I miss our walks together on the beach. It can never be again. Now I must find my path forward, alone. What should that path be?
In this second year, I am beginning to understand that I should face some of the things that happened to us during that last fight for his life.
Indirectly it was artificial heart valve issues, but directly, it was sepsis and endocarditis that took him from me. For so long I focused on heart valves and aneurysms. Then infectious demons tortured him and eventually took him from me.
Perhaps these reflections, still almost too painful for me, will lead me to my next step. No doubt, there is is still a fight to wage. Infection is a vicious killer. Surely, we can do better than what happened to him . . . .
Disclaimer: This is my personal blog, and in no way reflects the position of the Bicuspid Aortic Foundation.
Two years ago at this time, we were so happy together, thinking we were recovering successfully once again following open heart surgery - the fourth one. I remember it now as a blissful interlude, as serene as the beautiful Pacific on a calm day. Suddenly, it would explode into disaster.
Something is Terribly Wrong
Recovering at home after surgery, he began to feel a little off. I noted a rash on his face. I will not share all the details here, but it was the beginning of going into Septic Shock. Overnight, he got extremely ill. By the time I found an ambulance that would transport him back to the hospital where he had surgery, he was conscious but not much more. I sat at his head in the ambulance, thinking I might lose him on that endless journey on the freeway.
We made it to the hospital.
The ER doctor and nurses leaped into action. His kidneys were completely shut down, his body terribly acidic. When they unsuccessfully attempted to insert a central line, I heard his scream of pain through the walls to the far side of the ER waiting room where I sat. I have never seen such horrific suffering.
He was in septic shock, but it was never called that while he was there. They were unable to culture any bacteria from his blood. I remember one nurse telling me that "sepsis patients present like this". She was right.
Along with other things, he was treated with antibiotics as a precaution. Amazingly, his kidneys and general health recovered. Unappreciated, the vancomycin was key to his improvement. We went home again, still without any explanation.
Mercifully, later he had no memory of the worst of that episode. I remember. Over and over he told me, "I can't go on." I told him then that he did not need to go on, to fight anymore. I loved him too much to ask him to stay in that ravaged body. Slowly the suffering diminished. I am thankful we had more time, although it was at a very high price to him.
Finally, A Diagnosis
Returning home again, we arranged follow up care with an excellent, caring local doctor. First he developed terrible shoulder pain, the first sign of the resurgence of the infection, although we did not know it. In the doctor's office one afternoon, he had a soaring fever and the tremors we first had seen right after surgery. We were sent directly to the ER of our local hospital, where blood was drawn to culture, and he was admitted and again vancomycin was started.
Fire in his Blood, Fire in his Heart
This time, the blood cultures revealed an antibiotic-resistant bacteria. Vancoymcin was continued, to battle it again, this time knowing it was there. Yes there was a bacterial "fire" in his blood, coursing through his body, potentially contaminating and damaging everywhere it went.
Two years ago at this time, we were so happy together, thinking we were recovering successfully once again following open heart surgery - the fourth one. I remember it now as a blissful interlude, as serene as the beautiful Pacific on a calm day. Suddenly, it would explode into disaster.
Something is Terribly Wrong
Recovering at home after surgery, he began to feel a little off. I noted a rash on his face. I will not share all the details here, but it was the beginning of going into Septic Shock. Overnight, he got extremely ill. By the time I found an ambulance that would transport him back to the hospital where he had surgery, he was conscious but not much more. I sat at his head in the ambulance, thinking I might lose him on that endless journey on the freeway.
We made it to the hospital.
He was in septic shock, but it was never called that while he was there. They were unable to culture any bacteria from his blood. I remember one nurse telling me that "sepsis patients present like this". She was right.
Along with other things, he was treated with antibiotics as a precaution. Amazingly, his kidneys and general health recovered. Unappreciated, the vancomycin was key to his improvement. We went home again, still without any explanation.
Mercifully, later he had no memory of the worst of that episode. I remember. Over and over he told me, "I can't go on." I told him then that he did not need to go on, to fight anymore. I loved him too much to ask him to stay in that ravaged body. Slowly the suffering diminished. I am thankful we had more time, although it was at a very high price to him.
Finally, A Diagnosis
Returning home again, we arranged follow up care with an excellent, caring local doctor. First he developed terrible shoulder pain, the first sign of the resurgence of the infection, although we did not know it. In the doctor's office one afternoon, he had a soaring fever and the tremors we first had seen right after surgery. We were sent directly to the ER of our local hospital, where blood was drawn to culture, and he was admitted and again vancomycin was started.
