Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Uncategorized”

It Should Not Have To Be This Hard To Get Cured


I get countless stories across my feed, about patients being denied procedures, treatments, or prescriptions, and not just in the world of cancer. Two recent articles referenced an adult dealing with severe kidney disease and a young child needing medication to prevent flare ups of a chronic illness, which would risk death. Both were being denied what was being decided by their respective doctors by a pen pusher in an insurance company, driven by only profit for shareholders and what is best for them.

It was not always like this. In the 1970’s and early 1980’s, I can recall my mother writing a $25 check to the doctor directly. There was no insurance, just him and his nurse. There was no one dictating to him how to care for his patients. But that all changed once insurance got involved. Then care became about being “managed” with at least some concern about preventative medicine. But still, there were no warning signs that care was going to be sacrificed for shareholder profits as we see today. Today, the insurance industry is out of control with its interference with patient care, resulting in one tragedy after another. And leaving other patients with only one option, to fight the almight insurance company with everything you have, just so that you can get done what your doctor knows is best for you.

First, let’s understand the basics. Only doctors know what is best for their patients for one simple reason. They are the one hands on, in the room with the patient, hearing the patient, with the entire history at their fingertips. Next, insurance companies are like casinos in that, like casinos, also known as “the house”, they both have the advantage, and they only make money if the customers/patients do not win and get paid. So now you understand the odds are against you as a patient. The insurance company cares only about making money for its shareholders, and that means only one thing, deny paying out as many claims as possible, and worse, denying care and treatments.

If you are one of the fortunate, who are either healthy or have what is called a “cadillac plan,” one that covers everything without restrictions, then you have likely never had to deal with a pen pusher denying a claim or treatment. But for those of us that have had this happen to us, we know things have gradually gotten worse, way worse, and people are dying because of it. So I am writing this post, to do my part, to help, at least provide some directions and information, how to do the seemingly impossible, fight the big bad giant insurance company. It sucks that for so many, fighting for their very lives, they have to spend any energy they have to fight for their medical care on top of it, and the odds are against them, and so is time.

Dealing with an insurance denial can feel infuriating because we know our doctors are only trying to help us, but not the shareholders. So there is that constant conflict. And sadly, it is going to take more than one attempt to defeat the insurance company, by putting the right kind of pressure on the insurance company, you can improve your chances. But it takes strategy and focus, all while you are sick, possibly fight for your life against time.

Get the denial in writing and read it carefully. Ask for the exact reason for the denial and pay attention to the policy language they are using as to the denial. Was it:

  • not medically necessary
  • experimental/investigational
  • out of network
  • preauthorization missing
  • coding error

Often times, denials are procedural in nature, and can be fixed. A pain in the butt when time matters, but it is what it is. Coding errors are becoming more and more common and can be fixed by the doctors administration staff (remember earlier how I mentioned only a doctor and nurse handling everything, administration staffing is a major reason for health care costs skyrocketing, and mistakes being made).

File a formal appeal immediately. Insurance companies expect you, expect most people to give up. DON’T!!!! But this is where you now have to ask your doctor to advocate for you and file this appeal for you (actually they will likely have an admin staff member do it). This is not a big ask of the doctor and is really quite common. It is in their patient’s best interest to do this, and do so immediately. The appeal needs to include:

  • a letter of medical necessity
  • supporting medical records
  • peer reviewed studies if applicable
  • a clear explanation of why other options will not work or have failed

If the appeal fails, or time is that crucial, request a Peer-to-Peer Review. This is where your doctor can speak directly with the insurance company’s reviewing physician. But don’t be fooled by the “peer to peer” as anyone knows, there are differences between doctors and specialists. And you do not know the specifically if your doctor is speaking to an actual peer of their standing (as in oncologist to oncologist, neurologist to neurologist or cardiologist to podiatrist or pulmonologist to orthopedist). There is good and bad to this, but hopefully, as long as the conversation is keep professional, if not dealing with an actual peer, the insurance doctor can trust what your doctor is trying to convey. But if true peer to peer, then there should be mutual understanding of what needs to be done. A direct conversation is the best chance to clarify any complexity.

Even then, sometimes those appeals or reviews are not good enough. This is where you really need to advocate for yourself, because your life literally depends on it. It should not be this hard, but you need to do what you can. You have the right to request an independent external review under federal law (the Affordable Care Act). This external reviewer is not employed by the insurance company, and makes binding decisions in many cases. State-specific instructions how to do this are usually found under your state’s Department Of Insurance on the internet.

