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.

 

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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.

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.

 

Cold and Frustrated

 

quilt at conference

quilt at conference

I am cold and frustrated. Winter has finally hit Ohio and if it were up to me it could have stayed away.  We do not have a fenced in yard, so whenever the dog has to go out someone has to take her.It was 27 this afternoon when I took Bailey out. Bailey is our dog we got this past April at the age of 15. She is a border collie mix, sweet dog. Bailey is a really slow walker, has to sniff at everything. This past May Bailey turned 16. I didn’t want a puppy, wanted a dog who needed us. But on a good day it takes at least 30 minutes outside for Bailey to finish everything.

I have been inside over an hour and my hands are starting to hurt again. My fingers are still cold. I am typing wearing gloves.I found an old Christmas present of gloves with the fingers cut out to text with a mitten top for over the holes. They work really well. Hope they still make them.  One symptom of pulmonary hypertension is cold hands. Mine get worse in the winter.

Tomorrow I see a new doctor. Can not remember the last time I saw a gyn. My breast specialist referred me. I looked him up, among other things this doc speciality is hereditary cancer. A new doctor to explain my overgrown pelvic AVM too. I have been told some odd things about the pelvic AVM over the years. Lose weight and it will go away. The AVM causes no pain just looks different. Wrong!!!  Hope he is kind.

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.

I am tired

I am tired. December was a long month.

The first part of December I had a surgical biopsy to remove a growth on my left breast.

 Sometime after my October mammogram I found a growth on my left breast.

In 2002  I had breast cancer in the left breast. Part of my treatment was radiation.

The growths are in the skin not part of the breast and what can happen to skin that is radiated.

I saw the surgeon the beginning of November. We scheduled the biopsy for the first part of December.

Before being put to sleep I showed my surgeon a skin tag she said to remind her to remove.

My surgeon looked handed a pen to sign off on another growth that had gotten bigger I the month she had seen me.

That was a first for me. When all was said and done. I was fine. The lumps are atypical lesions or lymphangioma.

Fast forward to December 24th. Dave’s children and families came to our home for Christmas Eve.

His granddaughter is almost two. So while the adults were talking to each other I placed with her.

That was fun, long day but fun. We got pizza again so I didn’t have to cook.

Add to our holiday time we went to an out-of-state wedding. The wedding was on December 28th.

This time I flew without getting hurt. We saw my daughter and enjoyed the wedding. I had an eight-hour wait in the airport for the flight home.

My plane was delayed about forty-five minutes but made good time getting to Cleveland.

In between presents I had to get an outfit for the wedding. First time I bought anything right off the display

For me part of traveling is spacing the water pills so I am near a bathroom when I need one..

Since colon cancer I have limited the junk I eat while traveling too. Don’t want to get sick.

As of January 1st we had a new prescription plan.  I had ordered my Adcirca, picked it up with two hour left in 20014.

Adcirca is my pulmonary hypertension medicine. Our drug store charges 400 a pill. I take two pills a day.

After looking on line the new company does not fund my Adcirca. After a call to my doctor The nurse said I am number 5 with the same problem.

All that will work out.

I am working on something for the upcoming art exhibit. So far thats looking pretty good.

Waiting

Waiting

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?

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.