Stop Playing With My Life It has only been one week since my blood pressure decided to drop lower than customer service standards, and pneumonia marched in like it owned the place and confined me to bed. Now, being stuck in bed with ALS is already enough drama for one household. I do not need extra foolishness sprinkled on top like hospital seasoning. So when they told me on Friday, “Mr. Goode, you’ll get your PICC line on Saturday,” I said, finally, help is on the way. For those who do not know, a PICC line is basically a long-term IV placed in your arm that reaches a larger vein near your heart. In normal people language, it is the hospital saying, “We are tired of hunting for veins every day, so we are installing a VIP entrance.” It helps deliver medication, fluids, and treatment without turning your arm into a connect-the-dots puzzle from repeated needle sticks. And right now, I need that VIP entrance. Saturday came. No PICC line. No appointment. No cavalry. Not even a nurse walking in with confidence and a clipboard. Then Mother’s Day came, and instead of celebrating properly, I had to retire early because I felt horrible. That is when you know you are sick, when you leave your own Mother’s Day celebration like an old church deacon slipping out during the third offering. So surely Monday would be the day. But see, I am married to Tanja Tinese Goode. Tanja does not just ask questions. Tanja investigates. That woman does not make phone calls, she launches federal inquiries with lip gloss on. She made a few calls and found out what we had been told was not true. No appointment had been scheduled. Nothing. Nada. Zero. And the next available appointment was two weeks away. Two weeks? Ma’am, I am not waiting on a table at Applebee’s. I am fighting pneumonia with ALS and blood pressure that has been acting like it owes gravity money. And if you know anything about me, you know I cannot stand being lied to. So I gave Tanja instructions. Tell them to stop playing with my life. Now, I do not know who was on the other end of that phone, but I hope she had comfortable shoes on, because Tanja released holy hell with excellent pronunciation. To that lady, I may have just been a name on a call sheet. But that name belongs to a husband, a father, a grandfather, a friend, and a man who is still fighting. ALS warriors and caregivers, hear me clearly. Trust, but verify. Ask again. Call again. Get names. Get dates. Get confirmation. Because too many times, I have seen that look. The “you have ALS, you are going to die anyway” look. No ma’am. Not today. If you are working in healthcare and you do not care about the people you serve, get another job. Because lying to sick people is not a mistake. It is dangerous. And around here, we call it what it is. Stop playing with people’s lives. Praise God, today I finally received the PICC line.
Your wife sounds like a force to be reckoned with! Glad you got your PICC line in - will make life easier. I experienced challenges this winter - the medical system might be all tech savvy - but there is a disconnect between the person to person relationship. Not everywhere of course....but certainly we want to all stay on our toes. Trust, but verify! That's for sure! Feel better!
Your PICC line story is SO relatable! I am the ‘Tanja’ in my post Hemorrhagic stroke’s story who had to protect & divert unintended harm to him, often, due to delayed care. Our biggest barrier was not being ‘heard,’ as a person with Patient’s Rights, after a tracheostomy stole his voice. I, recently, posted Health-care or Humane-care? | LinkedIn because once he lost his voice, the disregard of his intrinsic value amplified this battle. Isn’t this common for ALS patients? I am curious how quickly patients get the tools to ‘have say’ in their continued care. The irony in his case was that, after a fall, he went to the ER for a wellness check, but was an uninjured man. It took 212-days to get him transferred to a continuity-of-care hospital, where his requests were honored & it led to his recovery. The gap in communication you mentioned is, probably, where patients become exposed to unintentional harm. I, & the World Health Organization, fully recognize Tanja’s battlefield. For 20 years, W.H.O. has been reporting, as many as, 134M patients are victims of unintended hospital harm annually. Kerry, this is a David & Goliath Story, too often, only understood in hindsight. Bravo, Tanja!
Glad you were able to get your PICC Line. From an imaging director who manages some lines with interventional radiology, sometimes you have to push. Everyone needs an advocate like Tanya👏👏👏There are so many patients and not enough resources including people who are credentialed to perform the services. Hang in there and stay strong and push my Bama brother!
Warrior!
There's no quit in your house, for sure. Keep on keepin' on, brother. Your light helps everyone who comes into contact with you. 🙏 🌞
Tanya....Tanya....Tanya...keep advocating for Kerry!
Praying you feel better soon. Thankful you received your PICC line. 🙏🏼
My Man 😎
Praying you’re better soon!! 🙏🏻🙏🏻🙏🏻
Kerry Goode I don't even have words. Chills on my arms, disappointment and anger setting in. I am so sorry that you experienced this, but unfortunately, I am not surprised. We have to do better. Having been on the frontlines with the people who care for patients like you, I know that most of them are doing their best within a system that is fundamentally broken. That is not an excuse. We pay frontline staff in many regions wages that don't reflect the weight of the work, and we somehow do this while spending more on healthcare than any other industrialized nation in the world. The money is there. The care is not reaching you. Your story is exactly why it matters. A beloved husband, father, grandfather, and friend fighting for his life should not have to deploy his wife as a one-woman federal investigation just to receive the care that was already promised. The least our healthcare system owes you, with all the money flowing through it, is to show up the way you need and the way you deserve. I'm grateful you got the PICC line today. I'm grateful Tanja exists. And I'm grateful you keep telling these stories, because they are exactly the truth that the system needs to hear.