Baldies' Blog began originally in the UK by a 26 year old journalist with a blood cancer on a mission to inform the world about bone marrow donation.

He has since died, and I took on the cause of making cancer care more transparent for everybody.

Cancer is a disease that will touch everybody through diagnosis or affiliation: 1 in 2 men will be diagnosed and 1 in 3 woman will hear those words, "You Have Cancer."

I invite you to read how I feel along my journey and
how I am continuing to live a full life alongside my Hodgkin's lymphoma, with me controlling my cancer, not my cancer controlling me.

I hope that "Baldies' Blog" will prepare you to handle whatever life sends you, but especially if it's the message, "You Have Cancer."

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Thursday, March 19, 2009

Patient 101

I’ve been sick so long I forgot some very basic problems people have accessing care.
Actually, I even forgot that people have a tendency to freak out when someone is extremely ill, or possibly dying, in their presence.
I worked to remove this fear from me long before I ever became sick.
I decreased my anxiety for these situations by exposure. A small level of anxiety is necessary to intensify accuracy and perceptions. Too much anxiety will cause the inability to think and cope with the stressful situation.
Anxiety levels are measured based on heart rates and other nervous system reactions. Your body’s natural response to stress begins to have a tolerance after frequent exposure to a similar dangerous situations.
I don’t necessarily feel anxiety anymore. Actually, I forgot anybody ever did. I also forgot that many people do not know some very basic, simple steps to accessing care quickly. Here are the basics:
1. Know your Primary Doctor and their number. Your primary doctor is the doctor you see the most. It’s your go-to guy or gal. It may be a specialist, in my instance, my stem cell transplant specialist. I also have back up numbers, but let’s keep it simple. KNOW YOUR SPECIALIST AND THEIR NUMBER. KNOW HOW TO GET AHOLD OF THEIR COVERAGE (WHOEVER IS TAKING OVER FOR THEM) AFTER HOURS.
2. Call. Know their first name and last name.
3. Know your diagnosis (ie Hodgkins).
4. Say why you’re calling. “I don’t feel well” is not okay. “My central line is red and hurts,” “I have a fever of 102,” or “I’ve been throwing up for three hours straight.” Works.
5. Drop the modesty. If you are urinated blood, that needs to be said, clearly.
6. Ask for the doctor to speak to the provider directly.
7. Do not take no for an answer. A patient/provider relationship can be likened to a consumer/business relationship, if you have emergent fears, trust you gut, demand what you want.
8. When speaking to your provider, Do not sugar coat symptoms. If you have excruciating abdominal pain. Don’t talk about how great you have been doing. There is a reason you called.
9. Answer their questions. Do not hide symptoms because of embarrassment.
10. Follow their advice. If it’s sleep through the night, call in the morning. Do it. If it is do not pass go, get to the ER, do it. There has been a lot of education and training involved in their answers. Defer to their judgment.
11. Have your caretakers know how to do this. Give it a trial run while you are healthy. This will ease the stress if you need to call in the middle of the night, are groggy, and having trouble thinking.

1 comment:

Erica said...

Hi Hillary. Those are great tips. We've called my docs at all hours. And my mom's fought with ER docs that don't wanna get in touch with my specialists because they think I'm ok. I've also started carrying around a copy of a normal EKG (well, normal for me) and when I'm in junctional arrhythmia so they can compare. So, I think it's a good idea for patients to have recent labs or EKGs on them in case of an emergency.