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Thursday, October 8, 2015

Ongoing Tsuris With Iron Infusion

I’m tired. I mean…my ass is dragging. I started noticing it in the spring, and it’s just slowly gotten worse. Last December, when my husband and I moved into this house, he and I loaded and unloaded a 22 foot moving van by ourselves. And, in fact, I had more energy than my five-years-younger than me, former jock/marathon runner husband. Heh.

Not any more.

Yesterday I went to the dentist and had my dentures re-lined, and boy, do they fit much, much better. Outstanding. And the appointment took about five minutes.

After that I went to a local Starbucks, got a coffee, and spent two hours researching and writing a blog post for a client.

Then I had some lunch, I splurged and went to Panera, I love their food, especially the chicken Thai salad with peanut dressing. Num. My husband did not like their food.

Then I came home, grabbed my Kindle that I had forgotten, and then went into town and did laundry. I did two triple loaders, so six loads, of laundry. Three days ago I did my bedspread—that poor Snuffy had drooled all over. His mouth needs work—and three loads of whites—so all the laundry is now done. I hadn’t done laundry in about a month. LOL I don’t have as many dirty clothes as my husband does. If I don’t sweat all over it or spill on it, I hang it back up. Your clothes last longer not being exposed to those harsh detergents, plus? It’s a lot of work washing the same shit over and over and over again every few days.

I folded it, then went to the grocery for some yogurt—I’m obsessing on the new Dannon Light and Fit caramel apple pie yogurt and my local grocery is the only place I can find it. They were on sale, 4/$4.00, so I got eight, and one vanilla, and one Chobani 100 passion fruit. In case I might want something different. :-)

Then I came home, fed the kitties, freshened their waters, and then sat down on the couch to read. I woke up about 10:30 on the couch, foot recliner up, chin on chest, Kindle in my hand, drooling. I fell asleep on the couch. I haven’t done that for years. But doing all those errands kicked my ass. Just SO tired.

Last Thursday after therapy I went to the ER to see if I could 1. Get an iron infusion or 2. Get a referral to a hematologist.

As I sat at the light waiting for it to change, I could have made a left to go home just as easily as I could go straight to the hospital ER. I nearly went left. I probably should have.

I thought well, I’ll drive by and see how it looks. It looked nice enough, no hordes of people waiting outside, so I parked. I got inside, and the waiting area was FULL. I was standing there, indecisive, when a security guy—with a gun holstered on his thigh!—asked me if I needed help. I said I was thinking about checking in, but I wasn’t sure if they could help me and how long the wait would be. He joked that “I’ve seen it much, much worse. Ha ha ha.” Yeah...funny. *rolleyes*

Then the admitting person asked if she could help me. So I said, “Well, I don’t know if you can help me….” And I told my story of post-bariatric surgery iron deficient anemia, need an iron infusion, I have my labs (and two peer-reviewed articles on that very subject), and she nodded her head and had me fill out some papers, put a wristband on me, and told me to wait in the lobby.

I waited about 10 minutes before I saw the triage nurse. She took my vitals, I told her about my previous history, explaining, for the zillionth time about choroidal melanoma (it’s so rare, most healthcare providers, or anyone really) has ever heard of it, I noticed that people are turning to look at me, patients, nurses, and doctors alike, after I mentioned "cancer" and "eye" together; then gave her a list of my doctors, drugs, and supplements, and then a diagram from my DS surgeon showing how the DS is structured anatomically (see below). She looked at it and said, I shit you not, “Oh. The bypass,” referring to the RnY, which this most decidedly IS NOT. Not even close. I had to ‘splain it to her. My experience with ‘splaining to healthcare professionals, is that hey tend to cop an attitude because what the hell could I possibly know about medicine, an untrained professional?  (No, but I LIVE with it every day, so I might *possibly* know something, eh?) I don’t know what it is. I try to be friendly, courteous, gracious, saying please and thank you, if you don’t mind, and smile, smile, smile. Maybe I need to be a bitch? I don’t know.  So after that, I was moved to another part of the ER. So far I hadn't even been given the pretense of a curtained "room." Just right there in the aisle in front of G*d and everybody. They were full, so all these conversations were taking place in front of other patients and medical professionals. I wasn’t thrilled, but in my position, I’m not able to make demands. I was thinking in particular of the armed security guard. I’ve seen people who raise a stink get escorted out of the hospital by these guys. Not this hospital, but others, in the past.

So then this dude who looks likes Einstein and also a little lost, comes over and tells me he’s the doctor, they’re going to order some labs, and go from there.

So I get moved to another part of the crowded ER and a nurse comes in to take my blood. Just right where I was, in front of a curtqained exam “room,” in the “hallway” in a regular chair. We start talking and he tells me he had the RnY five years ago and he passed out from low iron and fell through his shower door, cutting himself bdaly, and having to go to the ER. He said he had been over 500 pounds. He looked like he was pushing about 300, so he’d kept most, but not all, of it off. But the important thing was he got me. Right up until he said, “they’ll give you some pills, hon, that will fix you right up.”

Sigh.

Maybe I should just write a letter with my needs and why with attached documentation and just pass it out, I swear to dog.

Back out to the lobby for more waiting.

In 10 minutes, I’m called back in to go over my insurance. “You have Blue Cross, right?”
“No. Medi-Cal.”

It’s like I didn’t talk to admissions at all, or they didn’t update their computer, or whatever. I did my part, but as usual, I’m the kiss of death for health care going the way it’s supposed to. Is it just me? Or is it everyone?

We get it sorted out, back to the lobby.

