This picture was taken of me and my dad in November 2014 – just a couple days before I left to meet with Dr. Natale for my initial consultation for my ablation. He looked pretty good in this picture but I had no idea how sick he really was.
He would be admitted to the ICU on Saturday morning, June 27, 2015, and would die the following Sunday evening. He would have total right side heart failure, liver failure, kidney failure, and would contract a blood infection that would lead to septic shock.
These things obviously don’t happen within a span of 36 hours (with the exception of septic shock) so obviously something had been brewing for months. In this very long post, I try to piece together the final months of my dad’s life to determine what ultimately caused his death.
My Dad’s Afib History
My dad was officially diagnosed with afib about 2-3 years before me. It would have been in 2003 or 2004. He was in his late forties. He was sitting on the couch at home and his heart took off. Like most first-time afibbers, he thought he was having a heart attack so he had my mom call 911.
When the ambulance arrived his heart rate was hitting 250 beats a minute at times. The paramedics defibrillated my dad right on the couch. My dad said they used about 200 joules on him. He said it was the most painful thing he had ever experienced. In his own words, “I wouldn’t wish that on my worst enemy!”
My dad would have a second cardioversion a year or two later in the hospital. That time it was under sedation so he didn’t have any pain at all. At the time of his second cardioversion I was on my first or second one myself.
We used to always joke about our cardioversions. As soon as I’d have one done I’d call him and he’d ask me how many joules I was hit with. I’d say 200 joules and he’d reply, “Pussy. I took 300 joules on mine.” I got the last laughs because in the end I had a total of four cardioversions and he only had two. Who was the pussy now, dad?
At one point we even talked about having T-shirts created making fun of the cardioversions we were “always” having. That was the kind of relationship I had with my dad. We were truly best friends and we joked around about everything – even getting shocked!
Unfortunately for my dad, he didn’t take his atrial fibrillation and his heart health as serious as I did. While I became obsessed with wanting to know anything and everything I could about afib and doing everything I could to cure it or at least prevent it, my dad either didn’t care, didn’t think it was a big deal, or simply chose to bury his head in the sand and not deal with it.
I honestly don’t know what my dad thought about all of it because he never talked about it – despite my best efforts to get him to open up about it. It’s interesting because my dad was always an open book. You could ask him anything or discuss any topic with him – except his health. He didn’t want anything to do with it. He would literally get annoyed and angry if you tried to talk about his health with him. It drove me nuts how guarded he was about his health.
When my dad was first diagnosed with afib he saw a general doctor in the small town of Little Falls, MN where he lived. I’m not even sure he saw a cardiologist at the time. The doctor put him on a daily beta blocker (metoprolol) and sent him on his way.
That protocol, for the most part, worked great for a number of years. I say, “for the most part,” because he still had afib on and off on a regular basis. He had silent afib so he never felt any symptoms. The most important thing for my dad was that he didn’t have any tachycardia events that required a cardioversion. The beta blocker kept things quiet and he was able to live a perfectly normal life for about a decade.
What Lurks Beneath (Can Kill You)
While things seemed quiet and “good” on the outside, things were slowly falling apart in the inside. This is the danger of relying solely on drugs to treat afib. Drugs primarily treat or simply mask the symptoms of afib. They don’t do anything else. So while my dad felt great and thought everything was fine, his heart was getting worse with every passing year.
In 2014 the wheels started falling off of the bus for my dad. At some point in the early months of 2014 (could have been the latter part of 2013 too – I can’t recall exactly) he started experiencing fluid retention, which is called edema. He went to the doctor. This may have been the same doctor he worked with when he was first diagnosed with afib years ago but I’m not sure. This doctor was a Doctor of Internal Medicine, which is certainly better than a general doctor but still isn’t a cardiologist or an EP.
The doctor ultimately prescribed Lasix and added Digoxin to the list. He also told my dad that he had cirrhosis of the liver and should probably stop drinking. This was a huge blow to my dad and me. If you’re a regular reader of this blog, you know I have a history of being a regular drinker myself. My cocktail of choice is vodka/7 up.
