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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Thursday, May 26, 2011

Project Lean

My mother will be calling my Doctor soon to voice her opinion regarding my upcoming chemotherapy plan.
I spoke with Dr. G the other day and listened to his ideas regarding my next Bendamustine dose.
He wants to aggressively pre-medicate me like patients are for Taxol, decadron 8 hrs. before, 4 hrs. before, and immediately before infusion. Also immediately before infusion, IV fluids, tylenol, and benadryl for what we now suspect is a severe allergic reaction to the drug that makes me appear septic: raging fevers, racing heart, and rock bottom blood pressures that place me on the brink of coding. After the infusion, I'll continue to take decadron for the next couple days and benadryl around the clock.
If this doesn't fend off my reaction, I will no longer be able to use the therapy.
As much as I don't like pumping myself full of steroids, we agree on the regimen.
We agree, except he thinks this can occur as an outpatient. I'll take my own decadron leading up to the infusion. I'll go to the clinic as usual. I'll leave as usual. I'll take the post-infusion medications. His explanation is I will be getting the same treatment I would as an in-patient.
Being the person who wakes up feverish with cold sweats and chills, unable to breathe, unable to walk, or even stop throwing up for the 30-40 min. trip to get back to the hospital, I'm not a fan of this idea, but once to the hospital, I lose consciousness.
My parents, being the people who rush me to the hospital fearing for my life and stay by my side advocating for the very best treatment, do not agree with doing this as an outpatient at all.
Losing consciousness is not what I imagined it would be.
I thought being "unconscious" meant comatose, peacefully sleeping complete unaware of the world like in the movies.
The "completely unaware of the world" part is correct. Everything else was wrong. I'm up. I'm talking, but not always coherently. I'm coherent enough to answer direct questions and follow directions, but I am not "conscious." I'm not aware.
I've gone to my safe place. I feel no pain. I have no fear. I won't remember anything. I'll regain consciousness periodically, but I won't be able to tell you the time, day, month or hospital I'm in for the next two days.
By any medical definition, I'm severely disoriented, but staff, mostly the Doctors, still have me guiding treatment when I can't even tell them the season.
My condition leaves my parents to care for me and remember all the terrible,  inadequate treatment I receive.
I've been telling you the truth regarding my admissions recently, but I haven't been telling you the whole truth.
My opinion as an educated patient and former ICU/ER RN, if you or a loved one is hospitalized, do not ever leave them alone to fend for themselves unless you know the staff personally or they have proven themselves competent over a period of time.
Over the past five years, my mom has become a professional medical advocate and my dad (who ever would have guessed this?) can diagnose me and suggest basic treatment accurately before I get to the car to race to the hospital.
They are educated loved ones.
Yesterday they informed me that despite their best efforts, I was not administered antibiotics for over 4 hours less than 6 hours after chemotherapy with a temperature over 101.5. This is the basic standard of treatment.
This means it is the very least that needs to be done to care for me.
The first year resident, the absolute peon of the hospital who also happens to be a future hematologist that had treated me before, over-rode his attending to give me the anti-biotics.
He could not over-ride him to administer my daily narcotics, forcing me to miss my nightly long acting morphine dose when I was all ready in pain.
I  woke up in so much pain I asked to be made a "do not resuscitate" thinking this would make staff more comfortable with administering the doses I needed. I was comfortable with dying to stop the pain.
Thankfully, my parents were not and made sure I received what I needed or I would not be warning you today.
That ER Doctor is fortunate I don't have any memory of him, because if I did, I don't care if I had to jump out of my wheelchair with my oxygen tank attached to my bank, I'd get up and kick him in the kahoonas for making me suffer the way I did.
I wish I could say this event was isolated. It isn't.
Three weeks ago when I ran to the ER under the same circumstances I waited over four hours to receive IV fluids with a blood pressure as low as 50/30.
This is down right negligence. This is an atrocity that could have absolutely killed me.
A normal, healthy blood pressure is 120/80. In an athlete, the blood pressure could run lower.
A blood pressure of 50/30 is never, under any circumstances, safe. There is not enough blood being sent with enough force through the body to maintain life. At this pressure blood is likely being shunted to vital organs: the brain, liver, kidneys, etc.
It's no wonder I was not fully conscious.
To remedy a low pressure, patients are giving "runs" of normal saline (IV fluids) to help increase volume within the blood in hopes the heart will push the added volume harder increasing pressures. If this is not successful, medications called "pressors:" dopamine, dobutamine, neosynephrine, levophed, which cause severe vasoconstriction to the point patients can lose limbs if not administered properly due to lack of circulation are used to raise blood pressures.
I waited 4 hours to just to receive IV fluids, only then to have two liters flow in simultaneously to catch up for lost time. I received 6 liters total, raising my pressure to 75/40.
When the double bags of fluids started I knew I was in trouble. When I was told the nurse would be getting a urine sample using a straight catheter (a catheter like a straw that goes in but gets taken out immediately) I asked for an indwelling catheter (one that stays) so I wouldn't have to get up to pee every 15 min. and risk falling. I'm a wobbley sick person.
I was told "No, that would be an infection risk."
I was confused. Putting that straight catheter in would put me at the same infection risk as an indwelling, but keeping the catheter would actually provide benefits.
I was still denied.
At one point, almost every person who came into an emergency department that required an IV was immediately given IV hydration. A person with a blood pressue of 50/30 would certainly not wait hours for them.
No person who was being straight cathed with two bags of IV flowing would be denied an indwelling catheter.
I'm scared for my life. My family is horrified and getting angry.
We suspect there is a cause beyond blatant negligence.
Recently hospitals have undertaken what is called "Project Lean," this is defined as "A hospital based quality improvement initiative." This initiative is to treat patients as efficiently and effectively as possible using as little intervention as possible.
In Emergency Rooms for example, nurses have been told not to administer any intervention until a Doctor has assessed and officially ordered an intervention.
I understand this is how textbooks tell the world ER's operate, but in reality there may be one Doctor to 6  RNs with 3 seriously ill, even actively dying patients.
That one doctor can't be in 3 places at once. Privacy issues state the three patients can't be in the same area together.
Should the Doctor pick which one gets treatment or should well trained experienced RNs provide care based on ACLS (Advanced Care Standards?).
The answer has always been save the patient. Get the patient the best care as quickly as possible.
Dr.'s are now being told to see all patients before being given treatment, meaning it could be hours before a seriously ill patient, like myself, is seen and cared for.
However, this is not how they are used to functioning. They haven't changed their practices yet.
And this is all happening to control costs. I predicted this would happen years ago. A bankrupt health care system can not provide adequate care. People die. I don't want that person to be me.

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