Still working on treatment
They have decided that I don't have a lung disease - probably - I do have UARS however - and that I need more investigations. Unlikely to need a CPAP but a different oxygen mask may be needed.
Has anyone had these tests done? And what outcomes from them?
Looking for others working with these.
I am fighting not to give in to these ugly illnesses!
I live with CREST Syndrome, Iritis, Pulmonary Hypertension and now A Fib which is a racing heartbeat problem. I got Covid a year ago and spent 6 days in the hospital and because of the Covid I have the A Fib problem. We thought we had gotten my heart beat back to it’s normal rhythm but a couple days ago my feet and legs started swelling really bad. My whole body is swollen and I can barely walk. I started taking water pills and the swelling has gone down but I am still having problems walking and I feel terrible. Went to my doctor who sent me to the ER because the A Fib is back and if I am understanding the condition right resulted in the swelling of my body. I also gained about 10 pounds which is the result of the swelling that is going on. I am so tired of not feeling good. I have lived with the above auto immune disorders for 22 years and have been able to live a pretty good daily life but here lately I have been getting worse. Getting Covid did not help because of the lingering effects of the virus. BUT I will keep on fighting these ugly diseases, I just have to remember to be positive and that GOD is there for me‼️
New to The Mighty
Just wanted to introduce myself. I'm Deb, I'm 52, a wife, and have two adult children. I've been battling illnesses for a decade now, so many physical problems that I'm now disabled and stuck in the house for most of the time. I'm also learning how to give up doing the normal things I used to do, although most of the time, it's not pretty. I am mortified and embarrassed to list my issues... but, I feel I need to as I did come here to learn and be a part of a group that understands. So.. here goes.. my list of issues are fibromyalgia (10 years officially diagnosed, 17 years with it), heart disease (including an emergency triple bypass when I was 44), pending pulmonary hypertension diag, asthma, copd, liver disease, kidney disease, stage 3a, hypothyroidism, feet neuropathy, low grade chronic depression, anxiety, and I'm sure I'm missing one or two more. The fibromyalgia really kicks my ass though.
Right now, I'm in the middle of fighting myself to get up in the morning, and finding something to do besides not getting up and sleeping as much as possible. I know, from reading and my doctors, that activity is supposed to help with this, but to date, I think they have no clue. I am extremely thankful for the medication Trintellix, as it's made it so I don't need 3 entire hours to be able to get up off the bed in the mornings. (Speaking of meds, I'm on a ton) My main doc doesn't believe in giving me hardly anything for pain meds, which, sure would help me start walking on a treadmill.
Sorry, I meant to type up a quick "hello" and introduce myself, and I've started a tiny book.
Anywhooo, I'm glad to be here!
How I Help My Patients Navigate Their PAH Journey