Let’s just say my dad and I shared many many cocktails and conversations over the years so when he had to quit drinking, things were different. Many of the things we enjoyed doing together we could no longer do (i.e. going to the bar together, having cocktails together on the golf course, staying up until 2 a.m. having cocktails and conversations, etc.).
When he was told he couldn’t drink anymore, he took it in stride. That was always the amazing thing about my dad. When he made up his mind to do something, he just did it. Twenty years earlier he woke up one morning and just decided to stop smoking – never mind he had been a 3-pack-a-day smoker since he was in high school. He just made the decision to stop and he did. He had amazing will power.
Quitting drinking wasn’t hard for him to do at all but I could tell he was irritated about it. Like me, he enjoyed his cocktails so taking that part out of his life wasn’t fun for him. I could tell because when we’d get together he wasn’t totally himself. He was quieter and more reserved and he just looked like he was annoyed.
When the doctor told my dad he had cirrhosis, we all assumed (perhaps the doctor as well) it was because of his drinking. We’d later find out that wasn’t the case at all. Regardless, my dad quit drinking after that appointment with a couple exceptions. He had a total of two beers with me a couple times when we got together.
The Lasix he was prescribed worked beautifully. My dad lost over 55 pounds (all water weight of course) within a week. It was crazy. I still remember how proud my dad was of losing all that weight. He was on top of the world. And I have to admit, he looked really good.
It was no secret, my dad was overweight and was probably considered obese. He was 61 years old and about 260 pounds at a height of 5’11”. After the Lasix he was down to around 205 pounds. That was probably the lightest my dad had been in years.
After my dad lost all the weight he stopped taking the Lasix and life was back to normal – or so it seemed. This is where the mystery begins. If I had that much fluid retention and I lost 55 pounds of fluid weight in a week, I’d have all kinds of questions for my doctor. Most importantly, I’d want to know why I was retaining so much fluid to begin with.
I asked my dad a couple times why he was retaining fluid and he never had an answer. He clearly never asked the doctor himself or the doctor told him and my dad didn’t like what he heard so he just buried his head in the sand.
Either way, none of us knew why dad was retaining so much fluid. Obviously something was wrong. I always speculated it was the afib and/or the beta blocker he was on. That turned out not to be the case but I was close. While it wasn’t the afib or the drugs, it was something with his heart.
I would also want to know more about the cirrhosis. I told my dad a couple times to go to a specialist to get more information about it. Specifically, how much damage was there to the liver. This needed to be explored more but dad wouldn’t listen. I’m sure he thought it was from his years of drinking so what was the point of doing any kind of follow up. He’d pay dearly for that assumption because his liver damage had more to do with his heart than his drinking.
I also warned him about digoxin. I told him that based on my research, this is not a drug to take lightly. More to the point, it’s not a drug you should take unless you absolutely need to. He said he would ask his doctor about it but of course he never did – nor did he stop taking it.
In the fall of 2014 he started having edema again. This time it wasn’t as bad as before but he was definitely experiencing “slight” swelling throughout his body but mainly in his legs, ankles, and feet. He went in for an appointment on 10/15/14 – again seeing the Doctor of Internal Medicine (not a cardiologist or an EP). I found a copy of his medical chart from this appointment in his stack of papers on his desk. Here was his diagnosis:
Your diagnosis from today’s visit:
- A-fib (primary)
- Edema of extremities
And here was his “active problem list” on the same chart:
- TR (tricuspid regurgitation)
- Cirrhosis of the liver without mention of alcohol
- Other abnormal blood chemistry
- Hypertrophy of prostate without urinary obstruction and other lower urinary tract symptoms (LUTS)
At what point do the alarm bells start ringing? You’ll note the first four items on the “active problem list,” – afib, tricuspid regurgitation, cirrhosis of the liver without mention of alcohol, and other ABNORMAL blood chemistry. The word, “active,” means these are things that have been going on. Why weren’t any of these addressed?
This is the real mystery. Either my dad received such poor care that no doctor he saw bothered to tell him how sick he was, or they did and my dad just ignored them. My guess is it was a little bit of both. I think he received poor care and my dad was either too scared to deal with these issues or they were too much for him to wrap his head around so he just didn’t do anything about them. Either way, it’s a tragedy because there is a good chance he would be with us today if he would have tackled them head on.
