Why not just get rid of it?

Its been suggested that because of my high rick for cancer just get rid of it. Your know have surgery, take it out. Everything will be better without the risk right.

No, I have Pulmonary Hypertension. Pulmonary Hypertension is high blood pressure of the lungs. Take a look at http://www.SometimesItsPH.org

The site give a good definition of PH. I have many of the symptoms. Anyone can be diagnosed of PH. About half the people I met at the last convention are on oxygen. I have many PH symptoms but so far am not on oxygen.

I had complications with being put to sleep for surgery because of PH. My doctors have said its better for me to avoid surgery when possible. So I am not a candidate for any cancer prevention surgery.

I was diagnosed with pulmonary hypertension the same time I was diagnosed with right side heart failure. But thats another post.

A couple of sites

SometimesItsPH.org

PHAssociation

AmericanHeartAssociation

Check out heart failure on the American Heart Association site.

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Baby its cold outside

Baby it’s still cold outside. We are having the coldest February on record.

Last week school was closed because the wind chill was expected to be minus 20 below.

It didn’t make minus 20 below but it was still cold.

My end of the couch is close to the window. Its cold enough to make it harder to breathe watching television.

I have a pair of mittens on my end table. This week I have had to put them on sooner because of the cold.

Pulmonary hypertension make my hands so cold at times they hurt.

I have been lucky, my next doctors appointment is not till March. I have a yearly CT scan.

Last year I had a reaction to the dye so this time I have to be premeditated and have a driver.

February being Go Red for Women month I will mention I continue to have heart palpitations. They come at strange times.

 Last for longer than I would like and it doesn’t matter what I am doing.

The doctor says he can put me on meds for them but the meds would make me more tired. So I live with them and the cold.

Dave brought home roses for Valentine’s Day. That was nice and very unexpected. He asked what I wanted.

I wanted pastels in the colors of nature. So he ordered me soft pastels. Staying inside has not been bad,

Thats Me

Dave says I am more tech minded than he is. This is not one of them.

After getting out of the hospital last year I got a lung doctor for my PH. Her medical student came in and asked lots of questions.

He left and was gone for a long time. To long when your tired and want to go home. So I left Dave in the room,

Found the medical student and what ended up being my doctor by the computer attempting to find someone else with Cowden’s Syndrome and PH.

They could not find anyone.

The doctor came in, asked lots of questions. She did tests and put me on brand new PH medicine.

When everything was over she said she was going to do a paper on me. The last three times I saw her I asked about the paper.

Her answer was it takes a long time to be published. This fall she moved to another part of the hospital. My new doctor said the same thing research takes time.

For whatever the reason I couldn’t get the cut and paste to work. So if your interested Google PTEN and pulmonary arterial hypertension.

Thats how I found it.

Abstract
The pathogenesis of pulmonary arterial hypertension (PAH) exhibits many neoplastic-like features. Cowden syndrome is a difficult-to-recognize heritable cancer syndrome caused by a germline mutation in the phosphatase-and-tensin homolog deleted on the chromosome 10 (PTEN) gene. PTEN regulation has been implicated in cancer development and, more recently, PAH pathogenesis. Here we report a case of PAH in a patient with Cowden syndrome and the response to pulmonary vasodilators.

2015

I have been busy finishing up a couple of pictures for the upcoming art show.

Animals again this year. Every year I have to learn have fun making the pictures.

The more fun a picture is to make the better it turns out.

The first picture is a bear.

My brother gave me a picture my grandpa had made of a bear and I thought this would go good with his.

I think both he and my grandma would really like that.

I finished the second one yesterday.

The second picture is our neighbors cat. While I was taking pictures of her flowers the cat came by me.

Dasher mewed wanted me to pet him. The poor cat was skin and bones.

Dasher passed away about a week later. He was a rescue.

So I did his picture to remember any pets that passed away in 2014.

It turned out really good. This weekend we plan on framing the pictures. Take in day for the art show is January 27th.

So I will post the pictures after take in day.

My next doctors appointment is my yearly CT scan because of colon cancer the middle of March.

A week after I see the oncologist to go over the results.

The skin doctor is at the end of March. So far I go twice a year and he removes something.

I have a new pulmonary hypertension doctor. He had never heard of Cowden’s, but is willing to learn.

I have an upcoming echo, blood word and six-minute walk when I see him in June.

He wants to talk about doing a right side heart cauterization again, so he has beginning numbers,

and to see if the adcirca is helping my pulmonary hypertension.  I have had two cauterizations since 2007.

Lately my fingers have been getting really cold. This starts around four pm.

Yes I know its January and  I live in Ohio so I should be cold. But My fingers get so cold they hurt.

I have started wearing gloves inside, taking them off right before bed. It seems to help.

My next art project is to make something for the twitter art exhibit.

I will post the finished project.

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?

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 !!