Speaking Up about BAV - Find Your Voice!

Red Jasper
The "warrior" stone

I spent many years, from 2001 onward, reading and questioning, devouring everything I could find about those born with bicuspid aortic valves.  Initially it was trying to understand how someone supposedly "fixed for life" by aortic valve replacement surgery 11 years earlier had somehow developed a large ascending aortic aneurysm.

The reading and questioning no doubt made a difference. I know we avoided some pitfalls. Others ensnared us, diminishing our quality of life.

Fluoroquinolone Warning
Today I am moved to write and encourage BAV individuals and families to find their voice and speak with their doctors about medications after reading the December 20, 2018 FDA warning about fluoroquinolone drugs. The following is from the announcement:

 "Health care professionals should avoid prescribing fluoroquinolone antibiotics to patients who have an aortic aneurysm or are at risk for an aortic aneurysm, such as patients with peripheral atherosclerotic vascular diseases, hypertension, certain genetic conditions such as Marfan syndrome and Ehlers-Danlos syndrome, and elderly patients.  Prescribe fluoroquinolones to these patients only when no other treatment options are available.  Advise all patients to seek immediate medical treatment for any symptoms associated with aortic aneurysm. "

The large population (1 in 50) of those with BAV, known to be vulnerable to aortic aneurysm in the chest, is not listed as one of the patient examples. This leaves something for us, the patient and family members, to do. We can speak up and mention it to our doctors.

From reading, I knew that the medical literature had begun to report on this class of drugs and the risk to the aorta. Two different times, with two different doctors, I told them about this and asked that an antibiotic from a different group of drugs be given to my husband. The doctors were not aware of the information in the literature, but they listened and found another option. This was well before there were any official warnings. I will always be glad we avoided any potential complications - he already had more than his share of issues without anything more.

Blood Pressure Medications
Recently letters have come from a pharmacy addressed to my late husband, warning of contamination of blood pressure medications he had been taking. He is still in the pharmacy database. I was aware of this long before those letters arrived and would have taken steps to protect him if he were still alive. 

Ultimately, I lost him to a raging infection in his heart. I cannot begin to tell you how much it still hurts. I can tell you that it would hurt even more if we had not done what we could all those years to protect him.

I often say that those with BAV are warriors. For those still in the battle, please read, ask questions, and speak up for yourselves. It could make all the difference in the quality and length of your life! 

With very best wishes

 for peace and joy 

this holiday season,

 and a safe, healthy 2019

~Arlys Velebir

Thanksgiving Morning - Heart Sounds of Love

A favorite picture of Peter Timneh!

This Thanksgiving Day morning, with the help of my sweet feathered child, I find there is a continuing story of love and thankfulness to share. These are the heart sounds of love between an African Grey parrot and his human Mom, that I have to share this Thanksgiving. 



The two of us have gone through some long, sad days and nights together in the last year, after parting with our beloved "Daddy Bird".

Today we are both thankful to be together, to be alive!

And we are thankful for everyone that make our lives so very special.

Another Fight to Live - The Unthinkable Has Happened!
The setting today in our home is a familiar one. There is very special medication in the refrigerator, which must be given properly and on time, twice a day. Medication that is fighting a terrible infection.
In November 2017 we lost the fight with infection - sepsis and endocarditis - that parted us from our beloved "Daddy Bird". There was no more need for medication, nurses, and so many things that were part of that fight.

This year, the medication is for my beloved forever child, and I am the nurse. He is, of course, the most beautiful, intelligent, African Grey Timneh ever hatched into this world! Above all, he is the most loving creature on earth!

Those who do not experience it may find it difficult to understand the beautiful bond between an African Grey parrot and his human family. I can only tell you that no one could love more intensely - it is impossible. Perhaps we can aspire to equal it. In the wild, the bond between these bird pairs, as well as the greater flock behaviors that enable them to live and thrive, must be truly magnificent.

Peter Timneh came to live with us when he was almost two. His first home had become a disaster, and it took a long time, years, to undo the damage and completely trust each other. African Greys are highly intelligent and intuitive. They are not cuddly creatures, but we found our way to a deep and enduring bond of respect and love. I remember how thrilled I was when he snuggled his head into my hand the first time.

Another Fight with Infection

State of the Art Avian Clinic
Dr. Larry Nemetz

There is an avian specialist in this area, one of the few in the country, Dr. Larry Nemetz. We had been to him once for help early on, but over the years all had seemed well. In late October, I called for an appointment for a check up, thinking something was a little off, but not serious. However, a few days later, I called urgently - something was terribly wrong! There had just been a cancellation!


I was not at all prepared for what the doctor told me. X-rays showed severe pneumonia in those little lungs. Yes, another fight with infection. I was deeply shocked. I managed not to faint. The first dose of medicine was given by the doctor. We managed to drive home safely!



Love and Medicine

The medicine is given by a syringe into his mouth. The doctor showed me how to do it, restraining him in a towel! I had never ever held my beloved baby that way, having read he would never forgive me for such a terrible violation of his person! In the early years, I believe this would have been the case.

Now, we had no choice. Twice a day, twelve hours apart, the drug must be given. How much did we love and trust?!

One night  his breathing was so labored, holding him in that towel, I feared he would die in my arms. It passed over and the medicine went in! His doctor has now told me that having survived more than two weeks from the diagnosis, he should do well.

We have learned together how to take this medicine because we discovered the secret - the most important part is love! Soft words of love and reassurance help us both be calm enough to take the medicine, despite that terrible towel! Then, once the medicine is down, the magic words "All Done" are said, the towel goes away, and the best reward of all, a kiss!

