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You are not always your own best advocate

KatieB

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Last week I took a local lung cancer patient and long time friend "J" to get his scans. This will be a very abbreviated account of what happened.

Even though we are only an hour apart, I haven't seen "J" in a couple of years.  He has an incredible story of being dx in his 30s and some amazing heroic efforts when into saving his life.  He's even been in the news and media.  Since that time 10 or more years ago, he's struggled to live and battled a few recurrences.  

They "think" he had a recurrence at the end of last year.  Several bronchoscopies yielded no detectable mutations and caused several complications for him.  He has lost a significant amount of weight (6'1 and 140 pounds) and he hasn't been able to stop coughing.

His dr scheduled a PET scan.  Because "J" could no longer drive, he asked me if I could take him to the testing facility.

I could not believe what I saw.  He was SO thin and his speech as a little slurred.  He looked glassy-eyed. The nurse had a hard time accessing a vein.

Because he couldn't hold a conversation or drive himself- I borrowed a wheelchair from the testing facility.  I filled out his paperwork- dug into his wallet for his ID and medicare card.  He has been on oxygen and the machine that the company shipped to him was faulty.  When he called them they said they could come in 2 days.  TWO DAYS?  I drove him to a pharmacy that sold oxygen and had it fixed.

The entire time I kept thinking...what would have happened if I could not have come today?  What would have happened if I wasn't here?  He would have tried to drive himself.  He would have been in serious trouble.  He would have been out of oxygen and maybe in an auto accident.  

The PET nurse couldn't do his infusion because his blood sugar levels were frighteningly high- even though he said he hadn't eaten in about a week due to no appetite.

I just felt like things were going sideways.  I asked him to call his oncologist.  He spoke with the nurse.  He asked her if she would order some fluid because he has been confused and weak.  She said no.  "Just drink extra water and mix in some gatorade."  He hung up and looked defeated.  He told me that the nurse said no.  He didn't have pain meds.  He didn't have medication to help with the cachexia, he didn't have medicine to help with his cough...he didn't have a working oxygen machine. Now this nurse was telling him he couldn't have a bag of fluids.

WHAT?  ANYONE can go to the ER.  "I'm taking you to the ER for fluids!"

So off we went.  I took him straight to the ER and he didn't argue.

Long story a bit shorter- he ended up being admitted for some serious issues.  They transferred him from one location to another one downtown. He got his fluids.  The last time I saw him he was eating his lunch in his hospital room.

He isn't out of the woods- not by a long shot.  But he is a better than when we started.

Why am I sharing this story? Because "J" is college educated.  He has been in the lung cancer space almost a dozen years.  He understands the lingo and knows how to be an advocate.

But what happens when  you are dehydrated, confused, malnourished, and in extreme pain?  How can you advocate for yourself?  

If it's ever possible, please have someone with you- especially when you are feeling bad.  

 You are not always your own best advocate

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You did the right thing and I hope that there has been a happy ending.  And you are correct, don't always rely on yourself to make sure you are getting the best medical care. My take on being your own advocate involves far different circumstances and in no way is meant to be a comparison with those you described.

My situation relates primarily to an oncologist that had a chemotherapy treatment bias and said the tumor board felt my circumstances were high risk (high "morbidity" were his words) and I asked for a second opinion.  ONLY THEN did he say he would refer me to the surgeon for evaluation and mentioned a clinical trial as well. The surgeon said removing the nodules was "routine." 

See attachment
 

2019 06 01 Patient Advocate You!.docx

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