Depending on your coverage, as in if private insurance, you also have the option to file a complaint with your State Insurance Commisioner. If you are dealing with Medicare, contact the Centers For Medicare & Medicaid Services. And if it is employer-based insurance, you may have to involve the US Department of Labor (ERISA plans). Regulatory complaints often trigger faster re-reviews.

Double-check if it could have been a coding issue. It happens more than you know, especially with insurance companies dictating what appointments should be, versus what the doctor actually does, and contradicts what the insurance company expected. With my complicated health history, this happens all of the time. So, if it was the wrong billing code submitted, or the diagnosis code is wrong or does not justify the test or treatment, or even the provider forgot any pre authorization needed. It is not a big deal to have the doctor’s office double-check the CPT and ICD-10 codes.

If the denial says “experimental,” ask your doctor to be sure to include specialty guidelines, standard-of-care publications, and consensus statements. Insurance companies may relent and reverse when shown what the doctor wants to do is standard practice.

Of course, if the situation is Urgent or Cancer-related, and delay will seriously jeopardize the health of the patient, reqeust an expedited appeal. Response must be faster, hopefully within 72 hours or less. A simple accompanying statement from the doctor, “delay may materially affect the prognosis,” should carry weight.

And if all else fails, there are some other options such as negotiating a cash price (which is often times less than billed rates), speak to a case worker or social worker about financial assistance programs, and if necessary, a legal consultation (especially if the denial contradicts policy language). Your doctor is going to do all they can for you, or at least they should, but understand, like the comparison to the casino, the insurance company only succeeds if they deny, deny, deny, and not pay out claims. They do not care about patients, only profits for the shareholders.

But what the insurance companies do not count on, is persistance. Like really, who does not want to survive what they are dealing with, that you have to fight even harder and waste more time. But keep this psychological strategy in mind. Insurance companies operate on time pressure, administrative fatigue (they count on you giving up), or they may even just get tired of the fight. Some times, persistence is one of the strongest tools in this fight.

Of course, this all circles around to my constant fight for universal health care. Those who oppose it, come up with one excuse after another, and even after it is proven to be the advantage, at the end of the day, it is the mere fact, that some simply do not want the government in charge of the insurance. These people are willing to pay over $20,000 a year, for a private entity to deny them health coverage as opposed to what is already taken out of paychecks, called a FICA tax, which contributes to Social Security and Medicare, an amount of 15.3% total, split in half between the two, so 7.65% to Medicare, already being paid along with whatever your pay towards private insurance. Medicare has a much lower, if any denial rate compared to private insurance, and more importantly there are stronger mechanisms for Medicare to fight any delays or denials. But then the argument falls back on “I don’t want government controlling my health care” or “wait times” (which already exist), or “can’t see who you want” (with a private option, yes you can), or whatever excuse those who oppose want to throw out. It is against your best interest to oppose universal health coverage which is why EVERY other industrialized country has it except for us, because in the US, health insurance is not about patient care, it is about profit over patient. And because of that, good luck with your appeals.

If Sgt. Pepper Was A Seattle Seahawks Fan


(photo generated by ChatGPT)

It was 20 years ago today, the Seahawks had a game to play.

The team play with flashes bold, Alexander’s runs were gold.

Hasselback did the best he could, his receiver’s hands were made of wood.

The Hawks used all their might, the Steelers did prevail, Seahawks NFC champs we stand.

No Super Bowl trophy that year. But does it count if I did not get to see the game?

You see, it was also twenty years ago, this very date, that I was in an airplane, flying over the North Pole, on my way to Nanchang, China, to welcome my second daughter into my arms. In previous weeks, I had joked with my co-workers, to bet their houses on the Seahawks winning the NFC championship. But perennial losers, the Seahawks did not carry a lot of respect, more known for choking. My co-workers did not understand how strongly I felt about this bet. I had Murphy’s Law on my side. News of potential travel advised us that we could fly as soon as February 4th or around that date. It was then, I knew that I would not get to see the Super Bowl, and my team, the Seattle Seahawks would definitely be playing in their first ever Super Bowl.

And that is exactly how it played out. The Seahawks won their NFC championship to advance to the 2006 Super Bowl to play the Pittsburgh Steelers. The Steelers had many Super Bowl championships, this was the Seahawks first trip. Knowing that I could not see the game, as the plane was not going to carry the satelitte link to do so, I simply had to rely on my television DVR to record the game. On the plane, I was wearing a Seahawks jersey, and my older daughter who was travelling with me, was wearing a cute little Seahawks cheerleader outfit. We were the only ones wearing blue colors of Seattle, and were surrounded by many wearing black and yellow, Steeler colors. This was a typical scenario for me, living on the east coast, furthest away from the Emerald city of Seattle.

