Sunday, November 16, 2014

Discovery of an Aneurysm - Keeping Hope in Our Hearts

Our beloved African Grey Timneh parrot, "P.T."
Although my ancestry is from Africa, I was hatched in America, never knowing my bird parents. I was almost two before I met my human Mom and Dad. I had been returned to the same bird store that I left as a baby, when I went to live with a teenage girl and her family. Things just did not work out there. It was a disaster for me. The best thing that happened was when I was returned to the bird store. But I still had hope that one day I would find my forever family and go home with them. After all, stores are not places to live. So when Mom and Dad walked through the door one day, there I was! It was love at first sight. I am twenty years old now. Dad's first heart surgery was before I was even hatched, but I remember the time they found an aneurysm in his chest. I want to tell you from my own experience and my Dad's, keep hope in your heart always. Your dreams will come true.
                              - P. T. (Peter Timneh) Velebir

Hope is a thing with feathers
That perches in the soul
And sings the tune
Without the words
And never stops at all
                                      - Emily Dickinson


Aneurysm. It is just a word. Dictionaries tell us this word comes from the Greek, and means dilated or to dilate. For so many, including me, this word brings fear. When a blood vessel weakens and bulges, it is a condition to be respected and not to be ignored.Without treatment, it may create uncontrolled bleeding in the body if it tears or ruptures.

In my heart I remember a country cemetery, just outside a small town. Years before I met my husband, I said goodbye to a dear friend there. She was a young wife, the mother of a baby boy. Her life ended suddenly when a brain aneurysm ruptured and she was gone, snatched away in the midst of her happy, busy life. I have never forgotten her little boy, held in his father's arms, crying for his mother. He was far too young to understand what we as adults could scarcely comprehend. His beautiful, loving mother was gone, never to hold him, never to comfort him again.

For many years that is what aneurysm meant to me. It was a word tinged with icy terror and dread. A word without hope. A killer. So when I heard that my husband had an aneurysm in his chest, icy fear, real terror, gripped my heart. I didn't even know there could be aneurysms in the chest. 

Eleven years earlier, I had almost lost him to his heart valve complications. Now I thought I would lose him for sure. But not without a fight! Was there anything that could be done? If there was, we would do it, no matter where we might have to go to find help. 

Fear can be a paralyzing  heart sound. We must not be so frozen by fear that we could not focus, could not think. Yes, the seriousness of his aneurysm would motivate us to fight, but it must not paralyze us. We had to be able to focus.

Hope and Comfort

There is another heart sound that helped us through this difficult time. Hope. It dulled the fear, so we could focus on getting help.

 Carry hope with you always.
 Never let it go.

I want to tell you now that there is surgery that can successfully remove aortic aneurysms in the chest.  Looking back to that time, after coming through those two surgeries successfully, one for his valve and then for his aneurysm, we found that hope turned into joy, almost as though "a thing with feathers" took wing and soared within.

Perhaps while reading this, a feathered thing called hope will softly perch in the soul and sing to those who need it. May you have hope today and joy tomorrow.

In my heart I find that comfort is also a thing with feathers. If all hope had slipped away during or after those surgeries, I knew that somehow comfort would have come and gently perched where hope had been, just as sweetly as my beloved feathered baby perches on my hand. For some who read this, if it should be that the very best of surgery and medical care can no longer bring hope to you, may comfort gently wrap its soft wings around you.

Treated Just Like Other Valve Patients!

When my husband's BAV was replaced, he was sent home to heal and return to a normal life. There were no restrictions on his activity. He was told that he could do any exercise he wanted, including lifting heavy weights, which he had done all his life! And so he did.

Although he was born with an abnormal aortic valve, and his valve failed at a much younger age than the other, mostly elderly valve patients we saw at that time, he was treated just the same. In short, he was treated like everyone else, regardless of the reason why their heart valves had failed them. This is one-size-fits-all thinking. It is not good for someone born with BAV and their families.

Nothing was said to us about a finding noted in his medical reports called "post stenotic dilatation". Dilatation? Hmm. What was that Greek word again? 

For eleven years, we lived in ignorance that my husband's aorta was bulging in his chest. The bulging was gradually getting worse. He was taking coumadin (warfarin) to prevent blood clots forming on his valve. In an emergency, he would bleed more than normal. Ignorance is not a good thing.

Stumbling on an Aneurysm in His Chest

My husband did not have very many echocardiograms after his heart valve was replaced. One day the local internist, who had managed his blood levels over the years, suggested he come in for a visit in his office. He wrote out a prescription for an echo to check on his aortic valve, which seemed a good idea, even though this mechanical heart valve was supposed to be indestructible. 

His echo was done at the beginning of January, 2001. I remember a friend of ours asking about the results, and I told her we had not heard anything just yet but were not concerned. It was just routine.

There was one niggling thing bothering me. His blood pressure had been high in the internist's office. The doctor had not offered any medication, perhaps thinking it was just a one time occurrence. I believe today he should have known better. My husband's blood pressure was not just a little high - it was extreme. The "top" number or systolic was approaching 200, the "bottom" number or diastolic was over 100. 

But my husband didn't "feel" any differently, even with those high pressures. Shopping in a local store, I saw a home blood pressure monitor and bought it. These monitors were not that common then, and it stayed in the box, unused. I did not want to nag him about his blood pressure! We would see what the doctor said when we received the echo results.