When birds are upset and emotional, they may bite out of fear. I do not suggest that anyone else do this with their feathered family member.

When I mentioned how we manage the medicine, the lovely woman who works at the Bird Clinic told me that most of the time she hears horror stories about trying to give parrots their medicine....  and so I know, we have a very special relationship.... I am comforted that he has a wonderful doctor, the medicine is working, and he loves me enough to forgive me for what I must do to him....

Parallels Between Parrots and BAVers

I have been struck about some parallels between my feathered family member

 and those with bicuspid aortic valves and thoracic aortic disease. 

Resigned to going back for a checkup!

Unintentionally, they both are very capable of "hiding" a serious condition until it is critical. Somehow their bodies compensate until they are right on the brink of disaster. I will not count just now the times that "suddenly" we fell off a cliff into crisis with BAV over the years.

My feathered child has a doctor who understands this. He has told me more than once that a) this had been coming on for awhile, but not visible to me b) symptoms and behavior cannot be used to guide the treatment - xrays and testing must be used to understand the true condition!  How I wish that more human physicians understood this about BAVers!

Fear in the doctor's office!
Visits to the doctor, even though he is very smart,
 understands what is wrong and is saving my life,
 are stressful!  BAVers can relate!

The popular understanding of how long they live is not accurate. I had been thinking that at 24, my sweet bird still has many years, perhaps double his age now, before him. His doctor is telling me that is not the case. At 24 my beloved parrot is already very vulnerable to health issues.  No doubt there are a number of reasons for this, including diet and a weakened immune system. As we extend the lives of BAVers, some of them may develop other vulnerabilities also. We need to understand so much more about them!

Safely home from my check up - get me inside fast!

One thing we can and are doing is improving his diet. This is a good idea for us all! It gives us every advantage when the time comes to fight a disease. He cannot have any fruit at all or anything with sugar due to the infection. And long term he needs to give up seeds and nuts for specially formulated pellets! He is not enjoying this, but at his recent checkup, he has gained 20 grams!



Heart Sounds of Love
Above all, those who seem so strong and healthy and actually have something wrong need extra special love in their lives! It is my greatest wish for all with BAV and TAD - that their loved ones walk beside them, every step of the way, no matter where it leads. I have no doubt it will lengthen their lives!

This Thanksgiving morning as I write this, he has chosen a soft perch with a cheerful view. The sun is shining after the rain. And there is thankfulness and love in our hearts, for each and every one who we are blessed to have in our lives.

There is much more recovery ahead;
 we know that love will get us through it!

Happy Thanksgiving with love,

Arlys and Peter Timneh

Broken Hearts this February - Remembering Bill Paxton and Those Who Grieve

Red Jasper
The Warriors' Stone

In February . . .

as children, we gave valentines to our classmates.

growing up, we learned about "Heart Month" - a time to focus on heart disease.

feeling invincible, we found our very own heart-mate, our one and only valentine.

later, we learned about BAVs and aneurysms, and wondered why we had never heard of it.

one went into the OR and the other waited as our heart-mate had open heart surgery.

some remained in the fight to overcome BAV and aneurysm.

And, in February, some lost their heart battle.

Yes, February is still about valentines, chocolate and flowers.
For some, it may be the month their hearts were saved.
And, for some, this month our hearts are broken.

Bill Paxton

We were almost ready to leave the hospital a year ago, following my husband's third aortic valve and fourth open heart surgery, when Bill Paxton's death became public. He should have had what all BAVers should have, a successful surgery, his first. What could have possibly gone wrong?

When someone with BAV is lost, we all lose. 

I did not know Bill Paxton, but there are things about him I know well. Like my husband he had rheumatic fever as a child. They also were both born with BAV and over time an aortic aneurysm developed. Like the majority with BAV, he was high energy and gifted, described here by co-star Mary Kay Place.

Video clips show him as the youthful picture of health, almost too perfect, that is typical of BAVers. Others may not notice this detail, seen in some BAVers, but in his smile I see the slight gap in his front teeth. My husband's gap was more pronounced.

If it hurts me to look at video clips of this vibrant man, what indescribable grief Bill Paxton's family must be living through now, the time of the one year anniversary of his surgery and then 11 days, one by one, until his death.

It is extremely painful to read the law suit just filed by his wife and children, grieving the loss of their husband and father. The words take us into a place of horror, with no escape for Bill and his family. 

The Right Hands, Not the Right Buildings

There is no time we are more vulnerable than when signing the papers, giving our hearts, our lives, into the hands of a surgeon and all the others involved. There are up to 100 "Does" listed in this lawsuit, their names unknown at this time. 

Having been through 4 open hearts with my husband, two of them in that hospital, I can easily picture the physical setting. How much of what is written in the lawsuit can be proven in a court of law? I do not know. I do know what is alleged is indescribably horrifying and tragic.

It reminds me of what I heard once - that buildings don't provide care, people do. The absolute greatest challenge for those with BAV is to find, not the right buildings, but the right people to undertand us, to save and extend our lives.

It is a challenge that my own family and other dear friends continue to face.

My February Memories

Memories may not comfort those who grieve at all. They haunt us. I have my own February memories, including two open heart surgeries in this month. We fought for about 8 months after that last February surgery before losing the battle. 

Others tell me the "firsts" are the hardest. I cannot tell you whether this is the case. It is too soon.

I can tell you that this is my first February without my husband, and I am among those with a broken heart. 

This February

may I rise beyond

 the grief and sadness,

and be

more understanding,

more empathetic,

and more caring.

                    ~ Arlys Velebir

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