Ruth D. Bruno ~ Why and How I became a Nurse

Type of Porphyria: 
Acute Intermittent Porphyria (AIP)

Why and How I became a Nurse

October 29, 2013

After being diagnosed with AIP I was in the coffee shop waiting to be discharged from Robert Packer Hospital in Sayre Pa. I bought a newspaper and there on the second page was an ad for a new program for NYS University.  A two year program for adults interested in a nursing career was being introduced.  I filled out the application.  A few days later I was contacted and told where to report for entrance exam.  I passed the exam and was accepted into the program.

As I entered NYS nursing program in 1973 I discovered my true calling.  I have to admit I loved being a student even though I had absolutely no prior medical training.  When I signed up for my course of study I did it in order to survive the medical system in place at that time.  So much has changed in the years since but my training.  What I did learn and do as a nurse has served me well.

 I am just your everyday, run of the mill nurse, with my own unique story.  Every day I came into contact with people from all walks of life, from the destitute to the wealthy, young to elderly, simple to genius, cruel to caring.  I had not planned on being a nurse until  I was diagnosed with a strange disease after years of suffering and 4 major surgeries and now with two children I  learned this AIP is genetic disease and I was plain angry at all doctors.  I was worried about my children, who by the way by the grace of God are negative for porphyria.

In the 1970’s while in an acute crisis it was the nurses who I could count on and I admired them greatly.  As a nurse I had to learn you can’t get too emotional or involved, even though I had been on the other side, lying in a bed sick and needy.  Nurses when I was still working were there to explain things, including the foreign language the doctors’ use.  The nurses were there to help you in and out of bed, to help you help yourself.  It is not just giving medicines and dressing wounds although I’ve done that too.

As we begin 2013 the medical profession is hardly recognizable.   If we with porphyria can get a primary doctor to take us on as patients and then have an attack and have to go to the ER (now called ED in many hospitals) we will see a doctor there that doesn’t know what porphyria is.  If admitted we are then turned over to the “Hospitalists” as most primary doctors do not make hospital rounds anymore.  Now you are seeing the second group who does not know you and may not know anything about your disease.  I was angry at the medical profession when I began my study and now with all the changes to protocol I have to be angry again. This is not happening to just porphyria patients but to all patients with any disease or medical emergency.

In Jan. 2004 I faced this personally.  It was Friday and very cold in Illinois.  I didn’t have too much pain, just weakness and nausea.  Finally that afternoon I was taken by my husband to the local ER.  I remember seeing the triage nurse but then I went into a coma and respiratory paralysis was intubated first then when the hospitalist felt I was stable the tube was removed.  Just 30 minutes later, I went into full paralysis and had an emergency tracheotomy by yet a different doctor.  He was then advised by my family to put me on a respirator and I was there 21 days.  I had 3 surgeries that night to repair the damage done to my throat and stop the bleeding from the emergency tracheotomy.  I remained comatose throughout all this, the details of that is too graphic to put in this story.  When I finally started to awaken I was in such pain that I wanted to die. Now I was dealing with AIP pain, plus pain from all that had happened prior, 40 lbs. of fluid that had to be removed.   So from Jan.16th –March 3rd of 2004 I was in a coma.  Waking from coma brought more pain. Both physical and emotional because  now I could not talk, I had my eyes that would not close with  bleeding  from the tear ducts.  I had a feeding tube, could not write, could not turn myself, could not stand or walk.   Nurses cared for me around the clock in intensive care, working to prevent bed sores and to administer medications, getting the doctor if the need arose.  Nurses have to follow orders from the attending physician.

Now like many others with porphyria know the team of doctors treating me would NOT call the “Porphyria Experts” for help. They were not my primary physician so they did not know me. My family rallied and they fought for proper care, drugs etc. and brought me through. 

My oldest son quit his job and brought me home and became my 24 hr. 7day a week nurse, my husband and youngest son were there to help but my oldest had learned how to care for my track and puree food etc.  The three men in my life gave me my life back.  AIP is not something I would wish on anyone but it has taught me so much and I have the BEST NURSES EVER, my husband and sons.  They learned a lot from my nurses training, I practiced on them when I was a student and they studied with me as little children and then years later as big strong men they took over my care. Carried me, taught me to walk again, dressed me, and prayed for me, read to me and so much more.

 My message is caregivers are nurses and I loved being a nurse.  In my heart I always will be a nurse.

 

 

 

Ruth D. Bruno