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.”

Benefiber is back

Benefiber

Benefiber (Photo credit: Wyscan)

 Benefiber has been off the shelves for a long time. Our Sunday paper did not even celebrate with coupons.

If it were up to me one of my local stores would be giving out free samples. None of that happened.

But I don’t care. The generic fiber is not the same. Good luck trying to stir it in lemonade. It is tasteless.

The orange flavored stuff works. But the taste was bad. Try getting the orange stuff down after eating hospital food.

I had my right colon removed due to colon cancer.

So I have appreciated having the help keeping regular.  Benefiber I’m glad you are back.

WOW

Art Bra, Front

Art Bra, Front (Photo credit: campbelj45ca)

Our free paper had an article about WOW. That stands for Women helping Women. It’s a local organization that raises money for uninsured and under insured women to be able to afford mammograms.

WOW has a bra decorating contest. Anyone can enter. The bras are displayed and votes are a dollar a piece. WOW has a dinner and a local lady comic is performing.

The decorations were pink complete with pink and white M&M’s.

Last year I decorated a bra, but could not attend because I broke my foot. Me and the crutches were really slow.

So I am looking forward to decorating a better looking bra this year.

The article had a picture of a 2010 bra. It was a pink bra with tool box written on the cups. Pink tools and a hard hat completed the display.

I need to do a whole lot better this year. I used Lego‘s to decorate my bra. Who knows if they all stayed on the bra?

Any one have a great idea for this year?

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.

My mini me

My daughter Val. I'm not sure how old, probably around 15 months.

My daughter Val. I’m not sure how old, probably around 15 months.

This is my daughter Val. She is currently 31, and drives a city bus in Nashville. Driving anything that big would scare me. She has two dogs and a horse.

Val is a little me. In her younger days she had friends of my dads calling her Tami at church. When she was born doctors were concerned about her head size.

I asked them to measure my head. The doctors calmed down but scheduled her for a scan. The scan turned out fine. Thanks Val for letting me post this picture.

 Love you!!!

My Twitter picture is Val’s horse.

Me age three months.

Me age three months.

Even our baby pictures look alike. We look at lots of baby pictures now that Clara is here. Boy my head started out big.

It still amazes me I passed the Navy physical and spent about tow years in the Navy.

I hope research continues.

Happy 16th

 

English: Lagoon view, Cleveland Museum of Art,...

English: Lagoon view, Cleveland Museum of Art, Cleveland, Ohio, USA. (Photo credit: Wikipedia)

Happy Fourth of July. It’s also my sixteenth wedding anniversary.

 

The plans are to take Daisy to dog camp. Our town shoots the fireworks off at the high school stadium tonight July 3rd.

 

Sixteen years ago we could watch the fireworks from the front yard. The back yard touches the practice field of the high school.   Thats is not possible because of all the tree growth.

 

So most of the town will be around the high school ready to watch the fireworks. The local parade is tomorrow. It starts at the high school.

 

This year we cannot forget the chairs. Then off to dinner.

 

 

On the way to school

On the way to school (Photo credit: Wikipedia)

 

 

 

Dave plans on leaving early July 5 for Jacksonville. He is helping his son paint and getting some grandpa time.

 

I have plans to see the new Sandra Bullock movie. Dave said it got four stars.

 

Sometime this summer we hope to get to an Amish Auction. They have great quilts. The best home-made ice cream you have ever had.

 

Sometimes you can get a great deal. We haven’t been in a while though.

 

Power Duck Tape

Power Duck Tape (Photo credit: Bon™)

 

I live really close to Cleveland Ohio. Go Tribe!!

 

Cleveland is close to Avon Ohio. Not to long ago Avon had the Duck Tape Festival.

 

Our local paper had an article about a ten-year old boat who is selling his duck tape crafts at a high-end clothing store on our local square.

 

 He does a great job.

 

 Dave and I went on a duck tape hunt. There are tons of colors and prints, even sports theme duck tape.

 

I was inspired to make something out of duck tape. Hopefully mine turn out half has good as his.

 

Duck Tape Bouquet

Duck Tape Bouquet (Photo credit: Bunches and Bits {Karina})

 

I had not got the results of my bone density test. I am a little afraid to ask, but will after the holiday.