Wednesday, September 10, 2008

The Hip Bone's Connected to the...Thigh Bone (isn't it?)

And so I've been having some hip pain for the last few days, which seemed to feel worse as I either twisted while putting weight on my left leg, or tried to roll over in bed.

Normally I would chalk it up to random soreness (like the pain in my shoulder I think comes from sleeping on my arm in a wonky manner), but I refuse to blow off pain in my hips, especially after the ordeal in 2005 which left me with pelvis crumbs, requiring a month-long stay in the hospital after seven months of useless and ineffective treatment, and required a move to an apartment without lots of stairs.

I was going to call my nurse practitioner about it in a few days if the pain hadn't gone away, but at infusion today the chemo nurse asked if I was having any pain. So I admitted that I was, that it wasn't bad, but I was wondering if I should get an ex-ray or something. So I spoke to the PA, who set me up with ex-rays right away. They got a wheelchair for me--it was very wide; I felt compelled to make beeping noises as we rolled down the hallway--because they didn't want my hip to blow out as I was on my way for a diagnostic test.

The results did show some "activity." Unlike the last time, the part that's becoming a little spongy is the spot connecting the main part of my left femur with the ball joint that fits into the socket of the pelvis. I think there's also some damage on the top ridge of my pelvis. The PA told me I'd need more precise scans--which I am hoping do NOT include a CT with contrast dye because IVs are eeeeeeeeeeevil--and I'll be set up with an appointment to see the orthopedic surgeon. I saw her once before when I began treatment at U of M. There was noting to be done about my pelvis then, but there might be something to be done to "shore up" my femur.

I've got a cane now because I really don't want to tote a dorky old-person walker with me wherever I go. I need one of the hot-rod walkers that have the hand-brakes and built-in seat.

Labels: , , , , , , , ,


Monday, February 06, 2006

I Am Not a Ragdoll (or, Use the slide board, for the love of God!)

On floor 6A of the hospital I underwent ten sessions of radiation, any number of tests including X-rays and MRIs, and a liver biopsy, which were all terrible in their own way, but I'm going to spend a little time talking about transportation of people with hip fractures.

I know I've mentioned the unbearable, excruciating pain. They had to prescribe liquid morphine so that I could take something to make being moved bearable. There was also some kind of intravenous thing they were giving me that put me into a twilight state that was blessedly numbing. What they do to move a patient onto the transport table is that they get four to six people to grab the extra sheet under the patient (called the "draw sheet"). Everybody grabs an edge of the sheet and then they try to coordinate efforts and heave on the count of three. I found this method to be invariably awful.

On one of the occasions when I was to be moved, I started to cry and somebody promised that a "slide board," which is a slippery body-length board which the patient and draw sheet can be slid over, would make everything better. When the nurses and assistants and orderlies used the slide board, it worked amazingly well. There was no friction. My legs moved at the same time as my hips which moved at the same time as my upper torso...Unbelievable! The people in radiation were good at moving patients without causing any kind of pain (they're used to dealing with people who might have broken spinal things), but for the nursing staff on 6A to do it was amazing. I begged them to use it every time, but there were one or two people who insisted it didn't work or didn't make things any easier. The last example of this was the "kindly" man who directed my transfer when I had to go get my liver biopsied.

John was leaving to go back to Chattanooga, and I was already very sad about that. I don't see my brother often, and when he made plans to come and visit me in Detroit, I'm sure he didn't intend to spend the time visiting the hospital and packing books in my apartment. He looked at me funny when I said I was sorry his trip wasn't better.

Then, when the person directing my transfer made no moves to use the slideboard, I lost it and began sobbing uncontrollably, which never helps with the pain issue. "Now you have to relax," I was told. "It makes it worse if you don't relax."

What makes it worse, a**h***, is being told to f****** relax when you're about to heave and plop me onto a table, while telling me that if it hurts, it's somehow my fault.

Being moved was awful. I cried long after the pain subsided, though. I sat in the surgical waiting/recovery area and sobbed. Everything was awful. I hurt; John was leaving; I was frightened of the biopsy.

I was even more frightened when I found out that this is not something they knock you out for. It was an ultrasound-guided procedure, and I guess they needed me conscious so that they could tell me to not inhale at a certain point, since they insert the biopsy needle in between a couple of ribs.

