Bonnie and I have spent most of this week going from doctors office to doctors office across the river in Wilmington and on the phone trying to get doctors in Boston and Wilmington to talk to each other. All of this to get 2 vital scans completed and a ten minute cataract / lens replacement surgery approved.
Rube Goldberg cartoons illustrate how current system of medical records and health care institutions "work" together.
Panning from our broken health care system back to the human being, the "patient", as Bonnie is called; In the last 30 days Bonnie's sight has decreased by 3 lines on the eye chart. The eye surgeon and nurse both comment at how surprising and precipitous Bonnie's loss of sight is.
Bonnie can no longer read. Even when she puts her nose to the paper or screen she can barely make sense of what she sees. She is in pain due to the glare of daylight. She wears an eye patch over her left eye at home and ultra-dark wrap-around goggles over her glasses when we go into daylight. She reports that her sight is getting worse day by day. Bonnie is remarkably cool for a person who is truly going blind. Only once has she confided what it is like to "live in a smaller and smaller private world. It shrank when I lost my hearing and now I am going blind."
If both of us were not able to work full time on coordinating appointments, tests and getting medical records from one office or hospital to another, and helping the doctors "all get on the same page", Bonnie would simple sink beneath the waves of her many medical issues.
Bonnie has been having headaches every day for the last 6 weeks. It took close to four weeks for an appointment at the "Open MRI" for a scan of Bonnie's skull and brain. The doctor wants to see what may be the cause of her headaches.
Just two days before the MRI, in the pre-exam telephone screening, Bonnie learned that NHRMC needed to have the medical records on her cornea transplant surgeries done at Massachusetts Eye and Ear in Boston last year, BEFORE she could have the MRI in Wilmington.
It is like herding cats to get medical records released and then for Doctors in different hospitals to communicate with each other. This time Bonnie had to get the right assistant and Doctor at MEEI in Boston to agree to exchange faxes: Bonnie had to sign and return their medical release form. Then MEEI had to get the right 8 pages of Bonnie's medical record into the right person's hands at the NHRMC here in NC. This prerequisite was completed with 4 hours before the scheduled MRI.
You might ask, what does a soft tissue cornea transplant completed 16 months ago have to do with Magnetic Resonance Imaging of Bonnie's skull and brain today? Ahh, the paperwork is for the lawyers, not for the patient with the headaches. Par for the course.
On Thursday, we got up at 8 AM to be at the hospital for an 11 AM scan to see if the blood clots in Bonnie's thighs, which threatened her newly amputated feet, had dissolved after 90 days of being on a blood thinner.
We arrived exactly on time, but it took 45 minutes for Bonnie to be re-admitted to the same hosptial that received over $500,000 dollars for Bonnie's hospitalizations since October. Clearly, hospitals take no clues from customer-oriented businesses or customer-facing inventions, like American Airlines Triple Platinum Flyer program or the Hertz #1 club. It is NOT like your name is on a large welcome board, listing the location of your car, which awaits your arrival, with it's trunk open and the keys and paperwork at the ready, so you simply arrive and roll.
Be clear, you are always a stranger in a hospital. In fact you are nothing, until a clerk finds some number somewhere and then assigns you the hospital's own bar-coded number, which is printed on plastic and strapped to your wrist. How better to institutionalize a person? While we wait to be "admitted", we read the new posters on the hospital walls: "Patients are the most important people in this building". These posters are clearly a declaration of someone's idealize goal, not an assertion of fact, as most any patient or nurse will readily confirm.
When Bonnie was "registered" we are escorted to another waiting room, in radiology, which is a bit of a walk for Bonnie on her walker. After another wait, she is directed to walk about one block to the other end of the hospital for her exam. When we arrive, we were told that Bonnie had been sent to the wrong clinic - "This is Cardio-Vascular Imaging, you need to go to Vascular imaging. It happens all of the time."
Bonnie was so exhausted from her walk, she had to be wheeled back to the correct lab, with time running out before her 2PM MRI appointment. Imagine how Bonnie was feeling at this point. She seemed to shrink in the wheelchair, resting her head in her hands, but she remained calm. My mind began to sputter.
The results of the ultra-sound scan showed an improvement in Bonnie's legs but there are still clots in her left thigh. She will have to stay on Coumadin, which makes her skin even thinner, and her bruises to hemorrhage under her skin. Yesterday, Bonnie lightly bumped her forearm against the arm of her wheelchair which produced a 2"x2" tear in her skin which bled profusely. Fortunately, her eye surgery will not be effected by staying on the blood thinner, as the incision is in a non-vascular portion of her eye.
