Wednesday, December 18, 2013

PH Community Shares Similar Stories of Symptoms and Misdiagnosis

We recently asked our online community on Facebook to share what symptoms they experienced that led to their diagnosis with pulmonary hypertension as well as whether they were misdiagnosed. We discovered that the most common symptom shared by patients was shortness of breath. Many touched on how activities like climbing up a flight of stairs or even walking from one room to another were not effortless like they used to be. Patients also shared symptoms like bluish lips and skin, fatigue, fainting, coughing, chest pain and dizziness.

Unfortunately the most common symptoms of PH are also associated with many other conditions. As a result, PH patients are often misdiagnosed with other, more common chronic conditions such as asthma or allergies. Many patients are told they were simply overweight. It is important for doctors to consider PH with patients facing such symptoms after ruling out other conditions.This is what motivates our Sometimes It’s PH early diagnosis campaign.

Patients will reach the advanced stages of the disease by the time they are finally diagnosed by right heart catheterization if proper action is not taken. Almost three-fourths of patients have advanced PH by the time they are diagnosed. The median survival rate without treatment is approximately 2.8 years, making the need to obtain a rapid and accurate diagnosis urgent. When patients are caught early in the disease (while still in Class I and II) they have improved chances for a better life and can often continue working. By considering PH, we can reduce average time between PH symptom onset and diagnosis, avoid inappropriately prescribed medications, and slow the progression of PH, securing an optimistic life for the patient.

Read some of the things the community shared below (click on the image to see a bigger version). Read diagnosis stories | Share our early diagnosis video


Jean said...

I had much the same experience as these people. I was told by a doctor whose diagnostic skills I respected that first I had COPD. Then he decided I had asthma, and then the inhalers didn't work. It took my really bright doctor in another state (about four years later) that I actually had PH. A series of visits to a mejaor medical center proved no COPD, no asthma, but it was indeed PH (caused by left heart dysfunction). Twelve years agter the definitive diagnosis, I am more stable, but still with difficulties. Bless the doctor in Kansas who picked up on the PH diagnosis!

Anonymous said...

My 33 yr old daughter, Mary died of this on Nov 17th...we didn't even know she had it until 4 days prior to her succumbing to it. The doctors were more interested in finding a digestive disorder. No one spoke to us about her heart until the 15th. This is very frightening as a parent watching your child go through this.