That's right. They stab you in the chest while you are conscious, and ask you to please not squirm around as they're digging for the right spot.

"Don't worry," the anesthesiologist told me when I appeared apprehensive. "We'll give you a fentanyl drip and you won't feel much discomfort at all. He was not happy when I told him I was already on a fentanyl patch...I guess either he gave me something completely different or reduced the dosage, and the biopsy hurt like hell.

I will never again submit to such a procedure. They'd best not plan anything involving stabbing and searching unless I am totally unconcious for the procedure, because I will resist to the utmost of my ability, particularly if they try to claim that I "won't feel a thing!"

Liars.

They had to try separating my ribs twice, because the first time they jabbed, the needle bounced off. Then, after more careful poking and prodding with the fingers, they jabbed me in a gap between two ribs and inserted. They told me internal organs don't have nerve endings, so I shouldn't feel pain, but I swear I could feel the resistance as the needle encountered different kinds of tissue. So I experienced pain from the initial stab wound and knew exactly when it encountered the liver. I could feel it, and they had to work the needle around a bit to find the "right" spot indicated by the ultrasound.

After it was over and I was back in my room, the radiation team came to get me, but I refused to go. I'd had it; I didn't want to be moved any more, and I exercised my right as a patient to refuse treatment (they did make up for it later).

The next day, the doctor and his accompanying doctorlets were shocked to find out that the biopsy was very painful and that my chest still hurt where the needle went in. To his credit, the doctor was very concerned that I seemed to have anxiety about being seen by them, and that they weren't really able to do much to help me. I said what would help would be if they could always use the slide board to move me, so he agreed to write it as an order in my chart. Being moved was much better after that; I no longer dreaded being moved, I didn't have to take the liquid morphine as frequently, and I started having some positive feelings about the doctor and his interns.

Also, I stopped feeling shy about being moved with the slideboard. I vigilantly reminded people that it was there, and that they were to use it or I wasn't going wherever they wanted to take me.

To be continued...

Labels: , , , , , , , , , , , ,


Saturday, February 04, 2006

Admission: aren't hospitals supposed to make you feel better?

Brian contacted Lita to let her know what was going on and that getting to my radiation appointments was going to be a problem. She wanted to get me admitted to the care of radiation oncology, but to do that I'd need to come through the Emergency Room at U of M since the prospect of doing any normal kind of transportation was out of the question.

The trouble with my Westland apartment is that Westland is smack dab in the middle of Oakwood hospital territory. Local ambulances were going to want to take me somewhere nearby. EMS people who normally deliver to U of M are not going to want to travel all the way to Westland to pick somebody up. After no small amount of calling different EMS companies, Brian found one that was willing to go out of the way.

The EMS people came and discussed how to get me out of the apartment, and ended up getting help from the local fire department. The trick was going to be moving me over onto the body board, which didn't quite fit around the corner from the bedroom to the hallway, so they were going to have to tilt it sideways. (They did a draft run before loading me up.) The other problem was that I was completely unable to scootch myself over from the bed to the board, so they were going to have to manhandle me over. There was some discussion about whether or not to just take the sheets, which caused me to panic unreasonably since I love those sheets, which have a very high thread count. Finally I think they got a sheet of their own and jiggled me on one side then the other (not pleasant), and then moved me on the heave of three, which was awful, I saw stars, and whimpered from the agony.

Agony. It's a word I will probably use a lot. I think it might come across as hyperbole, but I do not exaggerate.

Being tilted sideways was not only painful, but it was frightening as well. I was strapped down fairly well, but couldn't help worrying that I would fall off the board. The EMS people tried fairly hard to keep me level on the stairs, which I appreciated, and when we got outside they were able to move me to a stretcher. It was snowing, and I thought of the poem recited by Joy Gresham in Shadowlands where she talks about soldiers seeing "..with unwounded eye/For once a gentle thing/Fall from the sky."

In the emergency van they hooked me up, loaded me with drugs to keep me from feeling too much during the trip, and took me to Ann Arbor.