Somehow, as we landed, some of those same passengers were now approaching me, offering consolation. I was wondering, “how could they know?” And it was a lot of them. As I got to the hotel, I turned the television on, to see a very grainy picture of the last minute of the Super Bowl. The Seahawks had lost, 21-10. At that point, I thought it was just a good game. And then came the phone call to my Dad, to let him know I had landed in China. To prefact this, I need to explain, I am not even sure my Dad knew what shape a football was, but he wasted no time ridiculing dropped passes (even naming the receiver) and what appeared to be blown calls in favor of the Steelers. I would have to wait two weeks until I returned to the US and watch what I recorded.

Unfortunately, like the game itself, a technical issue resulted in me not being able to watch the game. So the first and only time up to that point, I never got to see the Seahawks in their first Super Bowl.

But as I said, I had much bigger plans that date in 2006. I was becoming a Dad for the second time. Having gone through the adoption previously, I was more comfortable with the process, enough so, that I was able to help other new parents on their first journey.

Time would pass, and each time this date comes around, I call her my Super Baby, and yes, I wasted no time in raising her to be a Seahawks fan (whether that holds today or not remains to be seen, but I tried).

So here we are, on the 20th anniversary of that Super Bowl I did not get to see my team, the Seahawks play, I also celebrate the 20th anniversary of the adoption of my youngest daughter. And 20 years later, the Seahawks are in the Super Bowl again, playing a familiar Super Bowl foe, and will hopefully reverse the tragic results of 2015, on a blown coaching call, not calling for the guaranteed touchdown run by Marshawn Lynch, opting for a pass play on the one yard line, intercepted by the Patriots to seal their win. Sunday, I am hoping the Seahawks correct that history, and leave no doubt.

Go Seahawks! And Happy Anniversary to my Super Bowl Baby!

“The Talk” With Kids (About Cancer Or Other Serious Illnesses)


If you have followed “Paul’s Heart” long enough, you have seen this photo many times. It was the beginning of my “late term side effect”phase of my cancer survivorship, caused by my treatments for Hodgkin’s Lymphoma eighteen years prior, back in 2008. My daughters were 3 and 5 at the time, never knowing me during my cancer days obviously. But for the first time, my daughters would be immersed into a world of urgency and uncertainty, and have no understanding of “why” or what the risks were.

The three of us had never been apart from each other, EVER! In April of 2008, a nuclear stress test ordered by my primary care doctor after complaints by me about crippling chest tightness, I was only supposed to have a cathaterization done to place a couple of stents with my heart. That morning I was supposed to go to the hospital, I dropped my daughters off at daycare and school, and told them that “Daddy needs to stay in a hotel overnight tonight, but I will see you tomorrow after school. OK?” Not even batting an eye, the scampered off to their friends. Clearly I was more worried about them than they were about me.

Unfortunately, the cath did not go as planned. Once inside, they realized the damage to my vessels was much worse than they anticipated, and ceased the procedure. As I came to, it was being explained that I had what was nicknamed a “widow maker”, appropriately so as this type of blockage, normally causes a fatal massive heart attack. I would have emergency heart bypass surgery less than 24 hours later.

I have seen many heart patients tortured by time, waiting weeks or even months to have this time crucial surgery to be done, stressing to the max. After all, when you get told by a doctor that “it is not a matter of ‘if’ you are going to die, but ‘when'”, the fear is multiplied. For me, I did not have as much time to think about it. In fact, I was still coming out of the anesthesia several hours, so as they were sending me here and there for all kinds of pre-op procedures I really did not grasp what was happening.

Later on in the evening, it finally hit me. I was supposed to see my daughters after school. And now, I was not even going to get to see them, hug them, tell them I loved them, before I had this life or death surgery. There was a major chance I would not survive the surgery. What would they be told?

My daughters were no strangers to this situation however. Close friends of theirs lost their father to a heart attack some time before they met. It was the first time they would know of a dad or any parent dying with young children (but not the last). As determined as I was to get through my procedure, the true determination for me was to not leave them without a Father, which of course I had no control over, but gave my doctors the best pre-game speech I could, including the visual aid of my daughters’ photos.

