I've been blessed with some improvements in my health but still find myself fatigued quite often especially at times when I want to be more active. I know the COPD and accompanying PH won't go away. I know they will probably get worse. I'm slower than I was, more SOB than I was, but I'm still trying to function without slowing my family and friends down. It is at those times when I feel "left behing" and isolated. Thoughts please. Peace and better breathing everyone!
I think the rehab is probably what helped me the most. When the cardio/pulmonary rehab ended I started therapy for my spinal stenosis and arthritis. There I've been working with a Physical therapist who though he wasn't directly treating the PH did understand my lack of exercise tolerance and worked patiently to help me become more mobile with less breathlessness. His care has been incredible and I only wish my other practitioners had the same. I agree completely that in my case I've hopefully slowed down the disease progression at least for a while. Learning to be patient with myself is something I must work on. Peace and better breathing with much happiness for the holidays.
Carol you are never on you're own the team is here to help you
I don't manage "occassions" very well these days. I play out and need several days to recover.
I just completed four months of rehab. I walk every day even though it is much slower pace these days. I just had a right and left heart cauterization and my heart is operating 30 % better and my pressure is a little lower than it was 2 years ago when I had a heart cath and was diagnosed. I know PH can't be cured but we can do everything in our power to try to stop the progression. Sending hugs to all and hope the holidays bring peace and joy.
I do sometimes but having a boyfriend who stands by my side and a 6yr old nephew that also supports me makes things easier. When it comes to sob Letaris(spelling) helps me a lot and since on that my sob is not as often. Adding subq remodulin with the Leteris has really improved my sob.