Fire in his Blood, Fire in his Heart
This time, the blood cultures revealed an antibiotic-resistant bacteria. Vancoymcin was continued, to battle it again, this time knowing it was there. Yes there was a bacterial "fire" in his blood, coursing through his body, potentially contaminating and damaging everywhere it went.
The bacteria was methicillin resistant staphylococcus epidermidis, which is found on the skin.
This villainous bacteria is among those that do not fight fair, not at all. They are particularly attracted to artificial devices in the body. They secrete a kind of slime that is difficult for drugs to penetrate, and embed in the nooks and crannies that are hard to reach. His brand new bovine aortic valve was like a magnet to them.
They did an echo at his bedside in the hospital. When I heard that the new aortic valve showed some damage, I fled his hospital room to cry alone in anguish. A beautiful new bovine aortic valve which he had risked so much to have was being destroyed by infection. I had feared endocarditis all these years. Sometimes our fears do come true.
Why Call This Fire?
I refer to this infection as fire because of how destructive it is, and because of the tremendous inflammation it causes in the body.
Over time, even after the septic crisis, many immune markers in his blood were so high they were "off the charts". If he had lived, chronic joint pain would have remained with him, damage from that "hot" immune response within. This strong man began using a walker to steady himself when the stabbing pains in his low back and hips would strike.
Acquired at the Time of Surgery
The first hours and days after surgery had been difficult, but we did not know why. He told me later that he knew something was terribly wrong the moment he woke up. He felt instinctively he might not make it.
We noticed an involuntary tremor in his shoulder and arm that came and went. Why? Three prior open hearts had never been like this one.
In agony, in ICU he told me he wanted to go to heaven. So soon after successful surgery, I begged him to fight, to stay with me. We had love, prayer, special songs of praise and thankfulness to sing softly, and the comfort of scripture. Having those things, we had everything. It was the doctors who did not have everything they needed, to prevent, to understand, to treat.
After some rough days and nights in ICU, the suffering and tremors subsided. Unknown to anyone, it was the vancomycin given as a precaution following surgery that was working on the bacteria in his bloodstream. As it began to work, he improved. And so, we went home.
Yes, today, I know what happened. An antibiotic resistant bacteria had entered his blood stream at the time of his fourth heart surgery. When? It was present when he awoke in ICU. How? The infection was in his bloodstream, pointing to someone's actions introducing this deadly bacteria through one of the lines inserted directly into his bloodstream. From there it traveled the nutrient-rich super highway of his blood, causing trouble as it would, but particularly attracted to that beautiful new bovine aortic valve.
In ICU after surgery, the anesthesiologist came in and found something not to his liking with one of the lines. I remember the nurse resisting doing anything about it, using an excuse that the line would soon come out, but he insisted that it be corrected immediately.
Another nurse present made the comment to me that they were "learning something new" from the doctor. I recall that now with cynicism. After all, would they admit to me if they had done something less than properly sterile? Of course not.
Was that how the bacteria got into his blood? There is no way to know, to prove anything after the fact, but I do not forget. He entered the hospital with clean blood. He left with killer bacteria in his blood.
Fighting with Antibiotics - What Could Medicine Do?
After all this, another surgery to change the aortic valve and clean out the infection was too dangerous for him. The fourth surgery had been high risk in and of itself. At this stage in his journey, he would not survive another open heart.
Ultimately, over months we went to the local ER for admission a total of three times. There were PIC lines at home, nurses coming and going. Blood cultures that would be clean, and then later show the infection was present again.
Reviewing what happened, there was a pattern. After about 10 to 14 days without the antibiotics, the bacteria would take control to the point it was obvious, he was sick again. A full body scan showed the infection source was the aortic valve in his heart. The antibiotic had been able to destroy it every place else.
Medicine and Infectious Disease
I was shocked to read that vancomycin is a very old drug. It was the only thing that worked at all. It is the drug of last resort. What happens when and if it does not work either?
After starting with vancomycin, one infectious disease doctor tried a different drug, easier on the kidneys but with less success against the bacteria. How much time and ground was lost trying it, only to return to vancomycin?!
Finally, after he was admitted yet again for another PIC line to deliver further antibiotic treatment, suddenly in the afternoon his pulse dropped dramatically. The infection had "taken out" the AV node near his aortic valve. After that, the only reason he was alive at all was because of a "trickle" electrical impulse getting through to the left ventricle, telling it to squeeze. I thank God for that design, because it kept his heart beating long enough for him to return home for his last hours, his dearest wish.
Playing with Fire?
Endocarditis has been known to attack those born with BAV for a very long time (I love your published work so long ago, Dr. Abbott! I wish they would quote you more often!) . When surgery and artificial heart valves came along, endocarditis was recognized as a risk with artificial valves.
