First PH Support Group

Saturday I went to a brand new support group for pulmonary hypertension.

It was a first for me. I gave Dave the opportunity to do something els but he went. The meeting was held at a library about 25 minutes away.

The leader said the PH Association had sent out 200 hundred invitations. Two patients and two caregivers showed. up.

I had a good time, learned some things about PH. The support meeting are going to be every other month.

She wants to have a walkathon. G talked about practical issues we face everyday. She said if the hospital doesn’t know what PH is to leave.

I asked about nurses who have asked me if I use oxygen at home. Now I don’t have oxygen with me when I check in to their floor.

So know I don’t use oxygen at home. I use to think what an odd question, never thinking they just didn’t know.

The leader talked about the upcoming PH conference.

They have conferences every two years. This on is in Indianapolis Indiana. She had went to the last conference.

They have everything from support group meetings, fashion show,

a breakfast with a doctor all you do is sit at the table with the topic you want more information about.

She showed us her tiny medicine pump. I was amazed at how small it is. You would never know she was wearing the pump.

If you have ever had a pump let me tell you its a big deal.

We still have time to sign up and go to the conference. So hopefully I will get to go.

Google PH association and check out the conference. Maybe I’ll see you there.

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.

Doctors appointments!!!!

Lately I have been really frustrated with doctors, appointments, scans and anything medical.

Last week I had a CT scan. This CT scan was for my fifth year since being diagnosed with colon cancer.

I made it to the office on time, even brought paper and pencil to draw. The contrast looked clear and didn’t taste that bad.

 I ended up having a reaction to the contrast, had to call Dave to drive me home.  The nurse gave me a Benadryl.

From all my experience no news is good news. I had a big surprise,  my oncologist call the next day.

No cancer but I have a small intussusception of terminal ileum. This explains the symptoms I have been having.

The last thing he said was make sure to keep my appointment with him in May. Thats right before my colonoscopy.

Monday, Tuesday, and Wednesday I have appointments. Monday I have my breast MRI. This is my second breast MRI and the first was not fun.

Tuesday I see the dermatologist. This ones a follow up from six months ago. I ended up in the operating room to remove bumps from my breast.

Everything turned out good in that.  I have new bumps for him to remove. But the left breast never looked better.

Wednesday’s appointment is with the vascular surgeon. My AVM really hurts. The pain medicine helps some. Staying off the computer helps too.

How they all ended up in the same week I have no idea. It should be busy.

Another Art Show



The pictures are down from the library Art Show. Tomorrow the award winners are displayed at a local bank for two months.

The bank show will have the award winners plus two extra pictures.

My award-winning pictures are in February’s post.

Begging is my sister’s dog. Its Thanksgiving day right before all the food goes to the table.

Emma was attempting to get a treat. She didn’t care who gave it to her. I think it came out really good.

This time when asked I will have a price for this picture.

Appointments start again

It’s still really cold in Ohio. Colder than when I lived in Alaska.

So I have had plenty of time to work on my art.

This past Monday was the Medina County Art League meeting. The demonstration was really good. Someone did oil portraits.

Saturday afternoon I get to pick up my pictures from the art show.

Tuesday my pictures are in the gallery at our local bank for two months. So far I have a dog theme going.

Right now I am finishing up the last picture.

I have way too many appointments coming up. One week has three appointments on three different days.

At least I didn’t have to go out in the cold that much. I still have neuropathy in my feet from chemo in 2009.

The pain gets worse the colder it gets. The cold effects my AVM too. My hands get cold enough at night to put on gloves while watching tv.

That reminds me of my grandma. I have PAH to thank for that.

I have a five year colon ct screening on March 11.

My colonoscopy is scheduled for May. At the beginning of every year I have bowel issues. The GI usually reminds me of my many issues and we talk after the scope.

The scope takes care of the issues. So I am looking forward to May.

February Appointment

IMG_0161Our Weather  has been really bad. So far kids in my school district have had nine days off because of bad weather.

This sounds old but I don’t remember getting that much time off. This winter we had lots of snow and temperatures below zero.

Kids were out of school for at least two days in a row right after Christmas.

Today we have wind enough wind to have high wind warnings till tomorrow.

I have stayed inside most of the time. When it’s that cold the PAH makes it hard to breathe, my arm throbs, and I can not feel the bottoms of my feet gets worse.

That is left over from chemo. That gives me lots of time to work on my art.

However the reason I have only had two doctors appointments this year. My last appointment was the lung doctor.

My cough is back. She did blood tests and scheduled other pulmonary tests for June.

Dr F talked about the research. They are studying changes in BMP pathways. Some genes result in vascular disease and some genes result in colon polyps.

I have both, PAH and lots of colon polyps, along with Cowden’s Syndrome.

So after talking more with the doctor I am part of another research study. Like the last couple of studies all they want from me is my blood.

Then I am finished. I will not know the results of the study or if my blood helped. That is all right with me.

I do remember my dad taking part in research during his colon cancer in the 70′s.

My sister is in a couple of studies, one for American Cancer Society and one studying the sister who did not get breast cancer.

So it’s a family thing.

We had an escort waiting to escort us to the lab. Once at the lab he waited in line for me.

Another doctor talked to Dave and I till they called our name. She talked more about the study.

I asked why only three tubes and not enough  stickers were on the table.

The lab tech only had three tubes waiting and there was no bag for the study blood. I handed him the paper I was given, he went and asked the doctor.

He needed my paper and five bigger tubes for the study blood.  So he drew the blood walked out with me and gave the blood to the doctor.

She thanked us again and made sure we knew the way out. Another appointment finished.