In November of 2009, my Dad had a new ICD implanted because the battery was going out in his old one. They “upgraded” him to a dual chamber model and he did well with it until June of 2010 when his a fib returned and was relentless. In September of 2010, my Dad had a cardioversion done and it seemed to be successful. He had color back in his cheeks and had a little more energy. But less than a week later he was back in a fib again, so he scheduled an appointment with his cardiology team. I would usually try and go to these appointments with him, but this time there was a cancellation and I wasn’t able to go. When he got home he called me and told me how it went and that they were going to try him on a new medication to try and control the a fib. He couldn’t remember the name of it (they had called it in to the pharmacy directly) but he did say that it could have some bad side effects and that they would be monitoring his blood work closely and they had scheduled him for pulmonary function testing in two weeks. The day after his appointment he came over to my house and wanted me to ride along with him as he ran some errands. It was then that he told me he had been put on Amiodarone. One of his errands that day was to stop at the heart center and have some blood work done. While he was in doing that, I sat in the car and started researching the medication as I did with everything he was given. I was horrified to read all the stories of loss by so many families because of this drug! As soon as he got back in the car I told him I didn’t think it would be a good idea for him to take this medication. He kind of laughed and said, “yeah, it’s pretty bad, huh?” He said they had told him all of the problems this medication could cause and that they would be monitoring him very closely. He trusted his cardiology team and started taking Amiodarone on October 1st.
On October 5th, early in the morning I got a text from my Dad asking me to call him if I was up. I called him and he told me that he lost his balance going into the house that morning and fell off of the steps flat on his right side on the concrete driveway. He was in a tremendous amount of pain and said he wouldn’t be able to go to our scheduled appointment at the pain clinic that morning because he could hardly even walk. My Mom was going to work and I couldn’t leave him there by himself, so I went over and told him he needed to go to the ER and have some x-rays done to make sure he didn’t break anything. I ended up having to call an ambulance to come and get him because I couldn’t get him up the stairs from the basement. Once at the hospital they did x-rays and said nothing appeared to be broken, but they wanted to do a CT just to make sure. It turned out that he did have a small fracture in his hip, but luckily he didn’t need surgery. However, the internal medicine doc that saw him said he saw something in his lung on the CT, and that he wasn’t sure if it was a contusion from the fall or if it was the start of pneumonia, so he ordered antibiotics. I informed the doctor that Dad had started taking Amiodarone. He basically brushed it aside and didn’t think it was an issue. Dad was admitted and moved to a room on the 2nd floor of the hospital. He was usually placed on the cardiac floor when admitted because he had five heart attacks, congestive heart failure and the a fib, so I was concerned about the level of care he would be receiving, and as it turned out I had a right to be!! The second day he was in he started to run a fever and they just threw tylenol at him to bring the fever down. I thought it was odd he was running a fever being that they had put him on an antibiotic. By the third day he was in he was still running a fever and I was noticing changes in his behavior. He was very rude and belligerent with the staff and he was off in “la-la land” as I called it. He would start talking and fall asleep mid-sentence and forget what he was talking about. He would seem to stare right through you when you were talking to him and he was very slow to respond to questions or commands. This was not like my Dad at all. He was always very laid back and would joke with his doctors and nurses despite the pain he was in. When the nurse came in his room and started going through the list of meds he was on, she named the antibiotic the internal medicine doctor had ordered. It was on his list of home medications, so I told the nurse he wasn’t on anything like that at home, but that an antibiotic had been ordered when he was down in the ER. She was just going to take it off his list! I asked her to look and see who ordered it and when. Then she realized it was a new order that she should have been giving him for the last three days and hadn’t been!! Her response was, whoops! I guess we missed that one! I was furious. When I got to the hospital the next day, Dad was even worse. He was still running the fever and was totally incoherent. I talked to the nurse and the doctor and told them both that something wasn’t right. I brought up the Amiodarone again, and the nurse even printed out the information on it so I could review the list of side effects. When I talked to the doctor, she said he needed to stay on the antibiotic and that his behavior was probably a result of being over medicated with his pain meds. I asked her if his blood work supported this diagnosis of pneumonia and she said it did. Dad spent two more days in the hospital with no improvement. When I went up to visit him on the 9th, I found a bloody kleenex on the table. I asked my Dad where that came from and he said he had been coughing up blood for the last two days! I asked him if he told the nurse and doctor and he said that he did, but they weren’t all that concerned by it. A little bit later his nurse came in and asked him if he wanted to go home. She said they weren’t doing anything for him medically that he couldn’t do at home. Well, of course he said yes! Who wants to stay in the hospital?! The nurse must have said at least three or four times that she wasn’t trying to kick him out, but she just didn’t feel there was any reason for him to stay in. While we were waiting for his discharge paperwork, the next nurse coming on asked if we were going home. I told her we were, and she said ok then, I won’t bother to do any vitals since you are leaving. The other nurse came back with the discharge paperwork, so I brought him home. I got him into the house and in the kitchen, and that’s as far as we made it. I sat him down in a chair to rest. He was completely out of it. He was just staring out into space and couldn’t understand what I was saying to him. My Mom came home and when she touched his face she said he was burning up! I took his temp and it was 102.5! I looked at my Mom and told her he needed to go back. I have no idea how we did it, but we managed to get him back in the car and back up to the ER we went.
I explained what was going on to the ER doctor and again expressed my concern about the Amiodarone. Once again, my concerns were ignored. They did new CT scans that showed infiltrates in both lungs now and the scan was much worse compared to the previous scan just four days earlier on the 5th. The doctor still believed it was pneumonia and started him back up on IV antibiotics and put him on oxygen because his sats were down in the 80’s. He was admitted once again and sent up to the cardiac floor.