Today, there is a debate about whether or not antibiotics should be given when certain invasive procedures are done that may introduce bacteria into the blood stream. At one time, antibiotics were given to those with BAV. Currently the guidance is to use antibiotics only for those with artificial heart valves.
This greatly troubles me. I recently read this paper. Risk and outcomes of aortic valve endocarditis among patients with bicuspid and tricuspid aortic valves
From the paper, I have bolded some words (IE is infective endocarditis):
"This study does not provide guidance on the use of antibiotics in patients with BAV. However, we did observe a very high risk of IE in patients with BAV, thus establishing their potential value as a target population for randomised trials of prophylactic antibiotics in procedures prone to bacteraemia. The recent change in guidelines was largely motivated by the attempt to provide antibiotic prophylaxis to the highest-risk patients undergoing the highest-risk procedures. Although to this day, there is no randomised controlled study that tested the efficacy of antibiotic prophylaxis, BAV clearly increases the risk of IE in the otherwise healthy patient population. Our study suggests re-examination of congenital valvular heart disease among risk groups but does not provide any information regarding prophylactic administration of antibiotics prior to at-risk procedures. Patients with BAV should be encouraged to report symptoms of IE early to potentially reduce the risk of aortic root abscess. This study also highlights the risk of IE from intravenous drug use in patients with BAV."
What would I personally do if I had a bicuspid aortic valve? I would talk to my dentists and doctors, frankly and honestly, and ask for preventive antibiotics before procedures. I would never wish to "play with fire". I have seen the destruction, when infection does its worst. It is relentless, right to the last breath.
Infection and the Future
Are we doomed to return to the days when bacterial infections killed so many? Where is the next generation of drugs, that will defeat these aggressive bacteria? These are questions I ponder. Perhaps that is part of my path forward, focusing on those in search of the answers.
Until now it has been too painful for me to think about, to remember, these things. It hurts to face the reality that this deadly bacteria present on someone's skin killed him, as expressed by one of his doctors, "because someone didn't wash their hands." Perhaps writing this is the next step in my personal journey forward, advocating for those attacked by infections.
This villainous bacteria is among those that do not fight fair, not at all. They are particularly attracted to artificial devices in the body. They secrete a kind of slime that is difficult for drugs to penetrate, and embed in the nooks and crannies that are hard to reach. His brand new bovine aortic valve was like a magnet to them.
They did an echo at his bedside in the hospital. When I heard that the new aortic valve showed some damage, I fled his hospital room to cry alone in anguish. A beautiful new bovine aortic valve which he had risked so much to have was being destroyed by infection. I had feared endocarditis all these years. Sometimes our fears do come true.
Why Call This Fire?
I refer to this infection as fire because of how destructive it is, and because of the tremendous inflammation it causes in the body.
Over time, even after the septic crisis, many immune markers in his blood were so high they were "off the charts". If he had lived, chronic joint pain would have remained with him, damage from that "hot" immune response within. This strong man began using a walker to steady himself when the stabbing pains in his low back and hips would strike.
Acquired at the Time of Surgery
The first hours and days after surgery had been difficult, but we did not know why. He told me later that he knew something was terribly wrong the moment he woke up. He felt instinctively he might not make it.
We noticed an involuntary tremor in his shoulder and arm that came and went. Why? Three prior open hearts had never been like this one.
In agony, in ICU he told me he wanted to go to heaven. So soon after successful surgery, I begged him to fight, to stay with me. We had love, prayer, special songs of praise and thankfulness to sing softly, and the comfort of scripture. Having those things, we had everything. It was the doctors who did not have everything they needed, to prevent, to understand, to treat.
After some rough days and nights in ICU, the suffering and tremors subsided. Unknown to anyone, it was the vancomycin given as a precaution following surgery that was working on the bacteria in his bloodstream. As it began to work, he improved. And so, we went home.
Yes, today, I know what happened. An antibiotic resistant bacteria had entered his blood stream at the time of his fourth heart surgery. When? It was present when he awoke in ICU. How? The infection was in his bloodstream, pointing to someone's actions introducing this deadly bacteria through one of the lines inserted directly into his bloodstream. From there it traveled the nutrient-rich super highway of his blood, causing trouble as it would, but particularly attracted to that beautiful new bovine aortic valve.
In ICU after surgery, the anesthesiologist came in and found something not to his liking with one of the lines. I remember the nurse resisting doing anything about it, using an excuse that the line would soon come out, but he insisted that it be corrected immediately.
