Friday, September 25, 2009

A day in the life

After my post about healthcare in Malawi, I got a few responses that basically said “we are so lucky in the U.S. to have good health care!”

I didn’t want you guys to get to feel so smug. Yes, a slim majority of people in the U.S., if even that, are lucky enough to have quality, affordable healthcare. The rest of them either go broke, or get “indigent” care services, which is the government’s fancy euphemism for poor people.

I was indigent once. I got cancer. This is what a typical day is like when you are poor and sick. This is all true. Everything I’m writing here actually happened personally to me. I know this post is long, but it is close to my heart, so I thank you if you get all the way through.


I wake up at 6AM. I scarf down a quick breakfast, then Jorge drops me off at Charity Hospital, in New Orleans, for my bi-weekly oncology appointment. My first stop is the registration office. Although it is only 7 o’clock in the morning, the room is already full. The oncology unit doesn’t schedule appointment times, just days, so the optimistic belief is that if you’re the first to arrive, you will be the first to be treated.

I took a number. There were no seats available, so I hoisted myself up onto a table top and waited. 45 minutes later, my number was called. I go to my assigned booth, where a surly clerk does not say hello, smile, or look at me. She asks the usual questions, name, illness, age, marital status, then chastisingly tells me that I need to go to the accounts department to verify my income. I am intimidated by this woman, so I don’t tell her that no one has ever told me this before. I just acquiesce and hope she will say that my registration is OK. When you’re getting free healthcare, you keep your head down and hope that no one takes any special notice of you, always afraid someone is going to say “woops, we made a mistake! You owe us $53,752!”.

The clerk tells me to pick up my registration card, a little blue plastic card with my name and patient number. I have a huge collection of these by now. It is now 8, and I make my way down the hall to Oncology. Already, the waiting room is filling up. Although appointments are supposed to start at 8, there are rumors that none of the doctors have even arrived. At 9, the first patients begin to be called.

There never seems to be any order to the names called. One day you can come late and get right in. But usually for me, I come early, and I wait. For hours. So does almost everyone else. I hold my pee, because I’m afraid my name will be called while I’m in the bathroom and I’ll be skipped.

I don’t fit in here. I’m young, for one, and almost everyone else is old. I still have my hair. And of course, I’m white, definitely the minority here. Seated in the row across from me is a man in a yellow Orleans Parish Prison jumpsuit, literally in leg irons. I feel bad for him. I chat with the woman next to me. Her husband and son both died in the last year, and now she has breast cancer. The chemo has been very hard on her; she is feeling like she just can’t do it anymore.

Finally, just after 11, my name is called. The nurse is nice to me, she remembers me. But although I have seen the same doctor many times by now, my doctor never remembers me. I spend the first 5 minutes of every appointment telling her about my case.For all that wait, the appointment is short. After a curt 15 minutes, the doctor races off to another patient.

Today I am scheduled for CT scans. First I have to get bloodwork. I don’t mind the bloodwork so much, because the women who take my blood are always very friendly, and they stick my vein on the first try every time. Of course, there’s another 30 minute wait, but it doesn’t seem so long in comparison.

Then I travel to the basement for my scans. On the elevator, I bump into an old grad school classmate, who is studying to be a doctor. We used to be friends, but now she seems extremely uncomfortable by my presence as a patient. We are both relieved when the elevator doors open and she leaves.

The radiology department looks like it was last decorated in 1932. It’s grim and dark, but with jazzy art deco tile reliefs. It’s 12:30 once I get there, and I haven’t eaten or drunk anything since morning, as this is forbidden before the CT scans.

There seems to be some problem today, as the wait is even longer than usual. Hours pass. It turns out that only one scanner is functional, because in the early hours of the morning, a man bled to death on the other, and it needed to be cleaned. I can’t stop thinking about this man. I hear sad stories every time I come to Charity, and they all lodge inside me, this private club of tragic figures that keep me company for all my medical care. They make me feel heavy inside.