I think I was probably in the Emergency area for a long time, but I don't really know. What I remember most is having to go to be X-rayed, where I felt that the technicians wanted to cause me unreasonable pain. In order to get good films of my hip, they tried to do a "through-shot" which involved lifting one leg and trying to take the X-ray under the leg. Brian had to help hold the leg up, since I just couldn't do it. Then they decided that wasn't good enough and insisted I be turned on my side. I insisted they not do it, but I lost out. When they turned me, I actually screamed. I decided X-rays were bad, tests were bad, and I didn't want to ever have any more. Moving to and from the X-ray table and the transport gurney were also bad. It seems to be impossible for four to six people to keep legs and hips and shoulders and everything else lined up while moving a body. To somebody with a broken pelvis, this means that being moved is going to cause hideous pain.

After deciding, "yup, she has a broken pelvis" and "yup, she can't get around without severe assistance" and "yup, her vitals are a bit screwey and need to be watched," I was admitted to the hospital proper. At this point, more tests were warranted since I had abdominal tenderness, and the doctors were concerned I might be in the midst of some kind of spleen/gallbladder issue, so they wanted to send me down for an ultrasound, at which point I began to cry, which hurt my hip.

The nurse was livid, and told me I didn't have to go if I didn't want to. She told the doctors so.

I don't have to go? Cool! So I refused to let them transport me--which I had already decided was evil and unbearably painful, what with being tossed around like a sack of potatoes--for something I wasn't convinced I had.

So the doctors came to me and said the test was vitally important, and they had a portable scanner they could use.

If they had a portable scanner, why couldn't they propose using that on someone who finds moving to be insupportibly agonizing? Grrrrr... Incidentally, when they did bring the portable scanner (which the technicians complained about no end--apparently it doesn't do everything automatically like their shiny new stationary equipment down in the ultrasound area; poor babies), they had another stop on my floor anyway.

Having the test required no food or drink, which led to my next lesson in Life in the Hospital: shift changes can result in some incredible stupidity.

To be continued...

Labels: , , , , , , , ,


Tuesday, November 22, 2005

More Questions With No Answers

Will I start to feel better soon?

Will the new pain medication keep from making me ill so that I don't have to worry that the involuntary muscular spasms from heaving the remnants of last night's dinner and this morning's dose of medication into the sink will cause my hip agonizing pain?

Will I give up trying to go up and down the stairs altogether? I thought about cancelling the PET scan today because everything is so hard. I did actually cancel my first appointment for today and sent my mom instead to pick up a new prescription for oxycontin, which gives me something in common with Rush Limbaugh, who also got people to get his drugs for him. Getting down the stairs and into the car was hard. Luckily the hospital has wheelchairs, but they had to move me several times. First they loaded me into a chair in the scanner trailer (sort of like the one I thought was going to take me to Iowa for weird medical testing in some corn field), then they made me get out of the chair and use the little peoples' room (apparently the isotope collects in the bladder and obscures what they are trying to image), then load me onto a narrow table. After they were done, there was an ER nurse to help move me back onto the wheelchair.

I wonder what they saw in the image to go get a nurse.

I wonder how fragile the damaged bits really are. Brian wonders this, too. He said he looked at the ex-rays today but doesn't really know what it means because nobody has explained them.

The reason people shy away from asking things is that they are afraid of the answers. This I understand.

Labels: , , , , , , ,


Thursday, November 17, 2005

Things I have in Common with Grandma

I'm about the same height. We both wear size seven shoes. We both take lots of medications. Both of us are currently having some trouble getting around, and neither of us is going to be completing our Olympic floor exercise routine any time soon. I think I inherited Grandma's forehead. We both really dislike physical therapy. I collect dolls like Grandma does. And I fully confess I got the idea of decorating my Christmas tree in white and gold from Grandma, who did it first.

I have a broken hip, now, too.

My fall the other day put a fracture in one of the weakened areas of my pelvis. I called my pain management/physical medicine doctor (Dr. Nadjarian) this morning, who stopped short of calling me an idiot and insisted I come in for ex-rays at the emergency center that's downstairs from his office. He told me to call a cab.

I was leery, but the cab dude turned out to be very nice. He helped me to the car and turned out to be a huge proponent of librarians. In fact, he used to have a job selling books to librarians. "Those librarians can be crazy to hang out with," he said. "They get pretty wild." I commented that I think librarians tend to feel compelled to rebel against the stereotype.

