How To Talk To Hospitals was created to help those dealing with an illness or caring for a sick loved one feel more equipped, informed, and confident about advocating and ensuring quality care.
Does this sound familiar?
JUST BECAUSE IT'S NORMAL FOR THEM DOESN'T MEAN IT'S NORMAL FOR YOU.
You go into the hospital or a doctor’s office and it seems like everyone knows how things operate…except you.
YOU KNOW HOLD
MUSIC BY HEART.
You get inundated with 800 numbers and everyone you call either doesn’t have an answer or keeps giving you a new number to call.
YOU ARE UNDER STRESS... AND A MICROSCOPE.
Everyone is looking to you for answers and to make decisions right this very second. At the same time, you feel like you’re being judged for every decision you make.
YOU FEEL GUILTY FOR NOT BEING AT WORK AND FOR NOT SEEING FRIENDS.
And then you feel guilty for thinking of yourself when you “should be thinking of your loved one.” You can’t relate to anyone right now and it seems like no one can relate to you. So you ice yourself out even though you’re going through a time where you need people the most.
THE WORLD IS STILL TURNING... WHAT'S UP WITH THAT?
You become frustrated because you’re dealing with something world-changing (at least to you) and yet, life is going on without you. You also might wish this were a bad dream that you might wake up from…
YOU'RE TRYING TO KEEP EVERYTHING IN LINE, BUT YET YOU'RE POWERLESS TO DO SO.
Sometimes, you get annoyed because no one is talking to you – especially because it is YOU who is calling on behalf of your loved one. They won’t speak with you simply because your name’s “not on the account” or you don’t yet have power of attorney.
I know what it’s like… This is my story.
My husband, K, was diagnosed with cancer, a type of cancer that is normally easy to cure and can be done without chemotherapy.
Two major surgeries and thankfully, no chemo later, K’s cancer was in remission!
Unfortunately, the cancer returned. K started chemotherapy. This is where things got scary. Really scary.
Sunday, April 26, 2015. K was extremely ill all morning. Given the fact that he had chemo two-days earlier, we thought that he was dealing with a typical case of chemo-related dehydration. But something didn’t feel right, so we called the on-call doctor who told us to head to the ER for fluids.
“We’ll be in-and-out within a few hours.”
When we got to the ER his heart rate was sky high, his blood pressure, while initially high, was dropping fast, and his breathing was becoming more and more labored.They ordered test after test after test, though no one was talking to us to explain why. I quickly realized that this was no longer a typical case of chemo-related dehydration and that I was wrong, very wrong, when I told him earlier that “we’ll be in-and-out within a few hours.”
Suddenly – what we thought was dehydration became a life or death situation.
K continued to deteriorate. We moved from the ER to an oncology floor before moving to the MICU when they lost his pulse. By the time I saw him again, he was intubated. I was then told that he needed surgery, emergency surgery. Suddenly – what we thought was dehydration became a life or death situation. In fact, no one thought he would survive the surgery.
The next few hours were full of tears, pacing, and panic. He survived, thank God. But things didn’t stop there. K endured ten more surgeries over the course of the next 14-days, another very scary emergency in late May, and a rather large setback that would hold him hostage in the hospital for five months before another MAJOR corrective surgery in October of 2015. The good news? The little chemotherapy K managed to receive before all of this trauma was enough to send his cancer back into remission.
Unfortunately, his cancer returned just as we were about to head to rehab. K spent another five months in the hospital while receiving chemotherapy and dealing with even more complications.
Fifteen months after the day we walked into the emergency room, two code blues, one rapid response, the loss of his vision, and a lot of other scary and dramatic moments in between, though, K came home. Forever changed, but home.
What to Expect From How To Talk To Hospitals
How To Talk To Hospitals is about helping you navigate our complicated healthcare system and obtain the best care possible for your loved one and yourself. Our content is a combination of advice, how-to’s, and personal stories aimed at helping you and your loved one make sure your voice is heard, all based on real experiences.