In late November 2011, my otherwise healthy 64-year-old husband thought he was having a heart attack with angina and extreme chest pressure making it difficult for him to breathe. He went to the ER room. Unfortunately, after 7 hours in the ER we had not seen a doctor and demanded to leave. The next morning we called his personal physician who got his ER records and told us to immediately schedule a cardiologist appointment. It took a week and a half to get in to see the cardiologist. The cardiologist scheduled a catheterization the very next day.

I knew things were not good when they came out of the catheterization room after 45 minutes when the procedure should have taken 2 or more hours, depending on findings. He had an 85% blockage of his left main artery going into his heart. This is what they call the “widow maker” along with four other blockages. He was scheduled for Coronary Artery Bypass Surgery a week later with strict instructions to go home and stay in bed for the next week.

His heart surgery went well, they did 4 bypasses. We were told he will be out of the hospital in 5-7 days. Typically, you are taken off the ventilator within 24 hours and moved to a regular cardiac bed. I believe he was given amiodarone intravenously the night after surgery; however, no one informed me at that time that he was having atrial fibrillation or that they had given him any treatment for it.

I am a very informed health care consumer, having worked as a medical transcriptionist for over 10 years and having been my mother’s health care advocate during many severe medical issues.

The day after surgery they were to extubate him but “numbers” on the ventilator were not typically quite what they wanted to see. Because of his extreme agitation, they did extubate him later on the day after surgery. However, his oxygen numbers remained lower than expected and so they kept in in the ICU. He continued to have breathing issues and so they put him on a BiPap machine while still in the ICU. By day 5 or so after surgery, he was becoming very agitatated and did not like the BiPap machine, so they took it off of him and just put him on regular oxygen…Despite these efforts his oxygenation was continuing to decline…I remember it was somewhere around day 6 or 7 that I noticed he had another bag of intravenous amiodarone. I asked about this and they told me he had some atrial fibrillation but nothing serious and it was quite common after this type of surgery. I knew nothing of this drug and didn’t look it up, deferring to the medical docs….My husbands respiratory problems continued and they discussed ventilating him, but my husband refused…so they continued to treat him with oxygen. They did every test imaginable to try to determine what was going on. His chest x-ray came back looking like it was “full of glass.” I was shown his presurgery x-rays, which were clear as a bell. They did a pulmonary lavage to try to figure out what was in his lungs and if it were some sort of pneumonia. All negative. They gave him antibiotics anyway. By day 10, he was in such respiratory distress the doctor looked at him and told him they needed to ventilate him. My husband refused. The doctor looked at my husband and said “are you ready to die today? Because if we do not ventilate you, that is what is going to happen.” My husband finally agreed to the ventilation.

He was ventilated…they called in the top respiratory therapist in the hospital, whom the nurses told me was “smarter than most the docs here.” He put my husband on a very particular ventilator protocol for a

condition they told me was “Acute Respiratory Distress Syndrome” or ARDS. They had to put him in a medically induced coma. One night when this therapist was in checking on my husband, a friend of mine and I started asking his questions about the condition ARDS. He was extremely informative and told us there is really no treatment for it but the ventilator and time. Either people get better or they don’t. When quizzing him about the causes of this condition, he brought up the drug amiodarone. I started doing a little research but not extremely thorough as I had trouble getting internet access at the hospital. When asking the doctors about this drug causing the condition, they all “poo-poo’d” it, telling me that he never received enough of this drug to have induced lung toxicity. They said they were all stumped and could not figure out why this had happened. They had absolutely no idea and would not even concede to the idea that it was the amiodarone yet every other cause had been eliminated. When talking to the respiratory therapist another night about this drug, he indicated to us that he HAD read studies where even a small amount of amiodarone had caused acute respiratory distress syndrome. He also informed us about the long half-life in the body and said that he believed it would be at least 45 days or more before this drug would possibly be out of my husband’s body.