By the 10th Dad was coughing up mass amounts of blood and was really starting to have a hard time breathing. I showed him the information the nurse had printed out a few days earlier and told him he needed to stop taking the Amiodarone. He agreed and refused it the next time the nurse tried to give it to him. Later that day his cardiologist came up and talked to him and told him that there was no way he could be having a reaction to the Amiodarone that quickly. He said that everything else looked fine and that he should stay on the medication. Again, my Dad trusting his cardiologist went along with his suggestion and started taking it again. With each passing day he was coughing up more blood and having a harder time breathing. Finally on the 15th, after being on antibiotics for 8 days with no improvement and x-rays that kept looking worse, my Dad agreed with me and refused the Amiodarone for good. Wouldn’t you know it…. the fever and cognitive impairment disappeared the day after he quit taking it!! Unfortunately, the damage was already done. They scheduled a bronchoscopy and diagnosed him with acute alveolar hemorrhage. He was started on steroids and by this point he was on high flow oxygen, completely maxed out and was still struggling to breathe and keep his sats above 90.
On October 18th my Dad called me around noon and said that his doctor had approved a visit from his little sweetheart, his kitty BJ. After 14 days in the hospital he was really missing her, but he said “don’t bring her up today…. I just got back from having another CT and I’m just too exhausted.” So I told him that was ok….. I’d bring BJ up tomorrow. About an hour later my phone rang again as I was getting ready to leave for the hospital. It was Dad again, and I thought maybe he had changed his mind about BJ. Boy was I wrong!! My Dad said his CT was really bad and asked me to call my Mom and have both of us get up there ASAP because we had some decisions to make. When we got up there my Dad was sitting on the edge of his bed struggling to breathe. He told us that the pulmonologist would be in soon to explain everything. He said to my Mom, “you know what to do.” A few years prior my Dad filled out a healthcare directive stating that if he should code, shock him once to try and get him back, if it didn’t work, let him go. He told me to make sure I took care of my Mom, and then he grabbed both of our hands and prayed for US!! Despite all he was going through, he was still more worried about us than himself. That was my Dad. The pulmonologist came in the room along with a cardiothoracic surgeon. They wanted to do an open lung biopsy immediately and then put him in the ICU on a ventilator for a while. He explained how risky it was and that Dad could die during the biopsy or he may not be able to come off the ventilator. At this point it was either do the biopsy or do nothing and watch him die. We all agreed on the biopsy. I don’t think we even had five minutes with him after that before they were there to take him to surgery. I told him how much I loved him and gave him a kiss and then he was gone. We watched the monitor in the waiting room closely…. waiting for it to show he was out of surgery and up in the ICU. As soon as it did, we headed upstairs. As we got to the desk I could see my Dad in the room across from us. The doctor was by his bed on the phone and staring at the telemetry, and a nurse was manually ventilating him. I got a little nervous, but the nurse said they were getting him settled still and that we should go to the waiting room until they were done. Well, come to find out after reading his medical records I had requested, he was dying!! And they told us nothing about it!! They did get him stabilized and we eventually were able to see him. It was so hard to see him on that ventilator. My poor Dad had already been through so much pain and suffering in his life. It just wasn’t fair. He was on the ventilator for three days. The first biopsy result came in and the pulmonologist seemed almost overjoyed to tell us my Dad had ARDS. I said, yeah…. brought on by the Amiodarone, right? Well, he didn’t want to admit that of course! He said he would continue the steroids and that he wanted to take him off the ventilator the following day and wake him up. The next morning my Mom and I were at the hospital bright and early. We each grabbed one of his hands and talked him through the extubation. He was pretty groggy for the next couple of days, but he seemed to be holding his own. Then everything went downhill again. He was still coughing up blood like crazy, he had a ton of drainage from his chest tube and he couldn’t keep his sats up. His blood sugar had skyrocketed – he never had diabetes or any blood sugar problems before – and he started complaining that he couldn’t see well. Everything was blurry even with his glasses on. I was getting so irritated with the care he was getting that I had him sign a release of information form so I could get his records. This was the 26th of October. I came back up to his room after I got them and he told me, “go get ‘em hun!” I said, I will Dad!! Mom and I helped him eat his lunch, and then we left for a little bit to go home and get BJ for a visit. He was really wanting to see her. We got back to the hospital about 5:00 and stayed until 9:30. Dad was so happy to see BJ and she stayed right by his side the whole time we were there. She wouldn’t budge for nothing!! We got ready to leave and I asked my Dad if he wanted me to bring BJ back with me again the next day. He said no….. he wasn’t going to see her again. I told him that if he changed his mind to call me and I would bring her with. I told him I loved him and gave him a few kisses and hugs….. told him again how much I loved him and then we left. A little over an hour later, 11:18pm, my phone rang. It was a nursing supervisor from the hospital….. the call I had dreaded my whole entire life. She said my Dad’s condition had drastically changed, he was in cardiac arrest and they were doing CPR. Come now! I was out the door before I even got off the phone with her. I called my Mom on my way and told her to come…. I am only about three miles from the hospital. I got up to the third floor and the supervisor was there waiting for me. I said, he’s gone, isn’t he? She shook her head…. yes. My Dad, my best friend…. my miracle man was gone. He was only 65 years old.
It took Amiodarone not even 5 days to damage my Dad’s lungs so badly that he died. This drug is so horrible and toxic…. it should not be given to anyone!! My Dad suffered so much as a result of this drug, it just breaks my heart. No one should have to suffer like he did. In loving memory of my Dad, Douglas G. Patrias, August 3, 1945 – October 26, 2010.