I did not have access to Facetime or any video call device back then, so the best I was able to do, was to talk on the phone to my daughters that evening. Having already given them a false story as to where I was going, I did not want to make it worse because of the current situation. I simply just told them, I was going to be away a bit longer, but I would see them soon (though there was no guarantee of that part).

My Father told me of his mother’s passing and how it had impacted him. He was not a child, though still fairly young. He had been lied to, explaining that she was sick from her gallbladder. Only after she passed, did he learn that she had gallbladder cancer. But the images of how she looked toward the end of his life, haunted him forever, not because she had cancer, but because she was lied to.

It would three more days before I would see my daughters, when they were brought into the hospital. I still had tubes in my abdomen, and I was still connected to various machines, but I was in great spirits, especially finally getting to see my daughters. Their reactions when they came in were as to be expected, tepid, cautious, confused, and concerned. They approached me slowly unsure what to make of what they were seeing. While my older daughter was curious about all the beeping machinery, my youngest had made her way up onto my bed, and nuzzled against my side, fortunately not trying to rest on my chest. All of us knew that things were going to be alright. Well, sort of.

Learning this crisis was caused by my treatments, I travelled to Memorial Sloan Kettering Cancer Center, where they studied long term survivors and late effects that survivors developed. I was going to be no different. Here is where a decision was going to need to be made. With my daughters so young, what do I tell them, that my life and health was not going to be the best, that my mortality risks had increased? They were still so young. I had a psychology background and knew the best thing was to be “age appropriate”, but direct and honest, not to hide behind general words such as “just sick” or “has an ache,” which would only translate to them the bad things happening to them that is happening to their parent. No, they need to be told the truth.

It is important that children know it is not their fault what is happening. Descriptions should be kept simple for younger children, “bad cells”, “medicine to make better”, while teenage should be talked to with more transparency, still being sensative.

In the first few years of my survivorship, my daughters were being told by others that I was okay, that there was nothing wrong with me now that my heart was fixed. I did not agree with this approach, not only because it was wrong, but because it was not true. There were many more issues that had been discovered through this survivorship clinic that needed attention. And each time that I travelled, the girls were told I was taking a trip to New York. That is all that they knew. Fortunately, that worked out, as I came home each time. They were relieved.

Following my divorce in 2013, my survivorship health would actually get used against me, being used to keep my children from being with me due to my now unpredictable health. It forced me now, to not discuss at all when I was seeing my doctors or when things were going to be done, which hurt me more than ever, to not be able to let them know what was happening. That if anything went wrong, they would just be told what happened and that was that.

In the many years since, my daughters have seen close friends lose a parent at least three more times. And each time I faced a crisis situation, that was all that I could think about. I did not want to cause the sorrow and grief that I know they saw their friends experience. But they really have not had any concept of how a bad shape my body’s condition really is. My doctors actually tell me that I often do not appreciate the seriousness of some of the things I deal with.

A few years ago, as my youngest daughter aged out of the custody order, I was finally able to be upfront thoroughly with my daughters, now that I knew they could not be kept from me because of my health. But I still wanted to be gentle with how they were told, and be sensative to the amount of “bad news” they needed to learn about me as adults. The first test came following my 3rd heart surgery, to replace my aortic valve. They were told about it before it happened, and then with the wonders of technology and Facetime, got to see me soon after.

Since then, my daughters get told everything they need to know, so there are no surprises, and no regrets. They have plenty of confidence in me to get through the things I do, but also respect there will be a limit. Our time and conversations with each other however, do not revolve around my health, only when they come up. Instead, we are definitely focused on the things that matter at the moment, their schooling, starting their lives, and just having fun chats.

But every now and then, one of my daughters will approach me about a thought in their head, or a question. And because I have been up front with them all of these years, I know that I can assure them, so they do not worry. I was not expecting to see this text however. She was bothered that while she sees TV ads for cancer, she never sees anything about survivors and the issues that they (I) deal with. There is no media showing what life is like for those after cancer, dealing with the aftermath of treatments, that just being given a label, “survivor” should be good enough and thankful for that. She was frustrated that nothing gets discussed about survivors and the trauma, physical and emotional, that survivors live with as they deal with one health issue after another. Great! You beat cancer, but at what cost? Just be grateful you get to wake up and spend another day with your loved ones.

This conversation was sent to me at 1am. She is one of the few that gets our frustrations as cancer survivors. We just get dismissed at a five year mark, when it is felt our cancer is gone forever, unprepared, and no plan for what happens next or to live with the many challenges that come our way.

On the plus side, I think we cancer survivors have another advocate.

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