My Pain Story – I Have HCP (Hereditary Coproporphyria)

My Pain Story – I Have HCP (Hereditary Coproporphyria)

By Teresa Chalk.

I have HCP.

My pain started quite young at around the age of nine.  That was my first inpatient hospital stay.  At the time; I was diagnosed with a very severe case of gastroenteritis.  I had not been feeling well and ended up with uncontrollable vomiting and severe diarrhea that became so bad that it turned into mostly blood and created enough loss of blood that my parents had a difficult time keeping me awake.  While feeling embarrassed because of how severe the symptoms were in the crowded ER waiting room, a physician happened to come in on his way to work.  The last thing I remembered, until I awoke in a room upstairs, was him yelling to a nurse “this child needs help now!”  My current physicians believe this was actually my first attack.

Teresa Chalk

With HCP being so rare, especially in 1977, combined with me having no access to any family history due to being adopted; I was not tested for HCP.

At the age of 10, I was diagnosed Chondromalacia in my right knee.  The cartridge in the joint quickly deteriorated causing me to need my first knee surgery at the age of 12.  As time rolled on; my knee would have problems fully healing, resulting in 13 surgeries.  In one surgical procedure, they had to make a long incision from the top of my right knee, around the patella and down the length of my shin.  They removed my patella, sawed my shin bone in half length wise, placed a screw into my shin at the bottom of that cut, chiseled out some of my hip bone and placed it in between the two sections of shin bone at the top.

In 1991, I was t-boned on the drivers side of my car causing the top and bottom parts of my body to lunge towards the driver side door and the center portion of my body to jerk towards the passenger side of my vehicle.  During this; my left knee slammed into the driver’s side door.  Because of the abusive nature of my marriage; I was not allowed to seek treatment for my injuries.  This has caused me to not only have significant skeletal/disc/joint pain; but, my left knee joint quickly deteriorated eventually requiring 3 surgeries.

As I grew older; my HCP symptoms became progressively worse resulting in a plethora of inpatient stays.  Because of the severity of many of these attacks; I have incurred both significant visceral and peripheral nerve damage.

The nausea/vomiting/dry heaving associated with my HCP is so severe that I formed a large abdominal hernia.  My surgeon had to use mesh to repair my hernia.  I am part of the hernia mesh lawsuit now because my surgeon told me the mesh contained the MRSA virus from the factory.  Seven days post sugery; my abdomen literally exploded open from infection.  Because of the MRSA and the mesh migrating; I have gone through three surgeries over six years in an attempt to remove the mesh and reversing the hernia repair and am now diagnosed as a permanent walking MRSA carrier.  I also now can feel everything that goes on within my abdomen 24 hours a day which is not only very painful on it’s own; but, the amount of adheasions contained within my torso feels as though my organs are constantly being yanked and pulled out of place.  Just the result of this alone is excruciatingly painful.

The incessantly chronic nature of not only my HCP, the results of my hernia mesh fiasco and the results of my car wreck and the deterioration of both knee joints causes me such intense pain that is severely unrelentless that it makes me feel as though I could go insane.

For 20 years, I have been told I need both knees replaced.  However; I work really hard with my coping skills in trying to “deal” with the pain because the orthopaedic physicians have told me the artificial joints only last eight to 10 years and can only be replaced once after that because the stability of the bones to withstand having screws placed in them to support the plates that keep the artificial joint in place would be to greatly diminished.

Please allow me to describe to you just the HCP pain alone:

Because of the sustained nerve damage; I have burning, firey electricity on a daily basis that enormously intensifies during an attack to the point of my body jerking off the bed/chair.  The lower part of my legs and feet have a greatly reduced sense of touch and my feet feel as though a convoy of semi-trucks are stacked on top of each of them.  I can sometimes randomly fall because the bottom of my feet have so little feeling that I have a very difficult time feeling the ground beneath them.

Within my abdomen, where I feel everything my body does, it feels like a combination of my organs being wrung back and forth through a red hot meat grinder, being stretched and twisted be a very strong person that is angry and being run repeatedly through a chamois roller at DIY car washes.

