Don’t take your body freedom for granted – Take Two

Remembering when I posted this a few weeks back, I knew never to take things for granted again.  Boy I sure wish I could go back in time……truly worse than I imagined.  But it is what it is…..

Body freedom. What do I mean by that?

In less than two weeks, I will again be hooked up to machines, IV’s, walkers, canes etc. This time for the long haul. This will be a six month process, start to finish.

I remember last year, when I was FINALLY able to walk without my walker after about 4 months. I could get up and go to the bathroom! I could carry coffee without spilling! I felt so free!

Then when my leg wounds finally healed after months of months of surgeries, and bleed outs and changing bandages constantly, wrapping leg in waterproof plastic/bandages too take a shower. I felt so free!

Then my PICC line finally went, and no more 3x daily infusions with all the Vanco balls and flushing lines and blood tests and wrapping the arm in waterproof plastic/bandages that still managed to get wet because how do you bandage your own upper arm properly? Finally. I felt so free!

I have been grateful EVERY DAY since then for those small freedoms. It may not sound like much, but when you are tethered like that for months and months, it is so wonderful. Simply wonderful.

Now, I have another six months of this same stuff ahead of me. Only worse.

Only worse. God help me. I may lose my mind this time, along with my body.

I can’t wait to truly be body free!




Ah yes.  Do no harm.  The hypocritical hippocratic oath.  The oath basically means that a doctor shall do his best to do no harm to a patient.  That might mean not doing experimental surgery, or dangerous procedures, that he feels will do more harm than good.  (Nazi medical experiments anyone?)  The original oath states that they can’t do a Kevorkian, or perform an abortion.  It also includes language that they will share their money and knowledge freely with other doctors.

Hmmm.  Obviously the original oath has been heavily modified and modernized. I do think that the majority of doctors are moral and ethical.  However, our society has made them into robots with a 15 minute time limit per patient and a payment schedule decided by insurance companies.

Now, I’m not going to go off on a rant here about Obamacare or socialized medicine.  I just want to talk about what we should expect from our healthcare professionals.

I expect someone to listen to me, first and foremost.  I expect them to take my suggestions seriously.  I expect them to provide the best treatment plan for me, about me, and agreed up by me.  I expect full disclosure about what to expect from any medication, surgical procedure etc.  “This won’t hurt a bit” doesn’t fly with me.  Let me lay you down on the table and try it on you first.

Ultimately, we are responsible for our own health.  A doctor can’t keep track of every patient like he should, and follow-ups are YOUR responsibility in that case.   And listen up, cause this part is important…..if you don’t LIKE your doctor…..FIRE him.  They work for you.  Don’t be subjected to a doctor you feel is condescending or doesn’t listen to you.  There are certain doctors at my medical office that I do not care for.  And I make sure to avoid them like the plague.  They are just not my type.  Then I have my GI doctor, who I love with all my heart and soul, and I have literally put my life in his hands for over 20 years.  The funny thing is that we like to argue about treatment options, but we do it with love and respect for each other.  (I am always right of course!).

If you have a serious medical condition, take care of yourself.  Nobody else is gonna take care of it for you.  Align yourself with GOOD doctors that you like and respect.  Then you can have the best attitude possible and perhaps have a better outcome because of it.

Tell me about your experiences with your doctors.  I would love to hear them!

How to survive a hospital incarceration

My brother-in-law recently had surgery.  It drudged up memories of my last surgery about 5 years ago.  I went in fairly healthy and hopeful, and came out almost dead and changed for life.

In everyone’s life, surgery is almost a certainty at one time or another.  I have had more than my share, mostly around my home in Lake County.  For my last surgery, my wonderful county club hospital doctor wanted me to have the BEST surgeon at a TOP hospital for Crohn’s.  He sent me to a big teaching hospital (BTH will used as alias so as to protect the identity of the innocent) in Chicago.  Great teaching hospital, great doctors, a big deal in downtown Chicago.  I thought I was 100% prepared, and anticipated every circumstance.  However, I did not take into consideration that my own body might betray me, and that I would not be able to act as my own advocate. 

