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A myPHteam Member asked a question 💭
28777

What was your symptoms
Mine seemed to have started years prior to getting anything showed up on any tests. I had been told i had fibromyalgia and they would send me home. I didn't think i ever did. Then they said chrons because my stomach would swell up, the legs and feet would swell up they told me i work too much, even though I had been at the same job 2.5 years without that issues, severe nausea, dizziness and fainting, extreme exhaustion, chest pain/tightness, blue colored chest on skin,… read more

June 9, 2023
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A myPHteam Member

I was diagnosed 3 years ago and was finally started to a so very strong. I had to stop and start slowly. It wasn't working!!!! I was crushed I am on ox 24\7 that really sucks have a portable for going out. To me I am scared one day and not the next very depressed. I actually hate going out. Like I don't belong

June 15, 2023
A myPHteam Member

I'm not in meds either yet but we are waiting for medical to be approved and I've done paperwork for charity hoping they will help..i can't really do much right now I'm so tired, I've never got a bad CT scan until recently even though I've had these symptoms building up the only thing they saw was tachycardia for the longest time.. Right now they just have be taking a vitamin with beet extract and coq10. And low salt diet and 4 water bottles a day size of liquids. It's been hard to diet and stop eating what i was! But it'll be okay. I'm do anything i can do survive! I have chest pain almost every day so i don't know when it's a emergency or not anymore!!! I can't believe they make you wait so long! It can be stressful to get a diagnosis i kept on insisting and emailing doctors. Lol..

June 10, 2023
A myPHteam Member

I knew something was wrong with me for the last year. PAH did show up on Ct scan done over a year ago. Nobody did anything about it, Finally had heart catherization two months ago and diagnosis was confirmed.I am fortunate that I can still function, exercise and do 10,000 steps aday. Sometimes the chest pressure is overwhelming and I have to stop walking and just stop until it goes away. Good days and not so good days. Learning to pace myself on those not so good days. So far, not on any meds. Will be seeing pulmonologist at end of month. Hope you are doing well. Any info you can pass on would be greatly appreciated.

June 10, 2023
A myPHteam Member

I just applied for disability and they have sent the application, just waiting now. Not sure how long that takes.

July 11, 2023
A myPHteam Member

I am on disability now you may want to look into this if you have enough work credits I also have a husband who works as well though so that helped with the financial burden while waiting for benefits I am on oxygen now 24/7 too

June 24, 2023

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