This feeling is present at most times but, of course, grows much worse during an attack; to the point of being unbearable.

I do sometimes dry heave in between attacks but this symptom is definitely exacerbated during an attack.  Many times the lining and my intestines push through my hernia and at times get “stuck” to the point I have to try to straighten out as best I can and push them back where they belong.

I suffer chronic migraines that are horrible enough on their own but during an, attack they feel like a set of jack hammers working to shatter my skull to finally allow my brain to escape.
In total; I have had 29 surgeries, the multitude of inpatient stays previously mentioned, two comas, my kidneys have shut down three times, three mini strokes, temporarily partially paralyzed twice, and a heart attack.

My physicians say I now need a spleenectomy and liver transplant and still need my knee transplants because it is so painful to walk….kneel…use stairs, etc.

I have spleenomegaly, colitis, cirrhosis, NASH, seizure disorder, severe anxiety disorder, visceral and peripheral neuropathy, undiagnosed reduced eye site that I have an appointment with a neuroophthamologist on 11/1/2017, and almost all of my teeth have cracked and broken off leaving the roots still within my gums.  It is very painful when I try to eat, as well as, simply to close my mouth.  I am having to set up a GoFundMe account in an effort to raise money for dental implants because my physicians do not want me to have dentures.  Both my Aortic and Mitral heart valves have regurge.  Doctors tell me with the risk of lesions/infections the possibility of further damage to my heart are too great.  I would most likely end up needing my heart valves replaced.

In conclusion:  I’m sure anyone can see the complexity, consistently and intensity of the chronically severe pain that, as a patient, I suffer through.

While these are the details of my story…this is much larger than just me.

Because of the current recommendations of the CDC in an attempt to combat what President Trump has referred to as “the opiate epidemic”; there is now an equally tragic epidemic crossing the nation.  The epidemic is suicide due to the mandate for physicians to ignore/refuse to fully and properly treat all the symptoms Porphyria patients, that suffer chronic pain, have out of the fear of the legal/professional negative ramifications that these very CDC guidelines have put forth.

Please understand that our chronic pain is a travesty we are being forced to endure simply because Porphyria has not been placed upon the CDC’s opiate list of excluded diseases/disorders.

Chronic pain, REGARDLESS of it’s pathology, is REAL!

I am respectfully imploring you to recognize our suffering as victims and to add Porphyria to your opiate list of excluded diseases/disorders.

Thank you for your time and consideration,

Teresa Chalk

This article was originally written by the author, for the American Porphyria Foundation, who are gathering stories to take before the CDC in hopes of consideration for inclusion on the CDC’s opiate list of excluded diseases/disorders. 

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Authored by: Teresa Chalk

There are 10 comments for this article
  1. Lilith at 1:09 pm

    Dear Teresa, I have not been able to get you out of my mind since I read this and I’m crying as I write this. I feel so ashamed for complaining about my chronic pain journey after reading your story. Please know there is someone out there praying for you. Don’t give up; I just know you will get the funds you need for your dental work!

  2. Notasheep at 8:37 pm

    Jesus wept…..I absolutely cannot imagine the pain, physical AND mental you go through.
    May the sun grant you warmth, the earth grant you sustenance and the sky grant you breezes of comfort.

  3. Tim Mason at 9:14 pm

    Teresa, you have incredible coping skills. I don’t know how you manage the obvious prescription schedule you must have and paperwork. As we get older, comorbidities are an ever present danger in an average person. I have never heard of this disease.
    I did discover that in 2016 when the AMA met they stated that “It is not unethical to refuse a patient when the doctor felt he could not get his due revenue from a patient”. I found this an absurd stance but did find it to be a true statement they made. They did this due overcome the “pre existing condition” clause in the ACA. It is called “Cherry Picking and Lemon Dropping” a patient. This actually happened to me with an “In-Network” physician. I had let my back issue go and ran from spinal surgeons for years. Checking with my insurance patient advocate I found that I needed to go out of network and into a “University Setting” for treatment. Perhaps a Mayo Clinic type setting is for you.
    I have no where near the issues you have, I have scar tissue encasing my lumbar nerve roots and no one will repair an extruded disc above my hardware.
    I agree with Bob, You should not be held to some guideline prepared behind closed doors individuals with no knowledge of what real pain is. The groundwork has been laid to expose what has taken place and harmed not only patients but their doctors and livelihood as well. Many have become victims of narcissistic greed and envy.
    Be Well,