Bad News Doesn't Always Travel Fast

It was three weeks before we heard anything about the echo results. Returning home from work, there was a message on the answering machine, telling us to call the doctor's office but not saying anything else. Not a good sign. When all was well, we were used to messages from the doctor telling us that. Now, he wanted to talk to us. Why?

On the phone, the internist said what he would not leave in a message. I still have the notes I made, the words I scribbled down that day. The aorta looked "a little dilated" above the valve. He did not use the word aneurysm. Perhaps he was afraid of that word too?

There had been no symptoms in his chest to indicate the presence of the aneurysm. Yes, we were shocked, but with time came to realize that since it was there, finding it was a good thing . We had an opportunity to deal with the aneurysm in a non-emergency setting, before it could rupture or tear.

A CT scan was scheduled at the local hospital. It confirmed the presence of the aneurysm, 5.2 cm in diameter, in his ascending aorta. There is nothing little about that size! The local internist had never followed up with us about my husband's blood pressure, never offered any medication to lower it. He just suggested that we contact the surgeon who had performed my husband's valve replacement surgery. From that time onward, I do not recall ever speaking to him again.

This was early 2001, and I turned to the internet in search of answers and help. I quickly learned that there was surgery for this. Basically the aneurysm was cut out, and a tube made of Dacron put in its place. Yes, there was something that could be done. No matter where we had to go to have surgery, we would do it. I expected we might have to travel far from home.

What Aren't Your Doctors Telling You? Get Your Medical Records and Find Out!

At this time, we became very disillusioned with our local physicians. We had trusted them with my husband's life. Now, he was on what is commonly called a "blood thinner", his aorta was bulging and could rupture in his chest, and he had also developed high blood pressure, which obviously was putting strain on that weak, bulging tissue. 

My husband was faithful in testing his blood to keep the anticoagulant levels within range. We were always on guard for infection, and he took antibiotics before any dental procedures. These were important things they told us. But nothing more. This is advice given to anyone with a mechanical prosthetic valve. Since he was supposedly "fixed for life", we believed that was all that would ever be necessary. It was not true.

No one had warned us. My husband had never known anyone with an aneurysm, but I had. I remember telling him not to lift those heavy weights out in the garage.

Yes, disillusioned may be putting it mildly. I thought that it was just our local physicians who didn't understand, especially when I learned online from medical papers that those born with BAV are prone to aneurysms in the ascending aorta. Later I would learn that these doctors were probably just like many other physicians. They had been taught that having BAV was really nothing of significant concern, and that "post stenotic dilatation" was quite harmless, especially after the BAV was replaced. I will write more about this separately. It is an example of how theory that is taken as fact endangers lives. While an idea may be attractive as an explanation, if it is not pursued carefully and thoughtfully questioned, it can be deadly.

In case you think it is different today, that your doctors are telling you everything,  I want to warn you. Just a few days ago, I spoke to a 33 year old man who lives in upstate New York. His doctors had known for years that he had a bicuspid aortic valve. They never told him. The week before we spoke, he had a burning sensation in his chest. He wondered why his doctor became so concerned, sending him to the local ER and insisting on a CT scan. He knows why now. They were afraid his aorta might be tearing in his chest. Today, he is educating himself. He is also looking for new doctors. Doctors that take an interest and are willing to learn along with their patients. Doctors that understand what is known and what still remains unknown about those with BAV. Doctors that will truly care for someone born with a bicuspid aortic valve. I sincerely wish him well in his search.

Fear and Your Three-Foot World

I am currently reading Mark Owen's new book, No Hero (1). I love it, because in each chapter he writes about a single topic, such as purpose, trust, and communication, using examples from his life as a Seal. There is no doubt Navy Seals need coping mechanisms as they go through so many extraordinary, life-threatening experiences. Those in BAV families may find themselves in tough situations also, and coping mechanisms help us through those hard times in our lives.

In chapter 4, he writes about fear. He describes the advice he was given by an instructor during a difficult rock climbing exercise (he has a fear of heights). Looking down and thinking about how far he would fall, looking across the horizon to a city in the distance . . . none of this would help him. He was told to focus on things within three feet of himself. And so he did, and he made it to the top!

Perhaps another way to say this comes from my mother's generation. She was descended from sturdy Norwegian pioneers who faced many challenges, and there was no going back to Norway!

  "By the yard, life is hard. By the inch, life's a cinch." 

Just stay focused on what you can do, step by step, to get through the crisis. You will find you can do a lot!

One day, I spoke to a woman with BAV who was symptomatic, fearful, and whose doctors were not listening to her. She was so discouraged she told me, she felt like giving up. I realized that she was seriously depressed. I tried to gently help her focus on what she could do, one step at a time. And I quoted my mother, encouraging her she could do this, one inch at a time.

None of us are powerless. If you or your loved one has just learned there is an aneurysm, it is all right to feel afraid. Just don't let the fear control you. Accurate information will give you hope, as you focus on what can be done, one step at a time.

Get your records and read them. Look up words you don't know. Ask your doctors questions. And if they are not helping you, find someone who will. 

You will be surprised what you can do in your three-foot world, one inch at a time.

You can save your own life!

With very best wishes to all,
Arlys Velebir

(1) No Hero, the Evolution of a Navy Seal by Mark Owen with Kevin Maurer, Dutton, 2014.