Busy Summer

Me at the conference

Me at the conference

 IT has been a busy summer.

I have been doing the library summer reading program for adults. Started doing the 211 program connected with our local rec center.

The county fair is the next week. I am showing three pictures. The Band Perry will be at the fair. We have tickets.

At the end of June I rejoined our local rec center.

Along with I want to do, have been  tired . At the beginning of the week I broke my little toe. It still hurts.

So far the toe has been swollen and I have yet to get a tennis shoe on.

A long time ago our printer broke.  Now anytime we need to print something

we usually go to the library. Not having a printer and a broken toe has slowed me down this week.

Daves Time

Daves Time

At the PHA conference last month I signed up to help with the media blitz.

Someone made  thirty-second public service announcements about Pulmonary Hypertension.

I am to make ten calls in ten months encouraging tv stations to play the public service announcements.

Hopefully my toe will be feeling better and I can start the next week.

This is mostly looking out our front room window. Another picture going to the county fair. I have never shown this. We will see how it does.

This is mostly looking out our front room window. Another picture going to the county fair. I have never shown this. We will see how it does.

But for now here’s how to see the PSA’s.

Go to PH  association then click on get involved. From their click on sample PSA’s.

Let me know what you think. I have yet to see them on tv in my area.

What about you?

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PH and me.

quilt at conference

quilt at conference

One of my medical problems is Pulmonary Arterial Hypertension.

Pulmonary hypertension is not well-known. I had never heard of it. All I knew in 2007  was I was having a hard time breathing.

It felt like something was sitting on my chest. I was throwing up and didn’t want to eat. All this started on the way home after a procedure on my AVM.

It took three weeks in the hospital and lots of tests before I started to feel better.

Walking up stairs, especially carrying the laundry can cause me to be short of breath.

I had to give up any exercise classes. Over the years I learned  to walk  at my own pace.

There are times its hard to walk and carry on a conversation.

In April Dave and I went to a PH support group. The support group leader wants to do a fund-raiser for PH.

Around here nobody knows what PH is. So this is my attempt to let others know what PH is

At the  conference there was a booth giving on free business cards about PH.

We were told to use the business cards to explain about ph.  I haven’t tried them out yet but plan to at our family reunion.

One side describes what Pulmonary Hypertension is:

  • Pulmonary Hypertension (PH) or high blood pressure in the lungs is a chronic and currently incurable disease that can lead to right heart failure; treatment can help
  • People with pulmonary hypertension often do not look sick
  • Common symptoms include breathlessness, fatigue, dizziness, hoarseness, chest pain or heaviness and swelling of the arms and legs.
  • There are multiple treatments available for ph

Web sites to check out:

pha association

lipspaintedblue.com

PH Conference Info

IMG_0462I enjoyed attending the 2014 Pulmonary Hypertension International Conference in Indiana.

Dave and I had a good time.

It was a four-hour drive.  Yes I was really tired when we got home.

When everyone got together for meals and programs they there were two big screen televisions so everyone could see.

For someone who had only met two other ladies with PH it was really big. There were people of all ages, from all parts of the USA and I think 35 countries.

 All ages attended. We saw families with babies who had oxygen. Adults with and without oxygen.

They had a kids room with lots of activities. The PH kids went swimming and to the children’s museum.

There was lots to do lots to see and lots of walking.

Every conference there is a fashion show. The fashion show is to hide or flaunt the oxygen and iv drug ports.

I was right in the middle of going through the research room during the fashion show. Then sitting in another line for a blood draw.

Most of the sessions I attended were medically lead. I attended the basics of PH. Every time I had heard them before I was in a hospital bed.

I went to the long-term survivors group. If you were diagnosed eight years or longer you are considered long-term survivor.

Dave went to the caregivers support group.  He had not been to a caregiver support group before.

IMG_0466

There were computers set up to blog from the conference. I tried a couple of time but could not get them to work.

I got some informative and useful handouts. At one booth I got a big stack of business cards.

One side had wad Pulmonary Hypertension is. The other side was about how doctors look for horses instead of zebras.

I had read about doctors needing to look for zebras on another blog. Looking for horses means doctors need to think what is more common first.

Sounds familiar !!

Getting ready for PH Conference

Between having a sick dog, my doctors appointments and getting ready to go to the PH Conference,  I have been busy.

 Bright and early Friday we are going to the Pulmonary Hypertension International conference.

This is my first time attending the conference. It should be educational and fun.

Part of the conference is the research room. Researchers from all over the country have the opportunity to talk to people with PH.

Two weeks ago I had an echo, did the six-minute walk and saw my PH doctor.

Friday I had three appointments at the main campus on the same day.

The tech doing my echo asked Dave if he wanted to watch. He smile and followed us to the room.

No one had ever offered him the opportunity to watch before. He got to see what the test was like and why it takes so long.

The six-minute walk was next. this was my third six-minute walk. I did about the same as the last one.

My doctor’s appointment was next. She did not have the results of the echo.

Dave asked what kind of pulmonary hypertension do I have?

The doctor explained I have Class one PAH with Cowden’s Syndrome and high volume heart failure.

She went on to say from her research, I am the only one.

So the doctors at the conference are going to want to talk to me. When I was little I use to say I am one of a kind, who knew.