Dale PaceParticipantMarch 4, 2019 at 6:35 pmPost count: 1
I wanted to introduce myself. My name is Dale and I was diagnosed with Pulmonary Veno Occulsive Disease about 2 years ago. I go to the clinic at Vanderbilt. I am on full time oxygen and attending pulmonary rehab currently. I have a wife named Anita and a son named Brian.
DanaParticipantMarch 19, 2019 at 6:44 pmPost count: 1
My name is Dana and I had a heart cath. left and right last October which gave me the diagnoses. March 4th I was diagnosed with needing oxygen when I exert myself. I currently am having to be my own advocate and stay on my doctors to move the process along. I have not been to the Vanderbilt specialist yet but my pulmonologist is working on my referral (it’s been 6 weeks and just called again today). I’ve been left in the dark and am looking for any and all help/advise I can fine related to my prognosis and diagnosis.
I am currently working a full-time job and have an ailing mother (Phyllis) who lives with me. I am divorced and am an only child.
AvaParticipantMarch 24, 2019 at 11:29 pmPost count: 34
You definitely need to see a PH Specialist. The first thing they should do is determine what caused your PH (eg. left heart problems, lung condition, auto-immune disorder etc). After my diagnosis (Idiopathic PAH) I learnt not all PH is the same! The cause of your PH will determine the treatment. It’s VERY important, as the wrong treatment can actually make you sicker! There seems to be a trend of certain doctors diagnosing PH as Idiopathic (even when there are known left heart or lung problems) because Idiopathic PH can be treated with meds. BUT the meds will make you sicker if your PH is caused by certain other problems (ie. left heart or lung conditions). (I think some doctors/people are just accustomed to fixing everything with a pill, and so prescribe it even when they shouldn’t).
Fluid retention tends to be a problem for people with PH – and will quite often make your breathing/SOB worse. (As an example, I had several doctors diagnose me with asthma until my PH Specialist said it was fluid – I got rid of the fluid and suddenly, no more ‘asthma’!) I take between 1 and 5 diuretic tablets daily to help keep mine under control, and am on permanent fluid restrictions (1.5 litres/day). I am also on a salt-free diet (so no processed foods).
I find fatigue to be a major factor for me, and so have structured my life differently. For example, I now have my main meal in the middle of the day, because I am too tired to cook by late afternoon. I also cook extras and freeze for those days when I am really bad.
Good luck with your appointment. I hope some of this information has been of help!
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