My dad was so secretive about his health that even my mom was clueless. He wouldn’t talk to her about anything regarding his health and he wouldn’t share anything with her. When my mom would press him on his health issues he would literally get mad and yell at her. He wouldn’t say a word to anyone about his health.
It’s also important to note here that my dad put on a very good face. Despite how sick he really was, you would never know it. He was the same old dad – always talking, always telling stories and jokes, and ALWAYS laughing and smiling. He never complained and he never bitched and moaned about his health issues. Because of this, everyone around him assumed he was “o.k.” Sure he had some health issues but certainly if he had any serious health problems he’d tell us.
After that appointment the doctor apparently increased his Lasix dosage but it never really worked. He never lost any fluid and the edema very slowly got worse and worse over the coming months.
When I saw him this past Christmas he looked like the walking dead. I had never seen him look so sick before. All of us in the family agreed he didn’t look well. My mom tried to get answers from him and she tried to urge him to get help but he wouldn’t have anything to do with it.
I finally had enough of his stubbornness so I sent him this email in March of 2015 – just a few days before my ablation:
(click on the images to read the emails)
Here was his reply to my email:
His reply was promising and I honestly thought he took my email to heart (no pun intended) but as it turned out, he ignored everything I told him. He didn’t do anything he said he would do and we never talked about it again.
Between January 2015 and the time of his death, his health would quickly deteriorate unbeknownst to anyone (and maybe even dad himself). His edema would get worse and when he was admitted to the ICU Saturday morning, June 27, 2015, he would have total right side heart failure, liver failure, kidney failure, and would ultimately contract a blood infection and go into septic shock.
“Pulling the Plug” and Letting Dad Die
WARNING: This gets somewhat graphic but I have to tell the story so there is a record of this. It’s also therapeutic for me to get this on paper.
I had to put a dog down once and I thought that would be the hardest thing I would ever endure in my life. I still remember that day like it was yesterday. One minute I had this happy go-lucky dog in my arms and the next minute she was dead in my arms. I had just put my best friend to sleep and she had no idea it was coming. That would be nothing compared to what my mom, and my brother and I would have to face.
My mom called me that Saturday morning that dad was in the ICU. Our family was at our daughter’s softball tournament about an hour and fifteen minutes away from the hospital where my dad was admitted. When I got the news I didn’t comprehend the seriousness of the situation. The letters, “I-C-U,” should have been a dead give away but I suppose I went into a sort of normalcy bias. In fact, my response was I told my mom to keep me posted. It didn’t even dawn on me that I should get my ass to the hospital asap!
As soon as I told my wife, she said I had to get up there NOW! Much to my wife’s shagrin, I decided to stay and watch one more of my daughter’s games before leaving. The gravity of the situation still hadn’t sunk in. I arrived at the hospital about five hours after my mom called me earlier in the day to tell me dad was in the ICU. When I got there dad’s last words were, “that’s my son, Travis.”
This was his response to the nurse asking him if he knew who I was. Dad was in so much pain and so “out of it” that I guess they wanted to test his state of mind. Dad recognized me immediately but aside from those last words, he didn’t make any attempt to talk to me or give me any positive sign that he was glad to see me.
He was just in so much pain and clearly beyond miserable. I felt so bad for him but I kept thinking to myself, “How the hell did it come to this? He had to have known he was sick. This doesn’t happen overnight. Why didn’t he say anything to anyone?”
Within an hour of my arrival, the doctor recommended we put a breathing tube in him and sedate him to relieve him of his pain. After seeing all the suffering he was going through, the decision was a no-brainer. We agreed to the breathing tube and the sedation. Dad would never speak again and from that moment on the drugs would kick in and he’d be in a “zombie state” until his death.
The ICU doctor told us more than once that of all 15 patients in the ICU that day, dad was the sickest. As he kept repeating, “your dad is a very sick man.” This was particularly shocking to hear when just 24 hours ago dad was apparently fine. Sure he had “some” swelling but certainly he wasn’t that sick. How could this be? How could dad keep this such a secret for so long? How could none of us see it? Why didn’t any of us force his ass to go see a doctor? And a million other questions came to mind.