My sister and niece went with me and planned to spend the night and go home the next morning after checking to see if I was ok.  I would come home a week later.  Upon arrival at the hospital, everything started to go wrong, from the get go.  They couldn’t get an IV in me.  The doctor was running late.  The nurses blew out all my veins out.  The anesthesiologist was called to knock me out and then put in an IV.  Surgery started very late.  Poor sister left in waiting room.  Doctor finally came out at 7 pm and told her I was done and would be taken to a room in an hour or so.  At 10 pm security escorted her out, they didn’t know where I was.  At 11 pm I woke up in a big dark empty room.  I squinted at the clock, and saw 11.  I thought it was still morning.  I passed out again, and then woke up when somebody asked me who I was.  At 2 am I remember being transferred to a room.  I have no idea where I was or why I was lost until 2 am.  I firmly believe I was left by mistake in the recovery room, all alone.

My sister and niece came by in the morning, and then left to catch the train home.  This is when my REAL ordeal started.  My right lung developed an air embolism from the anesthesia tube, and so they had to take out my epidural, and put me on push button morphine, which I very insistently told me doctor ahead of time DOES NOT WORK ON ME.  I am VERY resistant to all pain meds.  Heck, they can hardly get me to sleep with anesthesia!

The next five days went by excruciating slowly.  The nurses came in, took my vitals and poked me with needles and stole my blood, and that was about it.  Nobody washed me, helped me brush my teeth, nothing.  I laid there like a corpse, barely able to speak, as I had to focus all my energy on my pain.  Every minute seemed like an hour.  My whole existence had narrowed down to a small bed filled with pain and discomfort. The doctor would come in and I would just nod my head, I have no idea what they were asking me.  Finally I got to the point where I could speak, and the next time the intern came in, I broke down crying hysterically, telling him my tale of woe and neglect from the nursing staff.  I was a dirty, filthy, stinking mess.  Soon, I heard my doctor’s voice in the hallway, and a whole staff of nurses came in, to help me into the bathroom and clean me up and put on a new gown etc.  I felt so much better after that.  The doctor apologized profusely for the lack of care I had received, and then told me, that’s why most patients have family come and stay with them, there is a pullout window seat in all the rooms.  Apparently the nursing staff at a large teaching hospital doesn’t recognize a patient’s needs.  To their defense, I never had the same nurse twice, and most of them barely spoke English.  So I would say there was a HUGE lack of communication.

At that point I decided I definitely did not want to stay there anymore, and I better get out while I was still alive.  I begged the doctor to let me go home, and she finally consented.  So at 5 pm on Day 5, I called a limo to come take me home.  What an idiot move that turned out to be.  Rush hour.  2 and 1/2 hours of a bumpy car ride with an incision from the ribs to pubic bone dissecting my midsection.  Finally got home to my own bed and slept like a log the first night.  However, I still could not move about on my own and spent the next few days in terrible pain still.  Thank goodness for the kindness of my sister to feed me. Then, my incision developed an infection, most likely picked up at the hospital.  So I had to deal with another visit to the doctor who had to open the incision up and drain it and antibiotics and that whole business.

I tried to document everything that happened to me, and brought it to my doctor on my follow-up visit.  She again apologize and said she hoped this never happened again to another patient.  I told her that I realize now that a patient needs to have an advocate with them to make sure they are being taken care of properly, but that there are many people out there that are single or old and have nobody to stay with them 24/7 until they can take care of themselves.  Most people assume they are leaving their loved ones in the good care of a nursing staff, when in reality the nurses haven’t a clue as to your mental state, or even physical pain for the that matter, especially when you cannot speak and are not in your right mind.  Now, this is NOT true at all hospitals, or with all nurses, I have had the BEST nurses in the world at my suburban county club hospital, who even gives back rubs at night to help you sleep.  However, recently my hospital was gobbled up by none other than BTH, so I have NO IDEA what that means.  I can only hope they still have the same quality of nurses as before.  With the rising cost of health care, and the number of people with no insurance who cannot pay their bills, the hospitals are really taking a beating lately, and quite honestly don’t think things will improve.

So the moral to this whole story is to make sure your loved ones have a patient advocate by their side to make sure they are taken care of properly, especially the elderly or single people, who may not have any visitors.  Nurses are busy people, and don’t have the time to chat with patients to truly assess their condition.  I would say that most nurses try their hardest, but staffing shortages make it hard to complete all their duties.  Ultimately, YOU are responsible for your own welfare, and cannot depend upon the kindness of strangers.