"It's true," he agreed, then went on an impassioned diatribe about how libraries are not sanctified spaces of higher learning any more and he gets so angry when he sees "these kids today" yakking on their cell phones at the library. I hear ya, mister.

After a brief and confused trip upstairs, I was made to understand that I should check in at the emergency desk downstairs to be evaluated by the ER doctor. At this point Brian surprised me by showing up at the medical center; when he got my message he told work he was leaving to go to the hospital...I'm not too sure that is going to bode well for his job, but I was glad he was there with me. The ER doctor moved my leg in various directions and observed my grimace of pain and sharp intake of breath in a very clinical fashion. Then they sent me for ex-rays. (The radiology people commented they could still see the barium in my system from the CT scans.)

There probably isn't much that can be done surgically to address the fracture; it's not the kind of injury that pins or false joints can repair. Unlike Grandma, I do not need a hip replacement. They gave me crutches to walk with, advised me to keep my weight off of it, and Dr. Nadjarian said he would call UM and try to set something up with an orthopedic specialist there since I'm going to be transferring my oncology to UM anyway.

It looks like I will be spending some more time at home for a while. I just got cable and will be able to watch Trading Spaces just like I get to do at Grandma's house.

Labels: , , , , , , , ,


Wednesday, November 16, 2005

University of Michigan Hospital just called

And it wasn't just to say they loved me.

I have an appointment November 29 at 4:00 p.m., to which I am supposed to hand-carry all of the films associated with my various mammograms, scans, ex-rays, and what not. I'm not entirely sure how to go about getting all of them, since I'm not sure the doctors who prescribed those tests necessarily get the actual films. Sigh.

Labels: , , ,


Wednesday, October 26, 2005

F*CK Insurance: a long, boring rant nobody wants to read

Firstly, I am honestly grateful that I even have health insurance, don't get me wrong. If I didn't have reasonably good health coverage, I would not be able to pay my bills and would probably have ended up moving back in with Mom and Skippy, who, while they love me--and I them, would drive me completely stark raving bonkers within a week.

I was notified in mid-September that the hospital with which my primary care doctor's office was affiliated, has decided to pull out of my insurance plan, which meant that I was going to have to choose a new primary care physician. I was not able to act on matters immediately, what with jury duty, trips, a conference, and generally being overwhelmed at how difficult it is to get things done when walking is so hard. Finally the insurance company indicated I would have to select someone by October 9. Not a problem, I thought. I went to the M-Care website and selected a PCP who is affiliated with the same health system as the doctor I'm seeing for my hip. A wise move, I thought.

My first visit to that office, already described here, was miserable. I ended up getting no help and was instead chastised for not having a health history on file with them. And given another prescription for an arthritis medication. I filled the prescription, then stuck it in one of the medicine cabinets at home where it will sit, unused.

A week later I decided it would be a good idea to get treatment for a nagging urinary tract infection, so I called and requested a same-day appointment. This time I saw a physician's assistant. This time the person examining me seemed interested and concerned about my symptoms. This time (oh how novel) he seemed to be troubled by chest pain in a patient who has a history of breast cancer.

"Do you have bone mets?" he asked.

This is not the question I really wanted to think about. I don't have an answer, and was afraid to even think it. Breast cancer, when it metastasises, often shows up in the bones, causing bone and joint pain.

"When was your last bone scan?" he wanted to know.

My last bone scan was done before my surgery, I think in October 2003. "I've had Xrays," I said. Maybe Xrays are magically good enough.

He gave me a prescription and instructions to call the hospital for a bone scan, which I agreed to do. He also wanted to know if I was going to be seeing an oncologist. At this point I got a little upset, because I had been trying to call this new doctor's office to get a referral to see Dr. Coello, my oncologist.

When you call the main number, you are told to press 2 to speak to the referral coordinator. Well, when you press 2, you don't actually get to speak to the referral coordinator. You hear a recording which says for all new and ongoing referrals, to hang up and dial the main number, then press 5 to leave a message for a physician. So I hung up, dialed the main number, pressed five, and when I tried to explain to the receptionist that I was having trouble getting a referral, she said, "Hold on," and then transferred my call. She transferred me to the referral coordinator's line, where I got to hear the message instructing me to hang up and dial the main number.