You might be wondering how could my mom not know about the severe swelling in his body. My dad didn’t really start complaining about his swelling until the week prior to his death but even then he dramatically understated the swelling. He told me and my mom that he was just “retaining some fluid” and that he was swelling up a little.
In hindsight, the only obvious sign was that the last week of his life he stopped visiting his clients (he was a billboard salesmen) and he always wore really baggy sweatpants and sweatshirts to cover up the swelling. When my mom would ask him what was going on he would simply tell her the swelling was making it difficult for him to fit into his clothes but it was nothing to worry about.
He also never let her see him without his clothes on and he always slept fully clothed. My mom didn’t think anything of it because for the past few months dad was always freezing cold. This was because of the swelling and poor circulation in his body. He always went to bed in sweatpants and sweatshirts.
When my dad was admitted to the ICU the swelling was getting so bad that my dad looked unrecognizable from the waist down. His stomach was so bloated it looked like there was a giant balloon in his stomach that was ready to pop. His thighs and feet were 2-3 times bigger than usual and they were so “blown up” they looked like they were going to pop at any time as well. The color of his skin on his legs and feet were a deep dark purple (almost looked black) and he was getting fluid blisters on his legs and feet.
Because of all the medications they were giving him they were pumping him with a lot of fluids. And because his organs weren’t working, particularly his kidneys, he was retaining all of the fluid being pumped into him. Around 3 a.m. Sunday morning they decided to start him on dialysis in an effort to reduce the fluid retention. Sadly, the dialysis had very little effect. His urinary catheter was bone dry and his body was still retaining all the fluid being pumped into him.
Towards the end of his life, the ICU doctor said that they were most concerned about his skin. Under normal circumstances (i.e. he didn’t have multiple organ failures) they would immediately move him to the burn unit to be treated there. His skin was getting so bad because of the massive fluid retention and lack of blood circulation that his skin was literally peeling off and everything under the skin was starting to turn a black color. The numerous blisters he had all over his legs and feet were literally bursting and peeling off.
They said they couldn’t move him because he would certainly die. His body wouldn’t be able to take the trauma. What they could do is try to find the source of the infection in the ICU but that would require a lot of trauma to his body as well. They’d basically be performing surgery on him in the ICU. They gave him less than a 10% chance of surviving such an ordeal. And even if he did survive and they were able to find the source of the infection, they’d still have to treat it (and there was no guarantee they could) and he’d still have total right side heart failure, liver failure, and kidney failure.
The other option was we could take him off the seven or so different medications they were pumping into him to keep him alive, and then give him morphine for pain and comfort and let him die naturally and peacefully. They said he wouldn’t last more than a few hours after they stopped giving him medications.
There were no good options. We could either put dad through hell on the very slim chance he would survive, or we could essentially pull the plug and let him die. We had to make the most difficult decision in our lives. We decided to let dad go. He died peacefully at 6 p.m. on Sunday, June 28, 2015 – just 90 minutes after the doctor stopped all medications.
Those 90 minutes will haunt me forever. Tears come to my eyes even as I write this. I pray to God that he forgives me for what we did. And I pray to God that dad wasn’t coherent to know we let him die.
What haunts me more than anything is, what was going through my dad’s mind the last 24 hours of his life? Even though he was lying in that hospital bed like a zombie from all the drugs they were pumping into him, he did respond to us periodically.
The doctors kept telling us that his responses could could have been “real” or they could have been totally involuntary from the drugs. They just didn’t know. I hope his responses were involuntary from the drugs because if he was totally aware of what was going on around him, it will tear me up inside for the rest of my life. What if inside he was pleading and crying out to us to let him live or at least let him say good bye?
I just hope and pray he was completely out of it from the drugs and wasn’t aware of anything.
A Heart Condition Killed My Dad but It Wasn’t Atrial Fibrillation
If you have afib and are reading this, you’ll be relieved to know afib didn’t kill my dad BUT it certainly may have played a role. After talking to the ICU doctors and piecing together what minimal information I’ve been able to gather after my dad’s death, a leaky heart valve was the ultimate cause of my dad’s death.
