Misconceptions About Pulmonary Hypertension

Misconceptions About Pulmonary Hypertension


When I was diagnosed with pulmonary hypertension, I learned that it was a rare disease. I had never heard of pulmonary hypertension before my diagnosis, and I learned that none of the people in my life knew about the disease either.

For those who might want, or need, to know, here’s some points to keep in mind:

1. Pulmonary Hypertension is Different from Asthma

A few of my friends tried to sympathize with me when I was diagnosed with pulmonary hypertension by saying, “I understand how you feel. I have asthma.”

I’ve had asthma attacks, to the point where I was hospitalized for a week. From my experience, asthma and pulmonary hypertension are very different diseases, even though they both cause breathing problems. 

I am not trying to downplay the severity of asthma. Asthma can be a very dangerous disease, but generally, it is a manageable disease.

People know what asthma is, there are far more medications to help treat it. There are more specialists and doctors available who understand and treat asthma. Although it can be life-threatening, asthma usually isn’t usually considered fatal. 

Growing up with asthma, I was never really afraid of what my future might hold health-wise. I was never afraid that my asthma might stop me from doing something. It never prevented me from being physically able do a routine task, have a career, move out, or have children. Unfortunately, pulmonary hypertension has done all of those things.

While asthma and pulmonary hypertension are both diseases that can make breathing difficult, it is important to remember that pulmonary hypertension is considered to be much more severe and life threatening.

2. My Lifestyle and Diet Didn’t Cause Pulmonary Hypertension

Most people know what regular hypertension is. Most people do not know what pulmonary hypertension is, and how it differs from regular hypertension.

I found that after diagnosis, many people thought that I had done something “wrong” to cause my pulmonary hypertension. 

Some thought that my diet must have been bad, others asked if I smoked. (I never smoked a day in my life and was a vegetarian who tried to eat mostly healthy foods when I was diagnosed.)

Sodium can certainly make the symptoms of pulmonary hypertension worse, but my diet didn’t cause pulmonary hypertension.

Bad karma from another lifetime did not cause my pulmonary hypertension, either. (I wish I was kidding, but multiple people have tried to blame bad karma from a past life on my diagnosis.)

3. Out of Sight, Out of Mind

I spent over the first year after being diagnosed with pulmonary hypertension on oxygen nearly 24/7. I remember several months after I was diagnosed, I finally went out to a coffee shop with my boyfriend. I was at a point where I could finally take my oxygen off for small spurts while sitting.

My boyfriend took a picture of me sitting without my oxygen and I shared it online. I shortly received nearly 50 messages from friends and family congratulating me on getting “better.” That was an awkward conversation to explain to people — especially 50 times. 

Not everyone with pulmonary hypertension requires supplementary oxygen, and sometimes people only need it for various activities like flying, sleeping, or walking.

The absence of oxygen doesn’t mean that someone’s pulmonary hypertension has gone away.

4. Just Because You Can’t See It, Doesn’t Mean It’s Not Real

Most people with pulmonary hypertension do not look sick. Even when I relied on oxygen 24/7 people looked at me with a puzzled face. I looked the same, minus that tank I was tethered to. If pulmonary hypertension is so serious, why do some of us look so good? (We’re cute, we can’t help it!)

Simply put, pulmonary hypertension is an invisible illness. Many people with pulmonary hypertension may look “fine,” but the symptoms of the disease and the side effects from the treatment can range in severity from patient to patient. Unfortunately, many people equate how good you look with how good you must feel.

Having to explain how serious pulmonary hypertension is just because it’s invisible can be very hurtful. Next time you see someone who looks “fine” using an accessible parking spot, don’t question their right to park there if they have the proper permit. Not everyone who is disabled requires a wheelchair. In fact, not everyone who is disabled requires medical equipment!

I might look like your average 28 year old, until you need me to bend down to pick something up or go up a flight of stairs.

What is the biggest misconception someone has said to you about pulmonary hypertension?

Note: Pulmonary Hypertension News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Hypertension News, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Pulmonary Hypertension. 

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  1. Lilly Martinez-Jimenez says:

    You ask; “What is the biggest misconception someone has said to you about pulmonary hypertension?”
    People (even family members) have commented,”If you were to “exercise more” you would feel/get better. I can’t even walk to the bathroom without getting short of breath and yet they urge me to go outside for walks around the block. Even with my oxygen tank at 5 liters I get short of breath when I am forced to do my 6 minute walk at my doctor’s office.

    • I’ve heard that a few times too. Thanks for sharing, that is a good point.

      Unfortunately, some people think some sunshine and exercise will help with anything without realizing that not everyone is physically able to do so.

    • Cindy Curtis says:

      Lilly, I get the same comments from family, including my husband. I know they are worried about me and want me to do everything possible to stick around as long as possible so I take it as a loving concern. If I didn’t I would probably be a very unpleasant person. I recently had to turn my O2 up to 6 liters at rest so there is no way I’m going to “walk around the block”. Keep up the phight!

