CDC Symptom Diary Card

Tuesday, October 24, 2023

“What Do You Want Me To Do About It?”

​An almost perfect stay at a local hospital turned into the hospitalist treating me like I don’t matter.  Trying my best. I went to ER on October 15, 2023 with excruciating abdominal pain, nausea, vomiting and shortness of breath.

Scan showed pleural effusions, right greater than left.  My absolute neutrophil counts were critically low.

During my stay I was seen by 2 hospitalists and a new one on the day of discharge.

The pulmonologist told me Monday he was not aware of pathology of pleural fluid.  2 liters right, 1 liter left (Fri/Mon).  I had 2 different pulmonologists. 

I’m finally home on oxygen and dilaudid. Counts much better. Exhausted, barely eating and weak.

Monday night I read through the notes and I find that there WAS a path done on Friday’s pleural fluid.

The report stated that right plerural fluid is positive for malignemt cells! That is traumatic info.

There I was all by myself, not even expecting the report, learning that everything from this point forward will be different. My CA125 is almost 2000.

I cried and told my friend Pat when he arrived later that eve to take my car home. After he and Sarah left I asked my night nurse why am I finding this bad news by reading it in my patient portal? I said I wanted to talk with the hospitalist first thing.  Of course that did not happen. 

My Monday hospitalist could have alerted the on-call hospitalist to tell me in person, but that did not happen.

This morning I asked to see a patient rep because the new hospitalist just kept saying there was nothing she could do.  She got defensive and kept complaining that she had just got there (hours ago). No apology.  

Nothing. This was traumatizing information that should have been given to me by a caring person. Instead I read about it like you would any lab result. 

Then an administrator came in and behaved worse, she said “what do you want me to do about it?” As if I am wrong for expecting better care. What did I do wrong?

This entire hospital visit has been terrifying because I am being forced to have conversations I’m not ready for. I had no idea I would be in hospital for over a week.

I haven’t even had a chance to talk with my gynonc.  She is in Greeley/Loveland.  I live 2 hours away from there. I finished radiation on Wed and had to go to ER on Sunday. None of this was expected. 

I had heard thar I can keep getting my lungs drained.  It looks like hospice is on the horizon.  I don’t want any more treatments that throw me in the ER. I can’t take it any more.  

I will update later in the week when the fog clears.  I want to stay home this week.  I have to process the trauma from the hospitslists’s complete disregard for my state of well being. Why is this so hard? Because I am alone.

God Bless you from Denise


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