Ten minutes lter, Einstein takes me to the side of the hallway in front of the security desk, (HIPPA violation??) with the guard standing there, and tells me my labs look “fine” and that there is nothing they can do, they don’t have any hematologists they can refer me to. He then says I should go to XYZ hospital because “they don’t take Medi-Cal.”
“I don’t know where XYZ is.”
“It’s in bumfuck Egypt.”
“I don’t know where that is.”
“Well, they don’t take Medi-Cal there.”
“They do not?”
“NO, they do not.”
“They don’t take Medi-Cal?” He nods. “Why,” I say, “would you refer me somewhere that doesn’t take my insurance?”
“They do take Medi-Cal.”
“But you just said they don’t. Which is it?”
“They do, they do. You need to go there. There’s nothing we can do for you here.”

He handed me my labs and in a fit of pique I crumpled them up, put them in the trash and said, “What a waste of my time.” And I walked out. (I did this as in a dream--no aforethought, just action.)

In my own defense, I have recent copies of my labs already. I’m sure whatever they had done was close to what I already had.

It’s like…it’s like I hadn’t talked to any of those people about my concerns. “I don’t know if you can even help me…” I said this to every person I encountered there in the ER. Or have we partitioned work out to such a degree that one person gets the drinks, one gets the salads, another takes the order, a fourth brings the entrée, and then a totally different person brings dessert, and then the busboy brings coffee. You see what I’m saying? And none of them talk to each other. They only do what their part, or link, of the chain of events is necessary, nothing more. I felt like every step of the way one or all of them could have said, “It’s not my job….” And they would’ve been right.

So I guess what I need to do is go through the phone book and call every single goddamn hematologist in a 100 mile radius and see if they’ll take me. I don’t need a referral as I have straight Medi-Cal. Which reminds me, I need to call them to find out why they changed my account and gave it a new number and why I’ve received nothing in the mail including a new card. WTF?

And I’ve now spent three days trying to get a colonoscopy scheduled. I was given a referral by the new doctor I saw this week  (on his prescription pad) to a gastroenterology group, along with the phone number, no address. I called for an appointment, they need a copy of my records before they’ll schedule me. I called the referring doctor’s office yesterday and ask if they’ll fax over my medical records as requested, and they say they will. I called the GI group an hour ago and they still don’t have them. So I faxed over my copy of the referral along with my basic info (name, phone, bday, address), in hopes to get an appointment scheduled. I've not heard anything yet.

I’m telling you, this Medi-Cal stuff is almost like having a full time job; that’s how much time I spend on it sorting shit out. How do undereducated and/or ignorant people handle this? No wonder they have armed guards at health care and social service offices. They make it difficult, confusing, and labyrinthine, and people need help with often serious health issues, and you keep bumping into wall after wall.? I can see how a less patient or educated person could lose their shit easily and quickly. I know I have been occasionally tempted to cause a scene. It's that frustrating. You need help, and no one will give it to you.

Is this what Obama had in mind when he wanted everyone to have access to healthcare? Because the access part is not working. It is a HUGE pain in the ass. And if you already don’t feel well? It can sometimes feel insurmountable. And that’s how you end up with people in the ER with gangrenous feet that need to be amputated because they couldn’t navigate the bureaucratic maze that is an impediment to getting a small health issue taken care of until it becomes a big issue and next think you know? Off comes your foot. That’s an extreme example, but I’m sure it happens all the time.

I have nothing scheduled for today, so I was going to spend a day resting and relaxing but it doesn’t look like that’s going to happen. I need to spend it on the phone, looking for the healthcare I need. Sigh.

That’s my story.

This is the business card my surgeon gives his patients to give to other healthcare providers. His contact info is on the reverse.

4 comments:

  1. Do you know what your hemoglobin is? I don't know if this will help but I was just released from the hospital today, I've been there since Sunday. I went because of agonizing foot pain and a haziness I couldn't shake. Like you, I have to explain the DS 20 times - I always start with "It's not gastric bypass" which seems to get their attention.
    They ran my labs and then they admitted me to ICU. My hemoglobin was so low I was considered critical. They began blood transfusions Monday morning and they went almost around the clock until around noon today. I suspect my anemia was far more critical than yours is though if the hospital didn't admit you. Even my paperwork read "life threatening anemia (iron deficient)". What I discovered got their attention was not me telling them I was tired but that my thinking was so fuzzy that I was continually disoriented. They didn't even ask about my insurance - they wheeled me away to ICU immediately and dealt with insurance later,
    I hope you get relief but also hope yours isn't as bad as mine. They didn't even consider infusions - I had 7 or 8 transfusions, one after the other.
    My hemoglobin was at 3. After all the transfusions, it was 10.4 but it's dropping again rapidly so I'm having iron transfers first and then will have infusions later.

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  2. Crap, that's horrible. I hope you're on the mend soon. My hemoglobin is 11.6, rbc is 3.76. But labs look fine!! #!$@ good luck

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  3. Meh, it is what it is. I'm back in the 9's today. With your hemoglobin in decent shape, it will be hard to get ER attention. I was thinking if it was lower, you could try the "disoriented" approach because they won't turn you away with that being a chief complaint and once you can get admitted, they do just about anything.
    It isn't you regarding the repeated questions. I had no less than 6 people in my room daily and none of them knew what transpired with the other 5. Ever. I even asked if my EMR was not being updated and I was told it probably was but they preferred to ask directly. I suspect it's to get continuity in responses because it's certainly faster and easer to read the record but then you can't gauge the patient and answers.
    Can your surgeon provide a suggestion or even require hospitalization?

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  4. Well, I've responded 3 times, and it never gets saved, so this is it. I hope you feel better, soon.

    SJ

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