A little after 3, I am called to have an IV line put in. I ask to be able to put on my robe first. Apparently the nurses have never thought out the logistics of trying to remove one’s bra with an IV needle lodged in your elbow. I can tell you: it is very challenging. Always put on your robe first.

The nurse has trouble finding my tiny, dehydrated vein. It’s been 9 hours since I last ate. I’m tired. As the woman pokes and prods with the needle, I start to feel dizzy from the pain. The next thing I know, I wake up in the arms of a lab tech who caught me as I fainted. Fortunately they’d gotten the IV in, though, so a bit of glucose later, I’m fine and finally ready for my scan.

I’m old hat at the scans by now. I know when to expect the hot flash of contrast fluid being pumped into my veins. I can hold my breath and be as still as if I’m dead, sliding into the crematorium-like tunnel.

Jorge picks me up at 4. I get into the truck, then crumple. I’ve been strong all day, not a complaint, but now it’s too much. I sob from exhaustion, from hunger; I cry for all the sad stories I’m now carrying, but mostly I cry out of humiliation. I want to be a person again, not a patient. My husband strokes my head, promises to take me for pizza, and I reassemble myself. After all, what choice do I have?


Joan said...

Gwyneth, this is so moving. I lived your experience as you told it. Let's pray that the president comes up with something that will ease the plight of the sick poor.

ghkcole said...

Please stay well, and thank you. Love. What more can I say?

Anonymous said...

I came here through Gayle's blog. I am so sorry for your experiences. Sadly, we have no such facility where I live that comes close to providing services like Charity does.

We've been without insurance since 2005 and I pray each time I feel the slightest twinge that it's not breast cancer; I'm afraid to get a mammogram b/c the cost of care would bankrupt me. But what choices do we have? I have to be here for my disabled child.

I'm rambling. What I really wanted to say is that your story hit a deep chord with me. Why do we allow anyone with insufficient financial means to be treated as "less than" at all? If only there were a way to legislate humanity. *sigh*

Cristina said...

It sucks that you and others have to go through that in America. They have beter healthcare in prisons. I also hope Obama does something about this. He needs to stop compromising with those politicians that are getting paid off buy insurance companies. I hope you feel well and stay well!

Katie said...

Gwyneth, You are the strongest woman I know. I am amazed by your candidness and the power of what you just wrote. Thank you so much for sharing this. xo xo xo Katie

dc writers group said...

Gwyn...thanks for sharing your story...I can't imagine what it must have been like for you.

Money always seems to come first...than the patient. I have had to fight with insurance companies to get my bills paid during my ACL surgery. The insurance company claimed that I did not need some of the physical therapy that my doctor was prescribing...interesting that the insurance companies have now become doctors...

I have health care and every time I go to the doctors, I am scared that my insurance company will reject my bill. It has happened on numerous occasions where I have to plea to them to get something paid...and it takes MONTHS to resolve. It happened twice to two people that I am working with while they were pregnant...the insurance company said that they were dropping them from their coverage near the end of their pregnancy. Luckily one of them was returning to the Czech Republic and did not plan on giving birth here...I don't even want to list anything that is wrong with me in personal history at the doctor's office...because I am scared that something I will say will get back to the insurance company and they will say maybe what I had was a pre-existing is stressful just going to the doctors...its ridiculous. .

Recently, a member in our family was diagnosed with colon cancer...the doctor's thought she might have cancer...but it took MONTHS for her to get an appointment.

I don't understand what is happening to should be a basic human right...

dc writers group said...

One more thing, Gwyn..I really appreciate that you shared such a difficult time in your life. You are really an amazing person...and I truly look up to you for what you have done and achieved. You inspire me...take care of yourself. I hope that all is going well.

John said...

Gwyneth characteristically didn't want to worry us and made light of much of this at the time.
She could also have told you that until a few weeks before her diagnosis she had had excellent health insurance her whole life. But then she graduated leaving behind her college health plan and did not yet have a new job. So many people fall through that kind of crack in this country.