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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Saturday, January 3, 2009

The Fearless Warrior (Le Guerrero)

I think the word “warrior” in Latin is where the English word “guerrilla” comes from. Let’s talk about my personal experience with le guerrero (The warrior, in Spanish).
In the early millennium a large, well-known, world renowned hospital lost their transplant license. The official word was that a post-op liver transplant patient was placed next to a patient with the flu.
This would be negligent malpractice, since organ transplant patients are severally immune-compromised due to medication given to prevent organ rejection.
Placing this patient next to a person with the flu, would be the decision of a nurse, but it would also possibly be lethal.
This patient did die, but this isn’t how it went down.
Many health care providers have stories that haunt them. This one just happened to haunt someone I knew well enough to get the truth.
Some hospitals have the world’s greatest surgeons and medical care. They advertise their doctors like untouchable demi-gods. These doctors are rockstars. They’re the best in their fields.

Unfortunately, these hospitals have to cut costs somewhere.

They have third world nursing care. Once you’re out of that office or out of that Operating Room you are in their overworked hands.
No one has found the magical solution to recruit nurses, my quick thought, start in middle school, give guidance counseling to junior and seniors in high school showing how to go to college for little or nothing, advertise “Travel” nursing and the big pay checks. Make nursing more fashionable, sexier, or vogue. Nursing needs an image change. Running around in uniforms that look like PJ’s is not so “hot” in high school, but traveling and money is.
Well, once you’re away from the doc, you’re in the hands of understaffed units and providers, who cannot get you so much as a blanket since there are none on the floor. They may have so many patients they forget some. They are not specifically educated to care for transplant patients, which would be ideal.
Some barely speak English, but don’t judge that, the language they speak says nothing about their skills. Some of the smartest nurses I’ve seen are straight off a flight from the third world. They know how to work with what they have.
The transplant patient found this out the hard way. He died over days, his spouse by his side.
When he got cold, she asked for a blanket, then she demanded a blanket.
There just weren’t any.
When he started to get chills, she called a nurse.
They said he was probably cold and to bring a blanket from home. She did, but the shaking didn’t stop.
When the shaking turned into rigors (a severe shake, convulsion-like) caused by a fever, the caretakers said they would get to him.
Take it from me, RIGORS ARE PAINFUL!! It takes energy for muscles to contract so often and uncontrollably. It is like your body forcing itself to do the "Harlem Shake" for HOURS.
By the time someone noticed and understood the progression of these symptoms, the man was already in shock from a post-operative infection.
This is something that should have easily been seen early and had some basic antibiotics ordered. The outcome would have been really different had this happened.
Inevitably, he was transferred to a critical care unit, but died none the less since appropriate antibiotics had not been provided in a timely fashion.
This should never happen in a hospital. He may have been better off at home with the VNA, but he wasn’t, he was in seemingly capable professional hands.
No one took into account how different exhausted professional hands function. All the people surrounding this man likely had the best intentions, but intentions only go so far when you are an RN with 40 patients.
Yes, I said 4 & 0, as in forty. You may have two LPNs and two LNAs to help you. I’m sorry to be the one to bring you this truth, but don’t kill the messenger. Work to change.

Part II

The fearless warrior, we’ll call him Guerrero (Spanish for warrior). He was a long term patient on a renal transplant unit in NY. His diabetes was not so well controlled, but not so terrible either (a common cause of kidney failure is diabetes).
As an intern, my preceptor could assign students to the M/S unit attached to the transplant ward or the “special students” were allowed to manage the transplants with their twenty plus medications, their “required” constant monitoring, blood transfusions, endless injections, strict I’s and O’s, reassessment, etc.,etc.,etc.
Le Guerrero had ulcers that had turned to gangrene that needed daily debridement and time in the hyperbaric chambers (to stop the growth of “anaerobic” (oxygen hating) organisms). Mr. Guerrero was not native, but he spoke English well.
He was placed across from the nurse’s station and the resident’s table immediately after surgery.
Unfortunately, his kidney failed to “take” and begin functioning, and the stress had sent his diabetes out of control. I never heard the suggestion “insulin drip,” but he was taking a lot of blood sugars readings and shots. He administered these himself. He filled out a form given to him to log the information, along with his urinary output.
Day after day I cared for him with no sign the transplant was successful.
His wounds, however, started to heal.
Who cared? No one needs their legs with kidneys that don’t function. No person I ever heard mentioned this success. I DO think it is psychologically important.
I left for holiday or the weekend or maybe a friend’s funeral who passed away suddenly (that would be Val L., who died in a car accident rushing to a soccer game, you Fall Mt. people).
When I returned, I was assigned another patient, only one on the medical/surgical floor, but eventually, I got bored and went to find Le Guerrero, the peaceful strong man who was HAPPY to be getting treated.
He had been moved down the hallway, into an awkward, isolated, dark corner of the transplant unit.
I walked in to find him asleep, almost lifeless, his dark skin grayed and ashy, breathing shallowly in pain with a catheter bag FULL OF URINE.
His kidneys were working! I was so excited!
When he saw me, he opened his eyes, which were glazed over, groaned, and did not move. Wasn’t he moving around post-op day one (that day after surgery)? Didn’t this man smile and joke while having his gangrenous, weeping wound that had eaten through layers of skin cleansed?
Back then, He was joking and laughing without pain medicine.
This was NOT the same man. I walked in and asked “When was the last time you saw someone?
“Errr, I dunno.” He groaned. He recognized me, but did not have the energy to great me the way he had before. My fearless warrior was sick, and by sick I mean, going down the drain. He was dying.
“Who is checking this?” I said and lifted the bag collecting his urine, which was so full it was flushing back through the tubing probably into his virgin kidney.
No answer.
I emptied it, obviously, and left, trying to find his nurse. I found her only to be informed Le Guerrero’s kidney did not transplant and that he was only being kept for supervision until they could find appropriate placement.
Nothing I could say would convince this woman otherwise. I was young. I was naïve. She gave me the “Maybe-in-your-world, honey” look over the top of her glasses.
Maybe you have seen that look before?
This was probably the first time I ever wanted to beat another nurse over a patient. The move from front and center, on the what, ten bed transplant unit, to the back dark corner filled with medical equipment with no storage areas had clearly been detrimental to his healing.
I understand, space is a huge issue. One former director of a large hospital in NY I know hired trucks to haul around supplies while being assessed by JAYCO.
The bigger problem here is that a man got lost in his room! WTF?!
If you don’t understand the problem here, you haven’t been reading me.
He lost his social status and structure. He became lonely and ignored. He lost his joie de vivre (I don't know how to say this in Spanish or English for that matter).
In theory, this may have devastated his compromised immune system. It may have contributed to the eventually loss of his transplanted kidney. That's basic psychological immunology.
What do you think happened to Le Guerrero?
Yes, Sir/Ma’am. He died. I left my rotation soon after being experiencing this terrible memory and reality. The world gave up on him and he gave up on the world.

What did I learn? I learned to toughen up, to get my game face on, and that I couldn't save everybody. That is one harsh reality for a young woman who really once thought she could save the world.

***The picture is from Pelham Bay, BX, NYC.****

"In every cloud of gray, there is a silver lining." -Jerry Garcia

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