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.

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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.

Broken toes and the fair

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Believe it or not I am getting over breaking two toes. One on each foot.

I have broken toes before but not two and not on both feet. So I have had a painful time getting around.

During all of this I found a spot on the bottom of my foot that looks a lot like my AVM. Have not made the doctor’s appointment yet.

Our county fair was last week. We went early and listened to the free music. I had three pictures in the fair.

Two pastels and a watercolor. The watercolor of our backyard trees got third place. One pastel of Dave got second.

My other picture got first. So I did good.

I got 2nd place in the pastel other division

I got 2nd place in the pastel other division

The Band Perry played Thursday night. We had tickets. Good concert, next time we need seats farther back.

We looked at some our the animals. I took some good animal pictures for upcoming pictures.

Ron this is for you. This is the picture that got first in the non professional landscape division.

This picture took first in the pastel landscape division

This picture took first in the pastel landscape division

My week

I had my pain management appointment this week. The doctor’s office called at least twice asking if all my records were in the system.

I have had major pain in my hip, knee, and pelvic area due to my large and growing AVM. The AVM I was born with. For at least the last eight years

I have had procedures to block arteries in hope to lessen my pain. I have had the same surgeon since 2007. The only thing she can now do is referral to pain management.

Well the pain management doctor was on time and seemed like he knew what he was doing. This doctor saw me less than five minutes.

He called some of my pain muscular, ordered physical therapy and gave me a higher dose of pain meds.

 I have an appointment next week. After a couple of days to think about everything,

I feel like he patted me on the head and sent me home. So I guess I just deal with it.

This week my scholarship got approved to attend the international conference. The conference is held every other year.

Dave was approved to attend to. So we are off to Indy at the end of June.

Update

Anyone who reads this blog knows part of my Cowden’s syndrome is a very large AVM. The AVM started in my pelvis area.

It has gotten very big over the years. For a long time I was able to get the arteries worked on . My surgeon is no longer able to do anything for me.

She gave me prescriptions and referred me to pain management appointment is May 1. Who knows what they will attempt or if it will work.

Lately I have attempted to put more effort in doing things that make me feel better.

Right now I attempt to stay ahead of the pain with my current meds. I also spend as little time at the chair on the computer.

Who knows what it is about that chair but it is painful to sit in it and painful to get up. Most of the time my left leg is numb before I finish.

I also see the oncologist the beginning of May. He should go over the scan results again. It depends on when you start counting but I am really close

to the five-year mark with no recurrence.

We are hoping to get the scholarship to attend the PH Association at Indy the end of June. They pick the last applications at the end of the month.

George W Bush and I have the same style of painting. I send him an email of my prize winning dog picture and got an answer back today.

If anyone is interred Google George Bush paintings. He is currently having a one man show at his library.

I also have my colonoscopy coming up. Last week I bought the prep, hid it in the pantry and am attempting to forget.

True to form I am having symptoms again. This happens every year right before the scope.

I say a u tube video about different things to do while prepping . One suggestion was to paint your toes.

I can’t remember the last time I did that. So along with buying the jello, pop cycles and broth I plan on getting some nail polish.

Some of the over ideas sound a little to young for me. But who knows!

New opportunities, Looking forward to More!

Global Genes has a contest.   It’ s more of a challenge, use six words to  describe your illness.

Its taken me a while to come up with something to submit.  It started out has big pain in the butt. That was describing my Avm.

AVM’s are part of Cowden’s Syndrome. My AVM is very large, started in the left hip area. After all these years and all the procedures I still have lots of pain.

I submitted New opportunities, Looking forward to More.

It fits the positive me. Not the me at the end of the day in pain.  I have had many new opportunities. I started doing my art again.

Yes I’m still learning. But I am getting better. Through art I have met some really nice people. The art league had a demonstration given

by a gentleman that I have two of his pictures hanging in my house. Afterward I got to talk with him. The library exhibit was a good learning experience.

It was my first time to  gallery sit. It talked to lots of different people, encouraged some preteen interested in art and made sure people voted for best in show.

I have met lots of different  people on-line.

There blogs are encouraging and I have learned many things. Lately I have learned so much about PAH.

Next Sunday I am attending a brand new PH support group. I have never been to any PH support group.

March was Colon Rectal Awareness month. I was part of a Rare Disease Day video. If you haven’t seen it yet, its on the P Ten Facebook page.

Who knows what new opportunities I will have.

I am finished!

I think the first procedure I had on my AVM was in 1983. The doctor told me it would never be completely fixed.

After a day of recovery I went to the radiation department for coils to be put in my AVM. The whole process was horrible.

I was awake and it was very painful. The first doctor was right I needed another procedure.

It seemed to me the procedures got worse not better. All of the early procedures were done through radiology and I was awake.

There was a screen so I could have watched. Someone along the way asked if I wanted to watch.  I never watched and never wanted to watch.

That was one of the few time I was glad I had glasses.

The pain continued to get worse.

I ended up waiting 13 years before having the net procedure in Ohio.

Yesterday I saw my  vascular surgeon. While waiting  we figured out I have been seeing her since 2006.

She has done at least one procedures a year on my very large AVM. This AVM started in my hip area and now effects my knee.

I get some relief but within a year the pain is back.

My breast specialist referred to the AVM has a stomach thing. I have heart failure and Pulmonary Hypertension all due to the AVM.

Lots of doctors have said just take it out everything will be better. The AVM is way to large to take out.

Two times I have had procedures and ended up back in the hospital due to complication from the procedure.

Last year I had a procedure to block some vessels in the front part of the leg. I went in the hospital a day early, had the procedure.

Within twenty fours I was back in the hospital with PH, heart failure and liver issues.

The doctor was very nice, blunt and to the point. I really appreciate doctors like that. She said I had been through a lot. Went on to describe everything used in my AVM.

Just like she said in the past it started to grow in other places. She said the AVM is way to big and she doesn’t want to kill me.

We talked about everything I had been through. She said if I had a major change she would attempt. Pain test but nothing that’s new.

I showed her my art . Starting that is new. She was very encouraging about my art.

My next step is pain management. I am not sure what pain management is.

I plan on checking into pain management next week.