Our medical journey began with Terry’s damaging heart attack almost fourteen years ago. He seemed otherwise healthy and was active, and we didn’t see it coming. He had open heart surgery four years after the heart attack when a staph infection invaded his heart chambers. Both of those were difficult medical events for him to overcome, but he did overcome to the best of his ability. He then started having other medical issues that put the heart problems on the back burner. The funny thing about your heart is it doesn’t like being ignored…you will be reminded that there is a problem, and it will get your immediate attention.
I’ve heard some of the scariest words doctors have to utter to the loved ones of their patients. “He’s had a massive heart attack and we won’t know the extent of damage for some time.” “He needs open heart surgery.” “He has thyroid cancer.” “He has a potentially fatal condition known as a pheochromocytoma.” “He has stage 4 bladder cancer.” “The damage to his heart after all the defibrillation shocks was extensive.” These are words you do not ever want to hear, because they are all life threatening events. I know most people out there are especially scared of a cancer diagnosis. But a heart condition demands your attention in literally the beat of a heart. One moment you are fine, and a moment later your life is at risk.
I’m not saying heart problems are worse than cancer or other debilitating diseases, but it is an event, like an accident, that is totally unexpected and out of the blue. It forces you to accept that all of those things you thought were important don’t really matter when a loved one is fighting for his or her life. It requires you to acknowledge that the plans you have are of no consequence if your loved one isn’t there by your side.
About ten weeks after Terry’s heart attack, his sister’s husband had a massive heart attack that he did not survive. I asked her last week at the hospital if it was worse to watch a loved one battle so hard to live or be blindsided by the bad news that the battle was lost before there was a chance to fight back. She responded that while what she went through was difficult, it seemed I was continually tortured. And she was right. Every time Terry goes through a major medical event, it takes a tremendous toll on me physically and emotionally. This last event was so horrific, because I could see the apprehension on his face and the tension in his body as his heart rate accelerated to the point the heart was shocked by his defibrillator in attempts to regulate the beat, and he knew it was coming. He experienced a total of 21 shocks in less than four hours. Horrific is the only way to describe it. I couldn’t leave the ER room while he went through that to make it easier on me. He needed me in there, and I needed to be with him to coax him through it and encourage him to breathe and try to calm his heart all he could. It scared both of us to realize that was necessary to keep him alive. Without the device working to regulate the irregular beat, he would be gone now. And we both know that if he endures another such event he will have to experience it all over again. Neither of us want any part of that.
So on this day before Thanksgiving, Terry has again defied the odds against him, and will be here with us when we sit down as a family to share a meal and a sense of gratitude for all we’ve been fortunate to receive. There is nothing more we could have asked for than to have him at the table one more time…we are blessed to have been given just that.
In response to today’s ruling by the US Supreme Court regarding the constitutionality of the Affordable Care Act, I am posting the same blog on both my medical/health website: themedicalmysterytour.com and my political website: progressiveviewfromthemiddle.com. Today’s ruling encompasses components of … Continue reading →
We’re entered an interesting phase in Terry’s healthcare experience. It seems we will now have to fight for some of what we think he needs. He’s been denied a medication prescribed by his physician by his prescription drug carrier. Because … Continue reading →
When it comes to disclosing medical conditions and potential treatments, we’ve learned the hard way that even when you think you know what’s going on, you don’t know it all. I understand doctors don’t have enough time to invest determining how a patient or patient’s family member will react to bad news and tailor their discussion accordingly, but it’s frustrating to learn that we didn’t know nearly as much as we thought we did.
After the scope of Terry’s bladder that discovered the cancer there, the urologist was very upbeat and optimistic about the procedures and Terry’s likelihood of going home the same day with no catheter. Standing beside his bed minutes before the surgery, we learned that not only was the cancer in his bladder, but was in the urethra, and running through the prostate. He is still confident that they will be able to get it all, but they will not be doing it the way Terry and I understood the procedure would be done. We both thought that they would remove a layer and send it to pathology, and keep repeating that process until the sample came back clean. They will not. They will take all they think is necessary, and then that will be sent to pathology with results to be provided approximately 5 days later.
This means that he may potentially have to undergo longer chemotherapy than anticipated. He was told that he would just have the initial treatment after surgery to make sure they got all cells, but if the pathology report comes back with negative results, he will have to complete a more comprehensive treatment course with chemotherapy. It was also disturbing to learn that the cancer was more extensive than we were initially told. He knew about the malignancies in the urethra, and had briefly mentioned it to Terry at the time of the scope, but I did not know anything about it until right before his surgery.
I’m struggling to understand why there is not full disclosure by physicians about the real extent of what Terry will go through. The details always seem to come after the fact. They will let us know the possible negatives consequences of the treatment or procedures, but withhold details about what to expect when the treatment or procedure is completed. I’m sure there is logic on their end about what they’re doing, but from the patient’s standpoint, there’s a world of uncertainty enveloping them.
It also doesn’t help the wait for me while he’s in surgery to find out minutes before that there is more going on than previously revealed. It leads to questions that are not productive and makes the wait even longer and more difficult. In the vast and complex system that is the KU Medical Center they may have to tailor all procedures to benefit doctors and medical staff. But I will never believe that less information is the way to go. As long as I’m fighting for Terry’s health, I refuse to think less is more. It’s not.