the only thing that will help me now is the Trasnplant so now I am in the testing stages to see if I even a canidate for new lungs. You have to go thru so much for this to be a 50/50 chance of getting one or not.
I am sorry for dropping all this on you when I really just want to say I am glad that you are doing much better please forgive me I haven't had anyone that might have a clue as to what this feels like to talk to I hope you understand......

Hi all
Thanks for the info. I am on oxygen 24/7 but didn't think to mention it because I thought it was COPD-releated and not PH --duh. I guess oxygen does bring down my heart rate when my pulseOx goes up. See what I mean? All these little gems of information and all you have to do is ASK!

I don't have any portable oxygen because I don't have insurance, so when I leave the house for anything, I make it quickI I absolutely hate being house-bound and it is very trying on my marriage. No trouble with swelling of feet and ankles, but I will watch for it. I will keep checking this room for more goodies.
Thanks again, hugs, Laurie

I know that oxygen has been a great source in helping me with my breathing. I am also taking viagra and letaris. I was wondering why so many have trouble with swelling and now I understand that mean you have fluid. I lost weight when I began all this and now I am gaining the weight back and I know it is harder to breath. I will be going to my pulmonary doctor in the next couple of weeks. I always dread going because they always seem to find something else wrong. Ha It could be just old age for me. Seriously I am learning more from the site than I thought would ever be possible. Prayers to all. Love and Prayers, Berta