I have good and bad news all rolled into one.
Thanks for worrying about me, people.
You should have been worried. I have been miserable.
I’ve had an air leak from the insertion site that hasn’t seemed to improve. My pain was a little out of control, and I had difficulty receiving my medications to control my pain and then being able to move to rehab myself like I knew had to be done.
After any surgery which causes pain in the chest or abdomen there is an increased risk of pneumonia. The pain reduces a person’s ability to take deep breaths, and without the deep breathing, bacteria can accumulate.
People get what is called “atelectasis,” and their breathing is further impaired.
With me all ready having an infiltrate, which was the entire reason for having surgery, I was at increased risk for problems.
From Tuesday until this morning I wasn’t able to do my activities of daily living: getting out of bed, brushing my teeth, fixing my hair, washing myself, walking. I just didn’t have the strength, ability to breath, or pain control to get through.
I just didn’t have the help where I could say, “I’ve had my MSIR, 30 minutes from now I need help washing.”
I actually didn’t even get help when I was gasping for breath, grasping my chest after I’d get back from doing simple care, like brushing my teeth or using the bathroom.
I think they just had no idea what to do so they did nothing or even worse, they hightailed it out of the room hoping it would just go away.
Not being able to breathe is scary, not having intervention in a hospital is even scarier.
Worse yet, all I needed was to be given some oxygen to help me resume my normal levels. As soon as I was moved from the surgical floor to the cancer floor the nurse grabbed me oxygen tubing with extension so I could at a minimum move around my room freely.
WHA-LAW, I’m feeling better. I’m not so scared, because at least now I am reassured that after I move I’ll be able to breathe.
My stories of hospitals past began to haunt me lying in bed day and night.
I remembered how patients would call 911 from surgical unit because they weren’t receiving care at the hospital due to staff shortages.
I remember an NP telling me how Mt. Sinai lost their transplant license after a liver transplant on a surgical floor went into shock and nobody noticed his shakes, tachycardia, and fever before he went into cardiac arrest.
As for me, I lost the call bell when I was sleeping and woke up gasping for breath, screaming for help, and no one came for a half an hour. I couldn’t breathe or move because of the pain. I had no option.
I didn’t get a scheduled medication because it was written down as ophthalmic corticosteroid instead of restasis and the nurse didn’t get their were two names for the medication.
I had visions of me failing to thrive, malingering on this floor, my pain remaining the same and my lungs getting worse as I laid there for days, unable to move or walk, and no person with the time to help me.
The final straw came when my mom returned from Mass. and saw how sick I still was and then my nurse, with the my medical record book in hand, told me, not only that I didn’t have the medication I was asking for ordered, but that if he were to give it to me I would orverdose, and he’d be running for NARCAN.
I sat, flabberghasted, that he would speak to me the way he did, especially when I knew I had the medication I wanted ordered.
My pain control was very meticulously ordered and checked through all the specialties: anesthesia, a pain team, and palliative care.
Everything I needed was ordered, I just wasn’t receiving them due to nursing errors.
My she-bear momma had the charge nurse in my room within minutes and requested a transfer.
My needs as a cancer patient were superseding those of a regular surgical patient, and some of the staff just were unable to adjust and handle the added acuity.
It’s been difficult experiencing the dichotomy of care between a surgical floor and a cancer unit.
I’ve always been interested in things that are seemingly the same, or at least should be superficially: the hospital’s Columbia Presbytarian & Bronx-Lebanon, which reside less than 5 miles apart, the conversations between physicians & their patients vs. conversations with their collegues, and now, the difference in treatment between floors of the same hospital.
The social culture within all these examples differs so extremely you may as well be in a parallel universe.
It really saddens me how many people willing take advantage of others who are less fortunate, who are not able to speak for themselves, and do not have the strength to stand for their basic needs.
I wasn’t even able to speak for myself and I’m an advocate.
It’s a terrible position to be at the whim of a person who is in charge of whether you get out of bed to get to the bathroom or whether or not your pain is in control.
How could anyone then complain?
After my mother and I complained about the care I was receiving I was told I had to keep the very same nurse.
Needless to say, prior to my transfer, had I not called I would not have received my scheduled doses of antibiotics.
And no, they were not administered by the useless nurse who clearly had a chip on his shoulder to begin with.
Health care practitioners have the power to say yes or no to your health status. Not even I could rise up when I’m dependent and demand what I need, what I know is standard care, and risk possibly receiving none at all.
Since I’ve been moved, I’ve finally gotten a shower. I have gotten out of bed for a walk. My ambulatory oxygen levels were checked, and I’m doing okay.
My chest tube drain has been upgraded to something I could take home with me if the leak doesn’t clear.
I’ve improved more in the last 24 hours than I have all week.
I’m now at the point where I can probably be discharged.
I could stay, of course, since I’m still having shortness of breath for no known reason, but haven’t been fully healed before my discharge recently. I just leave for quality of life reasons.
I think that may just be what I do, soon.
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."