Diary of a Dying Woman: I Was Drowning From the Inside Out—And No One Believed Me

April 17, 2020 – From my hospice diary:

I’m back in the hospital—swollen, tired, and uncomfortable. My legs feel heavy and tight. My feet are so puffy I can’t even wear the hospital socks. I can feel pressure in my whole body, and I ‘m so short of breath just sitting in the bed. I know something isn’t right.

They gave me Lasix and said that was all I needed for today. I took the first dose and waited. Almost nothing happened. I barely peed. The fluid is just staying in my body, and I can feel it getting worse by the hour.

I’m so damned frustrated because I know what works better for me. At home, I take Toresemide and Metolazone, and it helps to pull the fluid off.  I’m sitting here full of fluid, knowing exactly what would help—and no one’s listening. I tell them what works. They ignore me and give me Lasix again. Repeating the same results making my head hurt!

After another sleepless night and no results, I finally spoke up. I asked to talk with the care team and told them, “If you’re not going to listen to me—the person living in this body—then call my cardiologist. He’ll tell you I’m right.”

I wasn’t rude. I am trying to survive.

April 17, 2020 – From my hospice diary:

This morning, the care team came back and said, “We’ll go ahead and try what you suggested.”

And as I said . It worked.

Once they gave me the meds I used at home, the water started coming off and the swelling started to go down. I could breathe easier, and we were finally able to move forward with the rest of my testing.

That day, I wasn’t just asking for medicine—I was fighting to stay alive.Speaking up in hospice wasn’t easy. I was weak. I was exhausted. But I knew what worked for my body, and I had to speak up. Because if I didn’t… who would?

I’m sharing this because it happens to patients all the time. We know our bodies. We know what helps. But too often, no one listens.

Let this be your reminder:You are not “difficult” for speaking up. You are strong. And your voice deserves to be heard.

And to the doctors and nurses reading this:Please listen. We’re not being difficult—we’re trying to survive.

#HospiceSurvivor #PatientVoice #patientadvocacy #medical #doctor

#selfadvocacy #healthcare #healthcareworkers  #advocate #Heart2HeartTalk