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.

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Guess what I saw?

Angiogram Image of AVM

Angiogram Image of AVM (Photo credit: Eric Gilliland)

Last week I look up the summary of my visit to the heart doctor.

It was a check up. I had questions I wanted answered. The visit went very well.

He said I am the same, no better no worse, as far as my heart goes. My heart failure is cause from the massive AVM.

My AVM is part of Cowden’s Syndrome. I have had the AVM since birth. It started in the hip and pelvis area and was not a problem till my early twenties.

This past year my vascular surgeon gave me pictures of my AVM. Its extra-large and now goes to my right knee.

Ok , I did find out some new stuff. I was not supposed to make it a year in 2007. So the fact  I’m still here is a surprise to most doctors.

Didn’t realize that. We now have access to some of the doctors notes through  on-line my chart. I saw a list of all my medical problems.

Pulmonary hypertension is first, followed by right side heart failure. Part of the notes were about my  medical disability. First time I had seen it written.

Even though I have been on disability for a while it was still hard to see. It took some time, but I know it’s for the best.

What I wanted to know

Cleveland Clinic Lerner College of Medicine

Cleveland Clinic Lerner College of Medicine (Photo credit: Wikipedia)

 Lately I wish I had never heard of Cowden’s Syndrome. Everything usually comes back to Cowden’s  Syndrome.

My AVM is very large.

The large AVM has given me right side heart failurepulmonary hypertension and extreme throbbing pain.

 I found out about my heart failure, pulmonary hypertension after a procedure on the AVM  in 2007. Cleveland Clinic and our insurance company provided lots of educational  information.

The insurance company has a nurse call every three months to check on my progress. They sent me a digital to keep up with my daily weight.

I had a phone appointment with a dietitian to help with the low salt diet. I had help finding out about heart failure.

I had an appointment with the cardiologist Monday morning.

I have been going to him since 2007. He reminds me of Dave with a slight southern accent.

Over the years I’ve found out he is one of the top heart doctors at Cleveland Clinic.

All appointments start with seeing the nurse first. When she was finished she paged the doctor.

Every time Dr T walks in with  Hay Hay, how’s it going?

He asked lots of questions.

 This time I had some different questions for him.

 In  March the procedure I had worsened the pulmonary hypertension.

The pulmonary hypertension is now sever. I wondered how sever? Was it really that bad.

 I expected Dr T to tell me it wasn’t that bad.

He said I was doing really good considering in 2007 they didn’t expect me to live another year.

Dave is still upset over that.

Now I don’t like hospital, never did. There are much better things in life than to have all kinds of doctors appointments.

Anyone who knows me knows I have a high tolerance for pain. When I want to schedule an appointment for a procedure on the AVM I have to be really hurting.

 In 2007 long before  Cowden’s Syndrome ,losing around 45 pounds,  colon cancer and everything that goes with it Dr T want me to have procedures on the AVM every six months.

That was not always possible.

My other question was can the vascular surgeon help me anymore? Is the AVM to large for any relief? Dr. T said the vascular would talk about it.

She is really close to not being able to help me any more. I had missed my scheduled follow-up appointment with Dr S.

So we left Cleveland Clinic in shock. I am grateful to still be around. Lately I have been concentrating on what I can do instead of what I can not do anymore.

That’s  where art  my  come in. This past weekend I was successful in managing my pain and had a  great time watching the Cleveland Indians

win with my brother and family from out-of-town. Dave is talking about another cruise.  WOW is right around the corner. This year I will have a better decorate bra

and be able to attend the dinner.  I am continuing to learn more about pulmonary hypertension.  So to quote a friend I have only met on-line, I will “keep swimming.”

I’m learning more about PH!

Stairs

Stairs (Photo credit: Wikipedia)

 I understand I why I have  procedures on my AVM. Its gotten so big. Having the procedures the procedures help with  the pain.

Dr S can no longer control the pain in the hip area. Having the procedure helps with the heart failure. I realize that she can not take the AVM out, its gotten way to big.

Now I understand why  the procedure helps with the pulmonary arterial hypertension.

After some reasearch I realize some of my minor issues were PAH symptoms. I have a cough that doesn’t go away. For a long time I told doctors I had a smokers cough without ever smoking.

I avoid going up steps. Anymore than one flight of stairs I get dizzy, slow down and most of the time have to stop and rest. That gets old and can be hard at a public place.

Just like my grandma had I have cold hands. Awhile back our dog got loose. Then I noticed I couldn’t walk and call the dogs. It seemed odd at the time. There are times now I get really dizzy. This week the heat didn’t help.

All of this is symptoms of PAH.  This past March I had to return to the hospital after a procedure. After lots of tests and another right side cardiac catheterization.

My pulmonary hypertension had changed to severe.

The lung doctor is at Cleveland Clinic main campus. My first visit with the lung doctor was different. Her student came in and talked. It seemed to take a long time for the doctor to come in.

I ended up asking where the bathroom was.