Another nurse present made the comment to me that they were "learning something new" from the doctor. I recall that now with cynicism. After all, would they admit to me if they had done something less than properly sterile? Of course not.
Was that how the bacteria got into his blood? There is no way to know, to prove anything after the fact, but I do not forget. He entered the hospital with clean blood. He left with killer bacteria in his blood.
Fighting with Antibiotics - What Could Medicine Do?
After all this, another surgery to change the aortic valve and clean out the infection was too dangerous for him. The fourth surgery had been high risk in and of itself. At this stage in his journey, he would not survive another open heart.
Ultimately, over months we went to the local ER for admission a total of three times. There were PIC lines at home, nurses coming and going. Blood cultures that would be clean, and then later show the infection was present again.
Reviewing what happened, there was a pattern. After about 10 to 14 days without the antibiotics, the bacteria would take control to the point it was obvious, he was sick again. A full body scan showed the infection source was the aortic valve in his heart. The antibiotic had been able to destroy it every place else.
Medicine and Infectious Disease
I was shocked to read that vancomycin is a very old drug. It was the only thing that worked at all. It is the drug of last resort. What happens when and if it does not work either?
After starting with vancomycin, one infectious disease doctor tried a different drug, easier on the kidneys but with less success against the bacteria. How much time and ground was lost trying it, only to return to vancomycin?!
Finally, after he was admitted yet again for another PIC line to deliver further antibiotic treatment, suddenly in the afternoon his pulse dropped dramatically. The infection had "taken out" the AV node near his aortic valve. After that, the only reason he was alive at all was because of a "trickle" electrical impulse getting through to the left ventricle, telling it to squeeze. I thank God for that design, because it kept his heart beating long enough for him to return home for his last hours, his dearest wish.
I still find it strange that on Monday morning, as we were arranging to take him home, an infectious disease doctor I had never seen came in and spoke of trying different drugs. Where had he been all this time? Hadn't he read the chart or spoken with our doctor first? Why put us through the anguish of that conversation? We had already made the decision to go home and cherish our last hours together. And that is what we did.
Playing with Fire?
Endocarditis has been known to attack those born with BAV for a very long time (I love your published work so long ago, Dr. Abbott! I wish they would quote you more often!) . When surgery and artificial heart valves came along, endocarditis was recognized as a risk with artificial valves.
Today, there is a debate about whether or not antibiotics should be given when certain invasive procedures are done that may introduce bacteria into the blood stream. At one time, antibiotics were given to those with BAV. Currently the guidance is to use antibiotics only for those with artificial heart valves.
This greatly troubles me. I recently read this paper. Risk and outcomes of aortic valve endocarditis among patients with bicuspid and tricuspid aortic valves
From the paper, I have bolded some words (IE is infective endocarditis):
"This study does not provide guidance on the use of antibiotics in patients with BAV. However, we did observe a very high risk of IE in patients with BAV, thus establishing their potential value as a target population for randomised trials of prophylactic antibiotics in procedures prone to bacteraemia. The recent change in guidelines was largely motivated by the attempt to provide antibiotic prophylaxis to the highest-risk patients undergoing the highest-risk procedures. Although to this day, there is no randomised controlled study that tested the efficacy of antibiotic prophylaxis, BAV clearly increases the risk of IE in the otherwise healthy patient population. Our study suggests re-examination of congenital valvular heart disease among risk groups but does not provide any information regarding prophylactic administration of antibiotics prior to at-risk procedures. Patients with BAV should be encouraged to report symptoms of IE early to potentially reduce the risk of aortic root abscess. This study also highlights the risk of IE from intravenous drug use in patients with BAV."
What would I personally do if I had a bicuspid aortic valve? I would talk to my dentists and doctors, frankly and honestly, and ask for preventive antibiotics before procedures. I would never wish to "play with fire". I have seen the destruction, when infection does its worst. It is relentless, right to the last breath.
Infection and the Future
Are we doomed to return to the days when bacterial infections killed so many? Where is the next generation of drugs, that will defeat these aggressive bacteria? These are questions I ponder. Perhaps that is part of my path forward, focusing on those in search of the answers.
 |
| Gazing at the Sunset |
Until now it has been too painful for me to think about, to remember, these things. It hurts to face the reality that this deadly bacteria present on someone's skin killed him, as expressed by one of his doctors, "because someone didn't wash their hands." Perhaps writing this is the next step in my personal journey forward, advocating for those attacked by infections.
Now, it is time for me to stop gazing at the sunset.
Just beyond the horizon is tomorrow, an opportunity to make a difference.
Originally posted in 2019, I have updated and republished this again on 04/05/2021.
Best wishes to all who read this,
Arlys Velebir
