Researching Pulmonary Hypertension

GOOGLE is your best friend isn’t it?

There is so much information on the internet these days.  Google, it can be your friend and it can be your worst enemy all in one sitting when you are searching for something regarding your health.  It can really make a person become paranoid, frantic and down right hysterical in less than 5 minutes if you let it.

So let’s talk researching your disease. Mine just so happens to be Pulmonary Arterial Hypertension.  When you google it you will get this box:  Don't Click the boxes unless you want to be confused in less than 3.2 seconds. Its overwhelming at the least.   

People also ask

What are the causes of pulmonary arterial hypertension?

What is the life expectancy of a person with pulmonary hypertension?

What is the difference between pulmonary hypertension and pulmonary arterial hypertension?

What happens with pulmonary hypertension?

You will get so many different websites that you can click to see what PH is all about. Hell, to do this research project, I clicked on 6 different links...Here is a good one, are you ready? Did you know that people with untreated PAH have survival rates of:

68 percent at one year
48 percent at three years
34 percent at five years
Within a few years of developing the condition, everyday tasks, such as walking and showering, will be more difficult and eventually impossible.

All of the above information was read on this website: https://www.healthline.com/health/pulmonary-hypertension/pulmonary-arterial-hypertension-prognosis

Moving forward on that analysis, the percentage rate that is being referred to here is actually from a study that they got entirely wrong, because, once again the Internet is not our friend when it comes to research and accurate information.   In the early 2000's a study was done as part of the Reveal Registry.  A group of 3,515 patients were in this study and 54 study locations State wide. The study showed the overall percentage rate was as follows:   one year survival was 85%, three year survival was 68%, five year survival was 57% and seven year survival was 49%. The study was done in 2006 and ended in 2012. The study was to Evaluate Early and Long-Term PAH Disease Management.

However; with the advanced medicine we have now, our survival rate is much higher because the medicine evolution has increased from 1 treatment to more than 14 and can be used with 3 combined pathways for any one individual, depending on your overall prognosis of PH. So DO NOT let the web tell you what your life expectancy is, only GOD knows that.  

Another site tells us that the "reason" for PH is because our arteries are scarred.  Another misguided interpretation of what PH is and how it affects us. That is coming from The American Lung Association...you would think they had their facts straight, right?    In essence, our arteries in our lungs are not scarred, they become narrow, blocked or destroyed.

Yet, another nasty site for information is www.Pulmonaryhypertensionnews.com. Did you know that they state there is NO CURE for ANY of the Pulmonary Hypertension cases? We know that not to be true, or at least you should know that.  CTEPH is the only one that is "possibly" cured by having surgery called a pulmonary thromboendarterectomy. They also state that our expectancy rate after 5 years is only 50%, yeah right.  Do not even get me started on the other articles they put on their site that are misguided. The most recent one is the Doppler Echocardiography.

So lets get to the facts ladies and gents.  The most accurate and up to date information regarding Pulmonary Hypertension can be found at these locations:

WWW.PHASSOCIATION.ORG
WWW.PULMONARYHYPERTENSIONRN.COM  written by an accredited PH Specialist Dr. Feldman in Arizona!

So friends, I said it once, and I'll say it again, the internet is not always your friend when it comes to researching. There are many misleading sites that are deceiving and contradicting to what is and isn't the truth about medications, treatments, life expectancy and the over-all information pertaining to PH. So when all else fails, seek information from your PH Specialist as to where the best place would be to do further research. 9 times out of 10 they will lead you to PHAssociation for the most reliable resources available.

That's it for this post, stay tuned for our adventures tomorrow when I talk Stairs and Exertion 😊💜