Good news. Tuesday, Bonnie made it onto the eye surgeon's calendar for a cataract removal and lens replacement. 1 May is the big day. Hurray, after 20 appointments to see eye doctors over the past 3 months, Bonnie finally has hope to be able to see out of one eye.
The euphoria lasted about one hour. Nothing has proven to be that easy. We discover the Catch 22: In the pre-surgical screening we are told Bonnie can not have the surgery next Friday, UNLESS she has two consecutive negative tests for MRSA.
MRSA is a strain of staph infection that's resistant to the broad-spectrum antibiotics commonly used to treat it. MRSA can be fatal.
Most MRSA infections occur in hospitals or other health care settings. In fact, Bonnie contracts MRSA, almost everytime she has spent more than a week in almost every hospital she has been in over the past 7 years. Bonnie has spent well over 365 days in hospitals, with a compromised immune system, over the past 7 years.
So the rest of Tuesday, we work to produce a record of Bonnie's most recent negative MRSA tests. We need to get Bonnie's most recent NHRMC / Coastal Rehabilitation discharge records, to show that she tested negative for MRSA when she left the hospital. We "know" she must have tested negatively for MRSA as it was not on her discharge notes.
It takes 2 hours to get the medical records, as they are in a different building across town. Requesting medical records requires another page of paperwork. When I finally get the record, we discover that there is a problem: Bonnie tested POSITIVE for MRSA when she left the hospital on January 20, and she has not been treated for it since. Arrrrrggggghhhhhh.
Okay, back to square one. We drive back and forth from doctors office to doctors office, to see who would do the MRSA test and failing that, who would write the prescription for the tests. Finally, we got the eye surgeon to write the MRSA test prescription. Then we go to the pre-operative testing clinic next door to the hospital, where we wait for the test. Our simple "one-hour" appointment with the eye surgeon has become an 8 hour day of running hither and yon to get a simple MRSA test completed.
The next day Bonnie called the lab for the test results, but the lab would not release the test results to Bonnie, even though she has a legal right to her records, and she was able to identify herself by date of birth and Social Security Number etc. She is told the lab will only release the results to the doctor who ordered the tests, and THEN only IF his office calls for the test results. Really? Do you think this the correct reading of the HIPAA laws? No, the clerk at the lab is complying with a "higher authority" = local lab policy.
Can you see how much bureaucracy, delay, expense and stress could be eliminated with an electronic patient record system - to say nothing of saving 100,000 lives per year by reducing medical errors. If death by medical error were categorized as a disease, it would be the fourth or fifth leading cause of death in the US.
Bonnie spent the morning calling and leaving messages. This afternoon she was begging nurses to call the lab to get the test results. Bonnie could not get either the eye surgeon's office, nor her hematologist's office to call the lab for the MRSA test results. Each insisted the other office should call. I took the phone. Even I could not get the bulldog of an administrator in the eye surgeon's office to call for the test results. She hung up on me. When Bonnie called back, the office admin would not let Bonnie speak to the eye surgeon's nurse.
I told Bonnie I was driving over to Wilmington to get the test results, one way or the other, and I was leaving in 30 minutes. Bonnie worked the phones, probably fearing the path I would hew if the stonewalling continued. Finally Bonnie got a call with the test results. BAD news. Bonnie had tested positive for MRSA. She has a virulent staphylococcus infection. Good thing it is not fatal. Oh, right, it can be fatal. Good thing she is not immune compromised.... oh, never mind.
Imagine how a hospital can discharge an immune-compromised patient who continued to test positive for MRSA, and then not put MRSA on the discharge notes, nor put Vancomycin on Bonnie's prescription list? I was lax when Bonnie came home from 110 days in hospitals. I should have gone through her medical records from the 5 hospitals she was in and looked carefully for negative test results, and prescriptions discontinued, any proceedure or symptom that required follow up.
Bonnie may need another ten day course of anti-biotic INFUSIONS, before her next MRSA test. This may entail ten more days of enduring poking with a needle, TWICE a day, to try to find some place where her veins are not impenetrably scarred over from years of daily blood draws and infusions. And ten days of TWICE a day trips to the local hospital and sitting for 2 - 3 hours twice a day, waiting for the intravenous drip to finish. They wanted to put Bonnie in the hospital for the infusions, but hospitals are where MRSA is most often acquired. We have declined that notion. We shall see what the infectious disease specialist has to say.
Vancomycin has serious side effects for people with past kidney failures or a history of intestinal problems. Check and check, but since it is the only drug for MRSA that Bonnie is not allergic to, Vancomycin it will be. We are having too much fun.
