Do You Know What Pulmonary Hypertension Is?

You might have it and not know it

May 5th is World Pulmonary Hypertension Day
But November is Pulmonary Hypertension Month

This is a horrible, debilitating and deadly disease
and much too little is known about it

Not well known

Pulmonary Hypertension is a fatal disease that many people have and don't know it. It is not well understood by most family physicians, and they will often diagnose asthma instead. Even some hospitals will refuse to treat a PH'er.

My wife has been on a Facebook group with other PH'ers, and we have lost several of them in the past two years. One of them went to her local hospital in a city of 50,000, and they refused to treat her. They sent her on a 5 hour road trip to the nearest hospital that would treat PH'ers. A few days later she died.

Symptoms

The major symptoms are:

Shortness of breath (dyspnea), initially while exercising and eventually while at rest
Fatigue
Dizziness or fainting spells (syncope)
Chest pressure or pain
Swelling (edema) in your ankles, legs and eventually in your abdomen (ascites)
Bluish color to your lips and skin (cyanosis)

Racing pulse or heart palpitations


What is it

Briefly, it is an increase in blood pressure between your heart and lungs. Left untreated, it can destroy your heart in as little as two years. With treatment, you can survive for another ten to twenty years but life will not be easy. There are no age restrictions that apply to PH; anyone is susceptible.

To find out more about this horrible disease please visit the Mayo Clinic.

For support or to make a donation to badly needed research, please visit the PHAssociation

Pulmonary Hypertension - Fatal, Incurable - HELP

November is Pulmonary Hypertension month

PH is incurable and fatal. PH'ers are desperate for a cure. 

You can help.

Tara Suplicki:

Day 22 We are in the fight for our lives here...

Every Breath that we take is harder than the last if we are doing anything such as physical, and for some of us it can be just as little as talking that takes our breath away. 

Yes medicine can make us stable for a while or even help us improve slightly...but it will never cure us... 

Even a lung transplant is not a cure for us. It is just a band-aid to hopefully give us more time with our family and friends. 

Help us find a cure!! 

Help us get our bills through Congress!! 

Help us get our Disease known by more people!! 

I want to see the World Periwinkle next November!!

COLOR THE WORLD PERIWINKLE DAY 

Pray PHor a Cure

This young woman, as beautiful inside as outside, is one of many amazing, young women who have left husband and children behind because there is no cure. Shawna left us 2 years ago, making the world a poorer place for her departure, but enriching Heaven with her arrival. I wish we could have known you longer.

PH also effects men and children; children like 

Katie Grace and Aubrey Starr. 

Please pray! Pray for a cure; pray for those suffering, trying to breath; pray about what you might do to help. But just pray!

Aubrie Starr to Get Right Heart Catheter September 1st

Aubrie is scheduled to be in Levine's Children's Hospital, Charlotte, North Carolina, September 1st.

She will be sedated and receive a right heart catheter.

Because of the risks she faces having pulmonary hypertension and using anesthesia she will be accompanied by two cardiology anesthesiologists.

We do not know yet if she will be admitted to Levines or released the same day that will be determined during and after her procedure.

Please keep her in your prayers leading up to this day. Pray God will give us clear results. That we will get clarification we need about the true conditions of her lungs.

With every PH child a RHC is dangerous; please pray for her safety and God be with each Dr, nurse and staff member involved in her care.

Thank you all for your prayers, help and support thus far!

Please put a picture of Aubrie somewhere where you will see it and pray for her each time you do.

Hope PHor Aubrie Starr Update 23 July 2015

Aubrie saw her cardiologist today.

She will be having another right heart catheter before the end of August. After talking with the doctor I have decided that the catheter lab physicians will not be putting a pin hole in Aubries left atrium; I am not comfortable with the risks. This is a procedure she may receive in the future but I told them not now, not yet, not until I feel it really is something that would benefit her more than put her at risk for more complications.

We are still waiting to get physical therapy setup as well as speech therapy. I am hoping these will move along quickly and be started soon.

Aubrie will be due for a follow up appt in Cinncinati before the end of the year. We have began raising funds to help us travel and cover medical expenses and lost wages. Anything will help. 

Thank you all for your continued support and prayers.