Update

 

I just finished the snowman

img_1093I usually don’t make New Year’s Resolutions. My resolutions were mostly art related. Limit the number of exhibits I did. Be part of the Christmas exhibit in Marie’s Cafe on the square. I did both. I’m still membership chair of our local art league. Next year I would like to do more for pulmonary hypertension.

I have shortened my list of doctors by two. Said good-by to the GI doctor and my oncologist. GI doctor canceled my appointment. After talking to my PCP we decided she could take it from here. The oncologist has an ultrasound scheduled for March. After that if I need him I know where to find him. My thyroid is good enough to see him just once a year.

My PH is progressing. I am now on two PH medicines. The second one is inhaled. It comes from a specialist pharmacy in the mail and cost big bucks. We are very grateful for good insurance and Caring Voices. Caring Voices awarded me a grant for co-pays.

 

This I called Playhouse. Its made from junkmail. One of the shows I wanted to do was In The Pink. Small pictures are raffeled of for our local cancer center.

 

img_0987

My arteriouveous malformation continues to grow and give me problems. An arteriovenous malformation is arteries and veins grown together. It is no longer safe for me to have them operated on. Hopefully I won’t get another man cold and the new medicine will work.

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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.

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