If you recall, my dad’s medical chart from that October appointment in 2014 indicated he had tricuspid regurgitation. This is a disorder where a valve essentially leaks. It allows blood to “leak” back into the right atrium. This causes the heart to enlarge and ultimately leads to fluid retention. And if neglected, the leaky valve will lead to heart failure – which can lead to liver and kidney failure. This is what happened to my dad.
It turns out the cirrhosis of the liver my dad had was primarily from his heart failure. The ICU doctor said it was very likely that most, if not all of the liver damage was a direct result of the heart failing. He said when the heart fails, usually the liver is right behind and when the liver fails the kidney usually follows. It’s amazing how interconnected our organs are.
The sad thing is, heart valves are usually something that can be fixed. Had my dad addressed it, there is a very good chance he would be with us today.
“But what role did his afib play?” you might be asking. It’s possible that his years of untreated afib led to the leaky valve. It’s also possible that he had afib as a result of a bad valve! Even if the two aren’t connected, afib certainly doesn’t help a leaky valve. The heart won’t function properly with either condition so when you have both conditions that go untreated, it’s no surprise he had total right side heart failure.
Lessons Learned From My Dad
I always try to learn from life’s tragedies, be it my own or someone else’s. Here is what I learned:
If someone you love has a health condition and something just doesn’t seem right, you need to get in their face. In hindsight, I should have been more aggressive with my dad. I should have really gotten in his face no matter how mad he might have gotten.
Always see a specialist and try to find the BEST specialist you can find if you have a serious health condition – even if that means you have to travel. My dad was only seeing a local Doctor of Internal Medicine. He wasn’t even seeing a cardiologist – let alone an EP! If you’re going to settle with an Internal Doctor of Medicine, at least find the best one you can find and don’t settle for the “local doctor” just because he’s local. This one still has me shaking my head. What was dad thinking? Why wasn’t he at least seeing a cardiologist? Why was he seeing an internal medicine doc all these years?
Always get a second opinion and don’t hesitate to “shop around” for the right doctor. My dad never even thought twice about getting a second opinion or searching for the best doctor he could find. He just settled with the first doctor he was scheduled with and just listened to him without second guessing anything.
Drugs are rarely a long term answer to any condition related to the heart. My dad was on a beta blocker (metoprolol) and digoxin. While these drugs may have lessened the burden of his afib, they did nothing to treat or cure his afib. If anything, they made things worse by giving my dad the false sense that everything was perfectly fine. They essentially masked his symptoms.
If your body is doing something it normally shouldn’t, don’t ignore it or brush it off as no big deal. Edema is not normal. Healthy people don’t have edema. My dad should have taken his edema as an obvious sign that something was wrong. Instead my dad just chalked it up as something as common as a cold and popped his Lasix to “treat” it.
Always try to treat the source of your health condition and not the symptoms. My dad took drugs that essentially masked his afib symptoms. They did nothing to treat the source – which was the afib itself. He took Lasix which removed the fluid from his body but the fluid retention was a symptom of his leaky heart valve. He should have treated his afib and his leaky heart valve.
Be humble and don’t be afraid to ask for help. Even though I have a blog dedicated to afib and have many connections within the afib community (not to mention all the reading and research I do on afib), my dad never asked for my help. I don’t think he even read my blog. If he did, he never left comments and he never talked to me about my blog.
It wasn’t until about a week before his death that he broke down and called me to ask me about anticoagulants. I was so happy for him and so proud of him for FINALLY reaching out to me. For the first time I thought my dad was finally on the road to better health. It was too little too late, however.
Knowledge is power and is the only real chance you have of beating any health condition. So far I’ve had a good outcome regarding the treatment of my afib. That was only possible because I armed myself with knowledge. From the first day I was diagnosed with afib I started reading about it. I tried to learn everything I could – including how to find the best doctors to treat my afib. If my afib rears its ugly head again and things get worse, I’ll seek more knowledge to find answers. I will never stop learning about afib!
Enjoy life and cherish the time you have with those close to you as you never know when your time (or their time) is up. Is any explanation needed here? Life is short and unpredictable. Live it to the fullest and appreciate the time you have with your friends and family.
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