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My Pulmomologist Said I Have PH And Has Not Given Me Anything To Help With Symptoms.

My Pulmomologist Said I Have PH And Has Not Given Me Anything To Help With Symptoms.

I feel very fatigued, Dizzy and short of breath most/All days. Especially after trying to do something for an hour or so the day before. I have been like this for 2.5-3 years. My pulmonologist is not treating me for it just making me do more tests with cardiologist. I live in Oklahoma and the Humidity is making it worse. I can't work.
It starts when I wake up (I am on CPAP) and gets worse when I shower. If I bend over to tie my… read more

A myPHteam Member said:

There is a type of pulmonary hypertension caused by PE"s, called CTEPH ( chronic thromboembolic pulmonary hypertension). You need a cardiologist or pulmonologist who specializes in pulmonary hypertension to determine if this is what you have. Please check the Pulmonary Hypertension Association web site. They have a list of facilities and doctors who are knowledgeable about this disease. If you have a form of PH, you will not feel better until you are properly diagnosed (including a right heart catheterization) and treated for the particular type of PH that you have. Best of luck to you.

posted 11 months ago
A myPHteam Member said:

That was my symptoms exactly I had them 2 years before I started having a few chest pains. Went to heart Dr & he ran tests plus the BNP test & it was high. Long story short he sent me to a pulmonologist & was started on Letairis 5 Mg. Also my rheumatologist put me on mycophenolate because I was diagnosed with scleroderma in the arteries to the lungs causing pulmonary hypertension. Short of breath, dizziness extremely tired & at times seem to be ok & the next minute I could not walk across the kitchen floor. The Letairis started working almost immediately which was a surprise. There is a generic for Letairis but for some reason it did not work & had taken generics for years. Was put back on Letairis & can breathe so much better. I also lived in Ok for 32 yrs by the lake & the humidity is awful as I live just across the line in Missouri. Just a suggestion, maybe a new pulmonologist. Good luck & take care.

posted 6 months ago
A myPHteam Member said:

My Oh My, A long list to address. Sit down to do anything below your waist. When you bend over .... you are basically pushing the air out of your lungs. for the time it takes to tie your shoes. Buy velcro fastening shoes. It takes only a few seconds to put on both shoes. Does your C-PAP machine have a water chamber so you are breathing humidified water while you are on it? Is the mask? Nasal cannula? a tight fit enough not to allow any air to escape around the nose or mouth? You are tired when you wake up because you are NOT getting what they call REM sleep. I must use a shower bench for baths and can not walk more than 15 foot without stopping to rest,. that is an improvement! YEAH! If you get short of Breath practice, "Pursed Lip Breathing," that will get rid of the SOB. We ALL get Dizzy! Walk me a nice looking Gentleman in front of me and I will get Dizzy Myself and I am 71 years Young!. As for Oxygen tanks, they are heavy to carry around. I use to carry them in my car in case I needed them. What are they going to give you after that? Have you thought further than that? They can go up on the liter flow to you but that is all. A long time ago, I was ask by a Physician to go by and check on one of his Patients in a ALF. She was 112 years old and refused to take her vitamins he prescribed. I only worked the weekend and covered over 300 miles a day but went by and to my delight watched this little Lady come across this large room hugging and kissing her way to the table where I was waiting. The first words out of her mouth was, "tell him, I will not take those Damn Vitamins he wants me to take". I had to laugh. As we talked. I got her vitals and they were all within her normal range. I couldn't help but ask her, How did she got so much energy and Happiness Just Shining out of her eyes.. She leaned back in her chair and looked at me for a few seconds then told me what I share with YOU now, >> I get up every morning and LOOK into my mirror and SEE a BEAUTIFUL INTELLIGENT WOMAN THAT NO ONE CAN STOP HER FROM WHAT SHE WANTS TO DO! THEN I GO ENJOY MY DAY! In Your case, I am Praying it will be a Handsome Gentleman that will be looking back at You. OKAY? Life is too short for you to be worrying so much! Focus on something else you will enjoy.

posted 10 months ago
A myPHteam Member said:

I live in Oklahoma as well. You are so right. This humidity is so bad. Can’t go outside unless it’s a necessity. Do you do breathing treatments? That and CPAP should help get rid of the fluid.

posted 11 months ago
A myPHteam Member said:

I was diagnosed with PH back in March 2018. And I too live in Oklahoma! And your right the humidity is horrible. I was prescribed O2 with my initial visit to a pulmonologist in March 2018, but insurance or lack of, changed that for me too. I received breathing treatments when in the hospital back in February. They were terrific. I recently got medication so i can do breathing treatments. I continue to see a cardiologist, who recommended the pulmonary rehab. I too need to get that started. What is frustrating for me is they are not treating my PH because they do not know what is causing it. I do not see a pulmonologist due to my lack of insurance. I am currently trying to get disability so i can get medicare.

posted 11 months ago
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