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.

Advertisements

Update

I just haven’t felt good in a while. Been having more heart palpitations. Losing weight without trying. We had a family wedding over Labor Day. Most people would gain some weight. I lost two pounds. The wedding was fun. Dave and I had a good time in Columbus. We did lots of walking. I looked good and didn’t break any bones. Our 17-year-old dog got sick from being boarded.

Early September, I had a pulmonary hypertension appointment. The last time I saw the doctor I did the 6 minute walk test and two breathing tests. The six-minute walk test is pretty easy. They hook you up to a watch type machine that measures your oxygen levels and you walk the hall for six minutes. Everyone stops for you. For the breathing tests they had you nose clips and walk you through the test. I hate the nose clips.

Both test showed less lung function. The doctor had to stop and think. It ends up he added another medicine. So after almost a month I am waiting for the speciality pharmacy to return my call. The insurance finally approved my Tyvaso. The next step is to learn how to use the medicine. Tyvaso is inhaled. Pulmonary hypertension medicine is known for side effects.  Add that to I need to have a couple of teeth pulled. All this has to be finished by the end of the year.

Yes I am still doing my art. Two of my picture are hanging locally. I contributed to In The Pink this year. A local store gives artist 6 by 6 canvas and then raffels the pictures. Money goes to a local cancer support center. I have been attempting to lessen the number of doctors I see.

Our Cleveland Indians are playoff bound.

 

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.

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.

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