Right by the bathroom I found the doctor and her student. They were looking for any published research on Cowden’s Syndrome and pulmonary hypertension.

The only published research at that time was a lady in France. Cowden’s Syndrome can be interesting at times.

I have completed the lung tests. She put me on a new medicine. My next appointment with the lung doctor is September.

I have found support in the PH association. They have a great web site and are on Twitter. Some day I hope they will visit Cleveland. The PH conference in 2014 is in Indy.

So we hope to attend. I hope to learn enough about PH to do some guest blogging.

My AVM is one of the many things I  deal with because of Cowden’s Syndrome. I see the heart doctor on the 29th.

This week I finally got the results of my bone scan. The bone mass on my left side is worse. So I was referred to another doctor.

The first available appointment was Oct 3. I also changed my appointment with the breast specialist. her next appointment is December 12.

I guess its gonna be a long winter.

Wednesday

Lisa Loring as Wednesday in The Addams Family ...

Lisa Loring as Wednesday in The Addams Family original series. (Photo credit: Wikipedia

In March I had a procedure to relieve some of the pain from my AVM’s. Over the years my AVM has grown from the groin  to my hip and now down to the knee.

The pressure of my AVM puts stress on my heart and I have right-sided heart failure. The high  pressure of blood flow has caused pulmonary arterial hypertension.

The knee issues have been for just this past year. I have know about the heart failure and pulmonary arterial hypertension since 2007 after a past AVM procedure.

At that time I got a cardiologist. Treatment for the PAH was only given through an IV. After the March procedure I had lots of issues, everything from heart palpitation, being yellow in color and it was harder to breathe.

After running lots of tests, the doctors found out my PAH is now severe.

Wednesday

Wednesday (Photo credit: Images by John ‘K’)

Tomorrow I see the lung doctor again. I did not need a lung doctor till this March.  She will do the six minute walk test again and see if the medicine is helping.

One of my questions is does PAH get better? Dave lost weight changed his diet and no longer takes his blood pressure meds.

 During our last visit the doctor F said they only found one other case of Cowden’s Syndrome and PAH. That lady lives in Paris. Who knows maybe we will get to Paris someday.

Hope

English: Blue Star

English: Blue Star (Photo credit: Wikipedia)

  The  blogs are helping put a face on having PTEN issues.   March is colon rectal cancer awareness month. In Medina we have a local free paper.

This paper has everything from local events to the best place to get a hamburger. I wrote a letter to the editor about getting a colonoscopy, my colon cancer and do not make the same mistakes I did.

The next day our superintendent of Schools contract was made public, perks, bonuses and all. My letter was not published.

I will try again next year. I’m glad for the blog because I posted the letter.

Blue Star Quilt

Blue Star Quilt (Photo credit: Adventures in Librarianship)

While in the hospital I was asked for blood to participate in another research study. My AVM is the cause of my heart failure.  While in Cleveland Clinic I saw the cardiac team.

The doctor on call does research. The Cowden cells will help her research of Arrhythmia. The Dr said after the blood is drawn that’s all they need from me.

I will not know if they used my blood or how the research came out. The nurse I worked with was very nice.

She gave me a hug after everything was finished. A tired doctor came with her and thanked me to.  The medical student I met was doing rounds with this team.

My Cure magazine came this week. Cure is a free publication for anyone effected by cancer. I have been getting it since 2002.    Cure is on-line at http://www.curetoday.com

 In the spring 2013 issue has an article about Risk management: Living in the past, present and future. Click on Genetic Risk. PTEN is listed.

 Hopefully a mutated PTEN gene will become more well-known.

...Hope...

…Hope… (Photo credit: ĐāżŦ {mostly absent})

Getting ready!

Cleveland Clinic Miniature

Cleveland Clinic Miniature (Photo credit: House Photography)

 Yesterday I went to Cleveland Clinic for a nurse visit to get  clearance for my AVM procedure on March 15.

I will  be admitted March 14 and observed because of my heart failure issues. The bigger the AVM gets the more painful it becomes, the more effected the heart failure issues are.

Hearts and Candy

Hearts and Candy (Photo credit: Rdoke)

It was nice to see the doctor for thirty seconds. He said I was right about two things.

I will be in the heart failure wing which means the new rooms.

All the rooms are private rooms with flat screen tv.The doctors said for me the heart failure issues are under control.

So I could have phoned everything in. But I understand they need to be sure.

So it’s a week to go for my procedure. I have all ready started doing things to get ready. I got my hair trimmed last week. My bangs would not stay out of my eyes.

All ready renewed my drivers licenses. The picture is not bad this time, my weight was good too.

I renew the plates for my car too. In Ohio they are due right before your birthday. The food seems to get better each time I am there.

The hard part is my pain will not go away, it will grow back.

baby girl

baby girl (Photo credit: Jon Ovington)

Tonight I am currently on baby watch. My step daughter in law’s water broke last night. No word yet. She is having a girl, currently know as “Baby Girl”

So when we have a baby we will know the name.

CLARA JEAN was born March7 at 1145 p.m.