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.”

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4 Comments

  1. No My AVM started in the pelvic area. The AVM has grown so large it effects to blood flow to the heart. The heart has to to work twice as hard to keep up. Thats why I have the right side heart failure.

  2. I have had many surgerys on the Avm. Now the doctor calls them procedures. Every time I am told it can never be completely removed, and will always come back. Doing a procedure helps with the pain, will never cure it. Because of the Avm I now have the right side heart failure and pulmonary arterial hypertention. The only way to cure the heart failure and PAH would be to get rid of the Avm. The Avm is from Cowden’s so every is connected. Hope that helped.

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