In the meantime Bonnie's eye surgery next Friday, is canceled. And no eye surgery is possible until she has two negative tests in a row. Since her hematologist is out of town, we are told by his office that we have to find a new "primary care physician" to prescribe the antibiotics. We are given three names, but they will not call the doctors they are referring us to, to help us get in quickly. It is now Friday, after hours. Who knows when we will be able to get an appointment with a new doctor and then begin Bonnie's treatment for MRSA.
Okay, let's roll back a day, to Thursday afternoon and Bonnie's scans. After the ultra-sound on her thighs, Bonnie went for the MRI scan on her skull and brain.
Bonnie and I have not talked about what the doctors are looking for in her brain, as it is simply more than we care to deal with now. On the other hand, we both know that daily headaches for well over a month, are not a good indicator. We are operating with the understanding that we will deal with whatever it is, when we actually know what it is. We have come a very long way from the first time we faced a dire diagnosis after Bonnie's blood tests nearly 7 years ago. We are learning to not waste cycles of attention on what-ifs.
We arrived for Bonnie's 2PM appointment for her MRI at 2PM on time. Now we wait and wait. At 2:30 Bonnie took her prescribed meds to help her stay calm and perfectly still during the 60-90 minute scan.
At 3 PM Bonnie is called in for her scan. During the scan, apparently Bonnie's attention drifted. She moved her head slightly, so they had to do a portion of the scan over. We left at 4:30 PM, exhausted. Not from physical exertion, but because we will not know the results until Wednesday of next week. Why wait six days? you might ask. The scan was complete and can be read by a specialist in less than an hour. Ah, because only Bonnie's primary doctor can give her the results, face to face.
Correction: We heard from Bonnie's primary care physician's assistant by telephone Tuesday morning, 28 April (4.75 days after Bonnie's brain scan). Apparently Bonnie has no tumors or hemorrhages or large rocks in her skull. There is some small vessel disease that is consistent with her age and her history of treatments. We will discuss what that means when we meet with the Doctor tomorrow, but for now there is no obvious source of Bonnie's daily headaches on the MRI of her brain.
We talked to Bonnie's primary doctors office last Friday and again on Monday to try to get Bonnie an appointment with an infectious diseases specialist. Apparently only an infectious disease specialist can prescribe for Bonnie's virulent, drug-resistant Staph infection.
So far, we have waited 5 days to get a simple prescription for the normal MRSA protocols. Silly, considering that the last two positive lab tests were done in the NHRMC labs and are sitting in the NHRMC computer; and the infectious disease specialist we are waiting to see, personally prescribed Vancomycin for Bonnie when he was supervising her case at NHRMC in November. MRSA protocols are simple. The drug is one she has taken many times before. Still Bonnie has to wait.
Waiting is what a patient and family do most. It is precious time wasted, and needless stress added. If a customer-facing business like American Airlines or Hertz were to use hospital business practices and information systems, customers would leave in droves and they would go out of business.
In my spare time, I need to be tested for MRSA, given how contagious it is. The last thing Bonnie needs is a ping-pong infection.
To raise our spirits, and to get a glass shard out of my foot, we drive to Jennifer's house. We see three of our four grandchildren. What a joy. Luc and Abi jump out from a hiding place to scare me and dare me to chase them. Squeals of laughter. Zac greets his GrandBee and then he wants my iPhone to play with.
Zac has to go off to practice for his baseball league with Scott (daddy), but not before he found and downloaded a Ferrari Racing Game on my iPhone. Zac is 7.7 years old but he quickly figured out how to use the App Store on a device he has only held in his hands a few times. He is scary smart, determined and clever around computers, the baseball diamond and school.
Our 3.5 year old grandson, Lucas, did really well in his first "wee ball" baseball game. He was the youngest player on his team, by 6 months, but one of the better players at hitting, running and throwing. He has been his brother's shadow watching and playing baseball for years now. It was as if Lucas was born for his first baseball game. Jennifer was both a smart and creative Mom, to get him an exception to start wee ball this year. Luc took a big step in his transition to "big boy" status this week.
He loved having his big brother and his grandparents and parents all cheering for HIM. He has been at Zac's games, cheering for his brother for 3 years. Bonnie thinks Luc has never been happier or more fulfilled. Luc was so enamored of his baseball PLAYER status, he simply would not take off his baseball uniform t-shirt for two days and one night.
Abigail is now nearly two years old and very funny. She runs around in glee, a virtual shadow for her brother Luc. She takes turns with her Luc being held up over my head like an airplane. She is just now learning to like it. I can hardly express the joy and comfort I take in Jennifer's home. It as if the whole world of hurt goes away.