  2. Maria says:

    Going to ER two weeks ago with crackling sounds on my lungs, the doctor on call refused to take an Xray that the concerned nurse wanted. He did not even look at me and told the nurse to send me home with two panadols and see my own doctor the next day. He said my PH was ‘under control’ and there’s no need to worry. It turned out that I have pneumonia and an enlarged heart with symptoms of heart failure. Was hospitalized the next day and put on IV antibiotics almost a week.

  3. DMH says:

    It’s difficult to put into words what it’s like to have this condition. I try to explain it to people but they simply can’t comprehend. When they see me going up in the elevator at church, not climbing the stairs they seem confused, never realizing that my lungs/heart are not like theirs.

    I too got sick at 25. I’m now 60. I only got a “real” diagnosis in the last three years finally acknowledging what was really going on. My denial of my illness came to an end. I’m sick and all that I can hope for is holding on until there is a medication that might reverse or halt the disease. Oh, and that I’m not killed by the uneducated doctors who seem to run most of the ER’s.

    • Going to the ER can be a pretty experience. It seems like no one is trained on what to do with a PH patient, and they aren’t exactly receptive when you try to start “doctoring” them on it.

    • aw wood says:

      In my 20’s as you described, I started having issues too…now 60, it appears the issue has been identified…Hoping my new medication regimen helps. I have felt like a prisoner in my home for the last 5 years and looking forward to re-engaging in activities again where I can go out in the community and be around people again.

  4. Cheryl L. Holloway says:

    Iam on adempas and 24/7 oxygen. Will be on adempas forever. Would like to know when I will be able to use oxygen only at home.

  5. Becky Sterling says:

    I too am on adempas and volibris and on 5 litres of oxygen.I had a old school friend say to me that she has gone out of her way to meet up with me, I agree I cancelled both times due to the fact that I was having a hard time getting up never mind getting ready.I was very hurt by this response and asked her why should I go out of my way to see her,I mean she is able and I am not so again why should I put such stress on my heart and lungs and health to visit someone so selfish.

  6. Craig R. says:

    I was found to have ”PAH” from chest scan, echo. The Cardiologist is quite responsive to my communications. She feels I’ll be able to do things yet while starting treatment to listen to your body. Exercise yet take it at a certain pace you can handle even if its just a minute or two. I’m slowly coming around as my case was considered very mild. Regardless that doesn’t mean I should disregard it. At times it feels like living at 12,000 feet altitude at sea level would be my way of putting it. Frustration will be the initial feeling yet it will take a little time, be patient, listen to your body. Your health is everything, treat it with care. Just avoid smoking, excess drinking alcohol especially taking a Lasix or hydrochloride to release bodily water from edema. I cut out my smoking after 25 years it was necessary not to mention expensive. I’m a 51 year old male.

    • Janet Forsyth says:

      I am a sixty one year old woman that moved at 100 miles an hour constantly throughout my whole life and that suddenly all came to a stop when I became SOB with even the easiest task. They did a heart cath and the pressure was 25 which is the lowest a pressure can be for a Dx of PH. My echo showed mild heart enlargement. I now need O2 at 3L constantly. My doctor says I have PH but I’m not sure. And I in denial? Anyone else have a low Right Heart cath pressure but still have PH? I’m scared!!

  7. Iris Nannen says:

    I am not diagnosed, I have lupus and fibromyalgea and a blood disorder. After I had my first child I noticed a change. Doctors said it was post partum. Eventually by my second child i was diagnosed with lupus and fibro. Eight years later I was diagnosed with a blood disorder and my obgyn said i shouldnt be having children, so I had two more. Through all the diagnosis I felt the shortness of breath, dizziness and fatigue with exertsion. I thought it was all from my autoimmune. Why is it so hard to breath I thought? I often wondered if I had asthma. Feeling like I was at high altitudes and having panic attacks and feeling clostraphobic at times, I kept it in thinking its just that I dont feel good thats why I feel panicky and have to take such deep breaths. I see my rheumatologist on Friday I hope he doesn’t give me that look that other doctors have given me before and thinks Im crazy. This website has given me new hope and insight. Ugh! Here we go again!

  8. Cheryl Holloway says:

    I live with PH. My doctor prescribed the drug Adempas. After a year of the drug I went to the University of California San Diego and had surgery removing 18 blood clots. I still take Adempas along with Coumadin, and oxygen now 1/4 of the time.

  9. Paul E Carpenter says:

    At times PH almost sounds like an allergy based form of asthma. Allergic swelling constrict airflow and limits intake. Or maybe directly interferes with the absorption of of oxygen into the blood stream. Has anyone that has ever been diagnosed with this ever experienced relief from taking an antihistamine like benodryl?

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