More About the Infection Fight - Little Green Caps and Lines in Your Blood Stream (PICC)

It seems I have opened up my Pandora's box of memories, and several things have come tumbling out. 

One of them is my fight for little green caps!!

I will share it here. I hope it helps someone.





I was in a hospital room in LA in February, and there they were. Little green caps! Not spending a lot of time in hospitals, most of us don't fully appreciate some of the things in that setting. I know I didn't. I learned though! Seeing those green caps again brought our life with PICC lines back to me.

When it was clear he would need ongoing administration of vancomycin to fight the infection in his blood and heart, we were told it could be done through a PICC line, at home. (PICC stands for Peripherally Inserted Central Catheter.)

I hated the thought of putting a long plastic tube into his arm and threading it up until the tip was near his heart. I believed he got the methicillin resistant staph epidermidis (MRSE) that way in the first place, through a line put into his blood stream. (Yes, I am finally writing the name, unmasking the monster that eventually killed him.)

For long term medicine delivery into the blood, there was no other way. And vancomycin has to go into the blood - it just cannot be taken by mouth. In addition, the blood levels of vancomycin need to be kept within a certain range in order to be effective. (That struggle is a story for another day!!)

The supplies were delivered by a pharmacy that specializes in PICC line drugs and the "equipment" that goes with it. They deliver directly to the home.

I learned about the little green caps from the first home health nurse we met. In the hospital, they are mandatory. However, what I found out is that the pharmacy may try to provide less than the best to you at home!!! It should not be allowed, especially when you are fighting a killer.

It is important to have a clean, sterile "tip" or port that you connect to when giving medicine, or any other reason the PICC is being accessed. After all, one is trying to fight germs, not introduce more!

In hospitals, they use the little green caps to keep the port sterile. At home, the pharmacy may try to just provide alcohol swabs - no doubt they are cheaper!

Can you believe it? Yes, maybe you can. Saying I was unhappy when I found this out would be an understatement.

I asked the nurse to just order the little green caps, and I remember distinctly what she said. "If I ask, they will tell me that the alcohol swab is sufficient. But if you call and ask, they will send it."

I called!

They had to make a special delivery, just for those green caps. I told them several times, whenever supplies were sent, that we must have the green caps. As I remember, they eventually realized I would not relent, and began automatically sending them.

Just so you know why hospitals use them, the difference they make is well proven:

Use of Disinfection Cap to Reduce Central-Line–Associated Bloodstream Infection and Blood Culture Contamination Among Hematology–Oncology Patients

Here is a page from 3M with information about them

If you are going home with a PICC line and there are unused little green caps in your hospital room, take them with you. You paid for them. And make sure the pharmacy sends them to you, every time.

Someone told me that these caps were invented by the parent of a child with infection. I have not been able to verify if that is the case or not. I am just grateful for them.

I call them "little" green caps. There really are no little things when it comes to infection. Everything matters in the fight for life.

As a reminder, these are my personal experiences and opinions, and not connected in any way to the  Bicuspid Aortic Foundation.

Best wishes to all who read this,

Arlys Velebir

Emergency Again!

A Lifelong Journey

The drive to this local hospital remains unchanged. It's ownership and name have changed with time, but we are very thankful that the small hospital nearest to us, where my husband was first hospitalized 27 years ago, is still there for us today. 

A beautiful natural setting, this hospital overlooks the Pacific. 

His first echocardiogram, later his first CT scan, were done here. We had no idea, so long ago, that important battles in my husband's fight to live would need to be fought here once again in 2017.

When we made the decision to have surgery once again at the end of February, our hope was to have a recovery similar to his other surgeries. Some things have been different with each surgery. 

No doubt the easiest and best recovery was in 2001, just 16 years ago now. We were admitted to the hospital on Memorial Day. This surgery removed his ascending aortic aneurysm, removing the danger of aortic dissection or rupture. He was strong, healthy and discharged on the third day after surgery. He healed well, and never looked back!

 Recovery from his first surgery, in 1990, and this last one have been the most difficult.
 Both times, he was in varying degrees of heart failure.

 His surgeon tells us his tissue is very fragile now. I truly hope that doctors will recognize the connective tissue aspects of those with BAV that genetics
 are beginning to reveal.
  It would help so much in understanding the whole person.

We repeat history, returning  to the same Emergency Room decades later.

Fever

After what we call the "kidney crisis" at the end of March, we returned home with hope in our hearts that the worst was behind us. After only about a week, he developed shoulder pain, which gradually became worse and reached the point where we were working on seeking help. Before that could happen, he spiked a fever!

Walking through the ER door once again, 27 years later, with a fever.

Fortunately, by this time we had met with a local physician who is very familiar with his heart issues and had arranged for him to take my husband as a patient. That day, we had an appointment just as the fever peaked. We were sent directly from his office to our local hospital, where the battle was fought.

The parking area also remains unchanged.

He was admitted to the hospital and started on powerful IV antibiotics.

I found comfort in the words of his doctor, "It may take some time, but we will get to the bottom of this."

Sepsis

He had been treated with powerful, IV antibiotics immediately that are known to be most effective, while waiting for blood culture results. Then one day we were told the something was growing in the blood cultures!

Sepsis is bacterial infection in the blood. The blood should be sterile, no bacteria should be there. It is to be especially feared in someone born with BAV or who has an artificial heart valve. They are magnets for bacteria!

I had horrifying visions of his new bovine valve, just two months old, being damaged by some vicious bacteria. If the bacteria should settle on his valve or tissue lining his heart, the infection would be called endocarditis. This should always be feared. They had told us this 27 years ago, with that first prosthetic valve. It was a known risk long ago for those born with BAV, long before there were antibiotics. It remains a danger today for native BAVs as well as artificial valves. What is worse, in today's world many antibiotics no longer work against bacteria. Infection can indeed be a deadly killer once again.

Echocardiogram - Is the New Aortic Valve All Right?

My husband had paid a high price already to receive a new aortic valve, first the surgery and recovery, followed by the kidney crisis. It was unbearable to think that the valve might be damaged and fail all over again.

When his doctor reviewed the first echocardiogram done at his bedside, it did not show the aortic valve clearly enough. The next day something very special happened at my husband's bedside. His cardiologist personally came, along with his echosonographer (who has become our dear friend, looking out for his heart for so many years). Together they persisted until his aortic valve was clearly seen.

I will never forget them, and what they did for us that day. Only the most dedicated, the most compassionate, do such things. I wish every person could receive that kind of care.

Initially it appeared that the new aortic valve might have developed a significant leak. I felt my own heart breaking. This was among the lowest points in our recent battles. In my moments alone, I cried over that bovine valve, still so new and possibly already damaged. It seemed too much, that he would lose the function of the valve he had braved so much to have.

After more review and discussion with his surgeon, it was decided that the new valve was not damaged after all. We could breathe again!

Final Results

At last the bacteria from the blood culture had developed well enough to determine what it was. He was to continue the IV antibiotic, a PICC line was inserted, and we were allowed to go home with assistance from home health!

As we returned home, it was to see this lovely planting, a reminder of endurance over many years.

This plant, a gift at the time of his first surgery,
faithfully blossoms year after year.
It is a gentle reminder
to keep hope
 in our hearts,
always!