Abi goes over to take off her GrandBe's socks because she remembers that there is something special about her GrandBe's feet. After tugging off Bonnie's socks, she goes to her mother, to see if her Mom can take off her toes. Jennifer shrugs and says, "Nope, I can't take my toes off." Abi stares at GrandBe's feet in wonder and then at her own feet, her toes showing tiny dabs of coral toenail polish. Hmmmmm. Then Abi shrugs. She is off to play with a balloon. There is always a balloon in the house. The kids are in a perpetual game of indoor balloon baseball.
I got to change Abi's diaper and put her into her PJ's. What fun. Now she expresses a color preference as to which PJ's she wears to sleep. Pink tonight, not yellow. I put her to bed with her blanket and her dolls and a bear. She hugs them all up and looks at me steadily with curious eyes. She is always looking for what is next. I stay and touch her face and then I ask her to wave to me and say "nite nite". She does and tonight, like most nights, she makes not a sound after I leave.
Seeing Bonnie and the grandkids each play with each other makes pushing the medical rock back up the hill day after day, seem worthwhile.
Jennifer and Scott are wonderful, deeply involved, and yet relaxed parents. Amazing Grace, these children and grandchildren. Bonnie adores Jennifer. Jennifer looks after her Mom in dozens of ways.
I pray for a kinder world where all children drink clean water, and have the love of parents and grandparents. I pray that each has food and shelter and joy in their hearts.
Do you think Buckminster Fuller was right? There are enough resources on earth to enable such a world, if we only take proper aim and then do what is needed to bring forth such a world.
/Daniel for BanD
as i'm reading, i'm aware everyone who is reading this must also be shaking their heads in disbelief and frustration. and just a few paragraphs later, we're thankful to be alive. how inspiring. thanks, daniel and bonnie. love, sally
Posted by: Sally | April 24, 2009 at 10:56 PM
ugh...................................betsy
Posted by: betsy | April 25, 2009 at 03:37 AM
Daniel, Bonnie---this post could best be put under the last one as it's about caregivers and the dying process. It's about that catagory Daniel so well opened up about caring for oneself. Right now I am supporting two women as they prepare to pass over. I'm currently making prayer ties for one as well as working with a huge group who support the other in helping them understand how to care for themselves during the last weeks. On my vision quest I really learned a lot about the power of prayer, eating and drinking deeply and well by support givers. On a quest, when those going up the hill or into the desert refrain from eating and drinking---the support team below keep a fire burning (for warmth) and they prepare and eat lots of good foods (especially foods they know the quester loves). I thought of how in our culture when someone is dying friends bring food to the family. And yet, in our culture we spend a GREAT deal of time "getting the dying person to eat...eye droppers of food, custords, cakes, etc.) EATING WHEN YOU ARE READY TO PASS OVER IS A REALLY REALLY REALLY BAD IDEA. And yet it's what we do. Often all the food brought over goes to waste as caregivers "loose their appetites".....REALLY BAD IDEA. When caregivers near and far, eat well, drink well, stay very hydrated, stay deeply in prayer THIS is what best supports the "sheading on ones skin" a less and less necessariy skin as one become more spirit and less body. Bonnie is not yet ready to pass over----but in the last years, even more in last months we've seen her skin be less and less a vehicle for the powerful spirit she always has been and is more and more becoming. Now her eyes. I HATE that BONNIE cannot see!!!!! AND AND AND I know that her eyes will be less less needed as her spirit becomes bigger and brighter. I know that her body is already not the body to support such ferocity, the bigness of the prayer she is. So for me what it says is "I will read more" "I will walk more" I will do these things in prayer for Bonnie---not "wishing" that she should walk or see (although if that is God's way I will be very happy) but because it is deep way of prayer, a deep way of acknowledging that all things change, a deep way of being clear that body is not spirit or soul. How does one nourish the soul....that for me is the most profound question for Bonnie right now. And how do I support this nourishment. I don't nourish is by getting angry at the bumbling medical system. Personally, I still ask questions of when Bonnie will tire of going into one more hospital for anything (if anyone hasn't noticed...going in for anything often gets her much more than she bargained for including life threatening infections) Nourishment however..... an entirely different matter.
Posted by: betsy | April 25, 2009 at 11:14 AM
More on nourishment and the shedding of ones skin tomorrow! betsy
Posted by: betsy | April 25, 2009 at 11:15 AM
Why is it that we tend to write when there is a crisis and not when life is calm?
