I’m learning more about PH!


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.



  1. With Cowden’s Syndrome being such a “rare” disease – it always amazes me to hear of people from ALL OVER THE WORLD who have it too. Now, if I could only connect with someone who has gangliocytoma too. That would really buoy me up! I’m finding such a wealth of networking on Twitter too. 🙂

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