Lather, rinse, repeat.

I finally spoke to the receptionist and explained that transferring me wasn't helping, so she said, "Let me take a message and I'll give it to the referral coordinator." I am unconvinced that it went anywhere.

When I described this to the PAC seeing me that day, he got really disgusted and said that sort of thing shouldn't happen. He also told me that I would not be able to get a referral to see the person I have been seeing for the last two years, because Oakwood has oncologists on staff. My choices are:

  1. find a different PCP who is part of the same network as my current oncologist
  2. find a totally new oncologist who doesn't know me
  3. pay exorbitantly to continue seeing someone without authorization; hope that it's not too expensive


Friday I went to see Dr. Coello, and when the lady at the front desk asked me for my referral, I completely lost it. I haltingly told her that I had been able to get one, and spent the next ten minutes weeping in their waiting room. They decided to let me see the doctor and wrangle the payment issue later. When I told him about the insurance issue, he was annoyed, but reassured me that his care of me was more or less a technicality now, since the chances of anything have spread are so remote as to be nearly impossible. He then wanted to know about my hip and chest pain, and suggested a "myotherapist" in Southfield who helped him with sciatic pain a few years ago. It really works, he claimed. It isn't covered by insurance, but it will be like a miracle.

Then he concluded that my chest pain was related to arthritis, and prescribed a coritcosterioid. I felt slightly better over the weekend; although the corticosteroid didn't seem to help with my chest, it made walking a little easier.

Monday as I was driving to work, I started having difficulty breathing normally. I can not take deep breaths because of the chest pain. I called and left a message for Dr. Coello. After looking at several alarming websites about potential causes of chest pain and shortness of breath (congenital heart failure, or maybe asthma. Maybe a blood clot. Or maybe severe anxiety), I called the primary care place to come in to see someone again, rather than waiting for the appointment which was scheduled for Tuesday.

I was given an appointment with the doctor I saw the first time I went there. As I was sitting in the waiting room, I noticed that well over half the patients consisted of unwed teen mothers and pregnant fifteen year olds.

The doctor was surprised I was still in pain and insisted it was musculo-skeletal. She listened to my lungs and got irked that I would not take deep breaths. She wanted to know why my paperwork had not been transferred yet, and told me that she couldn't do anything. "I am here only to help those people with sore throats and urinary tract infections and things like that they'd go to the emergency room for."

Silly me. Chest pain and shortness of breath is obviously not an emergency condition.

So I asked what I can do about "musculoskeletal pain" if anti-inflammatories have not helped. "Are you just going to prescribe another arthritis medication that doesn't work?" She came back with a prescription for Tylenol 3 (it does help with my hip, but not so much for the chest pain) and spent the last five minutes of my appointment repeatedly telling me to transfer my paperwork, keep my appointments, and see one of the doctors who is going to be at this facility longer than she will.

"Do you understand? Do you understand me?"

Good god. Don't speak to me like I'm an idiot; I comprehend that you are a patronizing [insert derogatory term here], have no interest in or ability to help me, and coming to this office at all is a complete waste of my time. These people are more concerned about paperwork than in dealing with somebody who has current problems. I understand wanting a health history, but how does the fact that you don't have information about every bladder infection I've ever had keep you from attempting to address what is wrong now?

Yesterday I got a call from Dr. Coello, who is very concerned that the medication he prescribed didn't help.He was surprised that the insurance switch has already happened; nobody told him on Friday. He wants to help me find an oncologist in this area and asked me to read off some names for him. It is important that I get a bone scan.

I am rather freaked out about the specialist being worried.

He is going to send his records to the PAC who prescribed my upcoming bone scan; I'm not sure I'll necessarily be going back there. They're used to dealing with knocked-up teenagers and wheezy old people; I don't want to go there EVER AGAIN.

Tomorrow I will ask the pain dude in Canton if he could recommend any of the people at his facility, or if he's familiar or could ask around about any of the oncologists on my list.

Also, F*CK Oakwood. My other primary care physician's office didn't refuse to give me referrals to out-of-network doctors. That's probably why they're no longer part of my bloody insurance plan.

Labels: , , , , , , , , , , , ,