Posted by: betsy | April 28, 2009 at 12:56 AM
Hi Betsy, Thank you for sharing what you have been doing with both your clients / patients and their families. It is always interesting to hear and try to visualize what others are going through and doing about it.
I can assure you that no one is currently having has to insist that Bonnie "Eat, eat". She is in love with her tea ritual in the morning. 3 cups of tea, including a dollop or two of honey in each one. When I get up and make espresso, she has the frothiest part of the steamed milk. I call her "La Crema" and kiss her forehead. She smiles her Bonnie smile.
At night I find contrails of stickiness on the brazilian cherry floors. I have to laugh. Bonnie can not see when she is spilling honeyed-tea as she wheels her teacup around on the seat of her walker. I am not living with a starving person. I am living with Pooh Bear.
Bonnie also has whatever is "The Thing" she is really hungry for most everyday. She likes to be served the meat we have roasted or smoked as Mexican food. I make homemade refried pinto beans and yellow saffron rice, avocado, fresh salsa, fresh cilantro, sour cream. I roasted two organic chickens, one with Lemon Pepper and the other with TexasBBQRub. We had smoked leg of lamb last week and the week before it was smoked pork shoulder. Bonnie made the homemade meatballs and red sauce she had been hankering for. Bonnie completed her starvation cycle for the year in November and December. Food is definitely back in it's proper place of pleasure and even joy.
Now, as to why I write when things are crashing down and not much when things are sailing along. I think it is the same reason people pray when something dire is happening and are off enjoying life when things are blessedly normal. When I write in Bonnie's weblog, I get to see what I am sitting on and am in the midst of. I get clearer about whats up and what I need to do next. As a bonus people say that what we write here is Real and often Useful to them. Above all I get a needed sense of communion / community. Writing here is a Win / Win.
On one hand I dumbfounded, and angered by how jerky the health care system is for Chronically Ill out-patients (to say nothing of Chronically Ill in-patients) Our health care system does better with Acute, Episodic care, yet this is an era of growing Chronic Illness. There is train wreck on the tracks as baby-boomers are reaching 65 and beyond.
Bonnie is concerned about getting her sight back and can't help but notice the waiting, waiting and waiting. We hear the ocean tides and sands of time running.
On the other hand, we have been laughing and enjoying our little lives. We continue to put stuff away in the beach house. Bonnie is still unpacking boxes. It could be as much as two weeks more until the house is semi-normal and box free. I do the laundry and cook and clean.
We truly love playing house together. We have been living side by side for the better part of 7 years. We have fun and we love each other, which makes all of this much, much easier. We do well together, especially when we let each other "steer" our own bodies. Control, when things all around us are out of control, is an issue we continue to deal with. My karma continually runs over my dharma.
Our current delight is getting Abigail her first purse. Abi carefully unpacks, inspects and repacks Bonnie's 4 gallon LeSportSac purse every chance she gets. I have 5 E-bay auctions on colorful LeSportSac purses I am watching. Bonnie is gathering things like a folding brush and mirror to put into Abi's first purse. Bonnie is going to get Abi a plastic snapshot wallet picture, like Jennifer has in her purse.
I do not think we are dying just yet, and every sun sets.
Now, I think we have to be very persistent to get Bonnie through this MRSA thing and then through the next two cataract operations. Hell, since Bonnie is now able to walk around without a cane, she may as well see where she is going.
That's my story and I am sticking to it. /D
Posted by: Daniel | April 28, 2009 at 01:32 AM
Hum.... I can see how it seemed like I was directing what I wrote at Bonnie--actually it was just stirred in me by my quest visions and the clients I am now seeing who are themselves preparing to pass over. Similarly---I was really writing more to all us "blog readers" than too you and Bonnie (about silence when all goes well) .....although it is wonderful to have gotten such a beautiful, rich, full, warm reply.
As I write this I am at my beloved Commonweal in the same little bedroom I occupied 15 years ago as a newly diagnosed breast cancer patient. Tomorrow is Alumni day and a few members of one of my support groups have come to scatter ashes of a recently departed friend. We will do this at 9, before Alumni Day brings us together with many more old and new comrades on this path.
I am just thinking a lot about the dying process as it interfaces with the living prcess these days. "Living into Dying" I guess is it more suscintly. We are such a "dying phobic" culture...alongside an "aging phobic" culture. These thoughts may also be more in focus as I turned 60 in February. I want dying to be seen as something other than a "failure" to survive. That's MY story and I'm sticking to it. B
Posted by: betsy | April 28, 2009 at 11:59 PM