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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 shoes or pick anything of any weight up I feel like I am going to… read more

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 almost 3 years 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 over 2 years ago
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 almost 3 years ago
A myPHteam Member said:

Your Pulmonologist will usually have you do a PULMONARY function test, which includes the 6 Minute Walk Test. They also can order a nigh-time Pulse Oximetry test. This can be done at home with the recording Oximetary attached to your finger and wrist.

posted about 2 years ago
A myPHteam Member said:

Hi, what does it take to have your Doctor prescribe Oxygen is the question. It use to be easy to get Oxygen but the Government has recently changed the rules! Now you must do a Oxygen Stress Test that consists of you walking, pushing your own wheelchair or however you get around from point A to point B while the Nurse measures your Oxygen Saturation levels. They must drop below 90% or lower to show you need the Oxygen before you can get any. Even then sometimes you still don't qualify! Depends on how and what your Diagnosis is and why it is prescribed. Example: with CPap at night or continuously or prn. I hope this helps you.

posted over 2 years ago
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