  4. Tatiana S. at 8:28 pm

    I crying because I felt how much pain you suffer:( I really hope you will find doctors with great heart, understanding and no fear of lousing their jobs but fighting for their patients to live not survive!!! God Bless you!

  5. Sandie Hamilton at 3:18 pm

    You know the old saying ” I cried because I had no shoes, until I met a man who had no feet.” thats how teresas story mafe me feel. Life could be worse and is for many. Lord help us see the suffering of others as plainly as we feel our own. Let whatever csn be done. Be done. You will not leave us comfortless. And I trust you for people like Teresa for all who battle unseen disease pain and injury that you are in this with us!

  6. Kristen K at 12:58 pm

    Teresa, Thank you for sharing.I pray that someone from Congress reads your letter and can find it in their hearts to have some compassion for all your going through and everyone who lives with Chronic pain including myself.My heart and prayers go out to you.

  7. Debra at 8:48 am

    Teresa, God Bless you. Reading your experiences was so difficult. To think you have experienced this since childhood is heartbreaking.

    I am 65 and listening to this “optiod crisis” mantra on tv is nauseating. I don’t doubt there is widespread abuse but his has become so scary. Feels like Reagan and “the war on drugs” of the eighties all over again. It didn’t work then and it won’t work now.

    First they pair together illegal drugs like Herion with prescription opioids which is so rediculious. Yes there is abuse but people who need pain medication legally will turn to street drugs like Herion to relieve their pain.

    My prayers Teresa, Deb

  8. Joy R Louters at 6:33 am

    Teresa, I hope and pray your letter was sent to every member of congress. They have to read it and understand what you are forced to live with every day. My heart hurts for you. I can’t imagine the pain you have suffered and still suffer from. I have had many surgeries, too, and no one understands what that is like to recover from unless they feel it themselves.

    The torture of suffering with relentless pain every day of your life and having the only thing that helps taken away is brutal, cruel, and inhumane. Yes, there have been suicides as a result of pain medication being taken away. And, without a doubt, there will be many more. I pray for all pain patients every day. I never want to be so engulfed in my own pain that I can’t see the suffering around me.

    Teresa, you stay strong and never give up, not ever. Somehow, some way we will get the government’s attention so they make the changes necessary to help those who live with pain every day of their lives.

  9. nana at 6:20 am

    Teresa,
    Thanks for sharing a painful story. I am so sad to hear you have gone through so much.

    Keep fighting the good fight.

  10. Bob Schubring at 6:15 am

    Teresa is the sort of patient who terrifies doctors, hospitals, and malpractice insurers. Her case has so many complications that almost anything a doctor does, could make her worse instead of better. The MRSA bacteria she got (correction needed…MRSA is a bacterium, not a virus), put her in need of strong antibiotics if they begin to spread. But the strong antibiotics are a danger to her liver. If she turns up in an emergency room in a medical crisis, by law the doctors must do something, even if she has no money to pay the bills. (By law, she ends up a State Ward if this happens.). Malpractice insurance firms, like Andrew Kolodny’s PRI, need to smear patients like Teresa as “drug-seekers”, so that there’s an excuse to kick her out of the emergency room. If they admit to any of her real medical problems, she costs them money for every mistake they make.

    Doctors are human and have emotions. Fear is one of those emotions. When doctors are afraid to treat a patient whose condition is very complicated, it’s necessary that they say so, and find some other doctor willing and able to explain to patients like Teresa, what might help her condition, let her make the hard choices affecting the rest of her life, and then do what fits her wishes. Smearing people as “drug-seekers” is not helping.

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