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Looking for some answers and to share my story.
Hi guys I’m Shawn I’m 31 and was diagnosed with pulmonary arterial hypertension a little over a year ago. I had open heart surgery at 3 years old and the doctors estimate this is the cause.
Before I was diagnosed I smoked quite heavily and drank sometimes twice a week, I guess you could say I was quite the party animal. I’ve slowed it down since but still haven’t kicked smoking fully unfortunately I’m off and on at times I drink less but still do.
I’m not very active besides my job I’m A plumber and it’s fairly demanding at times.
most nights I’m playing video games or watching movies with my girlfriend to relax so not all that active. Before my diagnosis I was getting very
bad, 4 flights of stairs and I basically needed to stop.
heart was pounding,legs were heavy out of breath, etc.
I was put on adcirca and volibris. I guess I went through a total denial period where I believed this could be beat, I didn’t want to believe I would never be the same again.
I tried diets like the carnivore diet which was amazing but incredibly boring ???? . I also tried all sorts of weird naturopathy stuff from herbs to meditation etc etc fast forward to now and I couldn’t be more grateful. This week I’ve been doing breathing exercises while I work out or do cardio and it’s like nothing I’ve experienced my exercise capacity is through the roof at least from worst point to now and it’s seems like it has to do with these exercises as the noticeable increase just started around this time while I’ll admit it could potentially be the meds. I guess that brings me to my first question do you guys think that there is a plateau with medication? If so when around? Did you keep getting better over the years? Secondly I guess I’m wondering if anyone else is in a similar situation as me physically. I feel like I could walk ten flights of stairs now with minimal difficulty, I can jog for around 5 minutes without stopping? I never really seem to tire at work and push myself to the limits to try. Walking up hills used to suck and I mean small hills now I’m walking my fastest up them and not feeling it. -
3 Replies
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@shawn898 firs of all, I am also around your age (I am 28 years old) . I was diagnosed with mild PH with exercise and activity. Even though the activity that I was doing was very minimal when they tested me. They couldn’t really get a full understanding of the reading since when I had my heart cath they did the cath laying down with me just pedaling my feet while laying down. They were guessing that with standing and exercising my pressures would have been higher. The problem with me was that when I was exercising my oxygen levels would start to drop really quickly. They go from 99 at rest to 83 with just 1 minute of walking. This is why I got put on oxygen. I also was born with a heart condition and had 2 open heart surgeries, a bypass surgery and a pacemaker placed. A lot of this is chalked up to how my body and circulation has been in my life because of my heart defect.
Like you, in the beginning I could barely walk around without getting short of breath. I would hope that the medication that they have you on is giving you good relief and that it is starting to improve your exercise capacity. I know that is what the doctors hope for with us is to see some type of quantified improvement with exercise, breathing tests, oxygen levels, blood values, etc.
Have you ever had your oxygen tested with activity? Just curious if this is something that could have improved given the medications that you are/were taking. It would be interesting to see. Also, were you given a pulmonary function test before when your symptoms were worse to now?
Thank you for sharing your story with us! I hope you know you can respond and post here any time.
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Hi Shawn, Well you are definitely one of the lucky ones by the sound of the way you have improved since your original diagnosis. However, PH is a chronic condition that you can’t beat, but you can improve with the help of medication and exercise. This is probably what’s happened to you, but from now on it’s up to you to get rid of the smoking for good, keep up the exercise and keep junk food to the minimum – I know, we all love those fatty yummy snacks. I began taking bosentan (Tracleer) after my diagnosis 7 years ago of severe PH and heart failure (scary!) and the almost immediate improvement was unbelievable. But, after about 2 months my liver cried out “enough!”, so I then went on to ambrisentan (Volibris – first 5mg now 10mg for the last few years). I also have a pacemaker due to irregular hearbeat. I attend a PH Clinic at my local hospital every 6 months where they put me through a heart echo, 6 minute walk test and respiratory function tests. I have to do this to get approval for my next 6-months worth of medication from the (Australian) government body regulating the distribution of costly medication, on our PBS system (A$6.50 per month). For me, I feel like my condition has plateaued but I consider I am in quite good health compared to some of my friends and family – I am 78 years old and quite active – always have been. They say the faster you walk the longer you live – I’m banking on it ! LOL
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Hi Brittany – Not sure with our time difference whether you have had your ‘procedure’yet – either way – big hugs – hope your breathing is good. Your Grandma sounds like a wonderful woman, but we can only be as good as our health allows and you sure seem to be a positive woman. Peace and love – Aunt Lizzie
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