Every day I sat there for 12-15 hours watching him, watching that machine, watching the numbers, hoping that when I came in the next day they had been able to begin weaning him off…..He was so very sick, I called our family to come in from other parts of the country as there was really no way to know if he was going to survive….All I was told was “there should be no reason why we can’t get him through this.”

Around day 11—12, he finally was able to be extubated again. I was so happy, thinking we had come through the worst….but within 5 days he began to go into extreme respiratory distress again and had to be emergently intubated. I was devastated.

Prior to this it had been an incredibly difficult week with panic attacks, ICU psychosis, and then, of course, re-intubation…At this point, he had been in ICU for almost a month. It was finally discussed with me that they could not leave him orally intubated much longer and that we would need to do a tracheostomy. I consented and 1 month from initially surgery, he was taken back to the operating room for a tracheostomy.

Fortunately we were at a hospital where the care (except for being given this toxic drug) was amazing. He had a nurse1 on 1 at all times.

The tracheostomy was the best thing as he did not need to be in the medically induced coma and my husband was starting to show through….It is amazing how big the little things were….I will never forget the day they actually got him out of bed and into a chair…..despite still being on the ventilator and having four or five IVs in him….it was like a baby taking his first step.

Almost as if on cue, it was somewhere around day 45 or 50 when his lungs did start to recover and he was able to start being weaned from the ventilator….usually being off during the day and on at night….this weaning process took another two weeks or so…he was being tube fed and could not sit up or walk. He looked like a concentration camp victim having lost nearly 50 pounds and had extreme muscle atrophy. He looked like he was 90 years old. You have to realize that my husband was a national

body building champion at age 46 and when he went into the hospital at age 64, he was still a very strong and muscular man. I believe had he not been so strong and have so much muscle mass for his age, he would not have survived. We were told that 70% of people as sick as he was do not make it.

He was in the ICU for somewhere around 65 days and then was transferred straight to an acute rehabilitation facility for yet another month. He could not sit up by himself, he could not walk, he could not swallow. His time in the rehab facility was every day full of physical therapy to walk again, occupational therapy to relearn how to take care of himself with shaving, going to the bathroom, showering, dressing, and speech/swallow therapy to be able to eat again….He actually had to go through a treatment where he had an electrical stimulation collar put around his neck for the electrical impulses to help exercise and stimulate his throat muscle so that he could eat food again. This was an amazing frustrating process for him. He was hungry and wanted to eat!!

We went to the hospital on December 20. We left the ICU on February 16 or so and we left the rehab facility in mid-March.

Once home, he was still walking with a walker and did not have much ability to care for himself. We had six weeks of in home nursing, in home occupational therapy and in home physical therapy. Luckily, he is a very competitive guy and he worked hard and was able to be strong enough for me to take him to outpatient therapy in about six weeks. We did another six months of outpatient therapy three times a week with walking up to 1 mile daily.

The day we left the hospital, they called him “the save of the year.”

Today, he is doing pretty well; however, he still does not have much stamina or endurance to walk far. He often has to take naps during the day. And he still has some muscle problems in his legs….

I lost my job to be with him. Neither of us worked for 1-1/2 years, and the medical bills for this were almost 2 million dollars….thank god we had insurance but our portion is still significant to us given the lack of income for so long.

I have what I believe is post-traumatic stress disorder from this. While the toll on him was physically, the toll on me was mentally. I had to become his protector in the hospital. I was there during rounds to talk to and challenge the doctors and nurses….I had a hard time going home to sleep at night….when he did get home, I could not leave his side for very long without experiencing anxiety…as if something would happen to him if I was not there. I still have trouble talking about this without getting emotional…..

All of this devastation due some “common” atrial fibrillation after a heart surgery and then giving a “last resort only” drug as a first line of defense without trying any other medications first.

I know and thank God every day that we were one of the lucky ones, that his life was spared and that we can continue our journey together.

I am so angry that this drug is being used so casually and that patients all over the world are not being given informed consent….many are not given the chance to say no, like my husband. Others, are not being warned properly about how toxic and dangerous this drug is.

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