May 8th, 2018

Thank you for your information. Hopefully it will bear fruit so my life will have a chance of improvement.
@donno, what symptoms did you have that led to the retro-peritoneal fibrosis diagnosis?

-Kidney failure, liver failure, high blood pressure, painful urination, scrotum swollen 3-4 times regular size, chronic flank & groin pain, pale yellow skin & eyes, dehydration, vomiting, high fever, delirious, migraine, high white cell count, severe anemia, high kreatin (sp?) levels, exacerbated symptoms from previous diseases and injuries (among other mental & physical insults**). I went to my closest large Medical Center and repeatedly told "Go home, you have a urinary tract infection," and treated me as if I was only there for the narcotics.

Did you have to get a MRI or a biopsy?

-I cannot take an MRI due to my pacemaker. I had several TIAs, (mini-strokes), and a heart attack brought on by improper meds, (no longer on market), stress, arrhythmia, anemia, swollen heart sack, and other childhood anomalies**. I have had 15-18 CAT scans in the last 18 months and I don't how how many in the last 10-20 years. Mother & Father died of cancer, sister of diabetes.

-(**) - Born in 1956, I am a child abuse survivor; In infancy, I was smothered to unconsciousness, allergic to nearly EVERYTHING, chronically banged my head to sleep, insomnia, asthma, both my older sister & I were physically/emotionally tortured, had un-diagnosed ADHD, memory lapses, night terrors, bed-wetting, chronic fatigue, un-diagnosed pneumonia, risked exposure by running away from home a dozen times, set neighbors house aflame, killed and abused small animals, endured other bodily infections untreated, chronic stomach pain with acid re-flux, (ulcers), a couple of attempts at suicide by drinking toxins, all before becoming ten.

-Age ten to 18 I drank almost daily and smoked 1.5-2 packs of cigarettes a day. I stole, ran away, skipped school barely passing despite teachers saying I was intelligent, articulate, but unable to focus, lacking concentration -(deemed 'acting up'). Beaten up daily by class bullies for being too weak and too smart . In my teen age years I was inhaling toxins like airplane glue, spray paint cans, de-greasing solvents until drugs came around. I used and abused all but drew my line at cocaine, heroin or anything by needle. I have never suffered from any addictions thankfully. I gave all this up when my mother who had various cancers throughout my life, died at 48 leaving me totally alone at 18. I grew up and worked at 3-4 jobs abstaining from all evils for years until illness caused several major surgeries, (perforated ulcer, repair, vagotomy, and hietal hernia).

-I consider it a miracle to not have evolved into a serial killer or sexual deviant. My 140 IQ got me almost through 2 years of college, (illness & finances forced me to quit), and completed a trade school. Currently happily married 12+ with 5 kids between us and ten loving grandchildren I would do anythinbg for.

-I suffered from depression my entire life thinking my family was right, I believed I WAS evil, stupid, ugly, lazy and worthless. The stress the surgeries and subsequent financial ruin put on me finally made me snap. Nervous breakdown - twice. I went in-patient and was given electro-shock therapy, (1st time without my consent****), and then zombie-fied for years on mind numbing medications believing Psychiatrists know what they're doing.

**** multiple sessions of shock treatment caused more severe memory lapses, more poor decision making and concentration difficulty. When my wife picked me up I asked, "Whose kids are you babysitting?" In tears, she croaked, "Yours."

- A biopsy would be too little too late. I was quickly advised to 'get my affairs in order'. I didn't expect to wake up from the radical surgery removing dead organs and wrapping some of the remaining dying ones with tissue from elsewhere supposedly non-adhering to scar tissue. I lived 2 years with hoses protruding from my rear flanks to bags strapped to my legs, and 8 years of immune-suppression medications that rose from $24 to almost $900 a month.

Are you taking any medications while you wait to be seen at Mayo Clinic?

-I take 19 prescription and 14 supplements daily.
- I have volunteered what little
energies I have gaining signatures for New Approach Missouri trying to
get Medical Medical on the November ballot. I believe that had I had access to those products I would have suffered much less from PTSD, stress, avoided medications and botched spinal surgeries saving me years of quality life, untold money and the affections of my family who, in our ignorance, didn't understand what was wrong with me. Doctors and illnesses have taken everything from me. I'm too old to get excited enough to mentally snap, but early dementia has been mentioned, so there's that.

-My immediate problem is that scar tissue has caused a narrowing of my small intestine. Plaque or some food residue builds up and frequently, completely blocks my bowels. The pain is horrific and nothing ANYONE can do will prevent it. All dietary restraints and supplements have failed. All they can do is put me on IV, control the pain and give me time to reboot my intestinal system.

-I have returned to the hospital at least every 4-5 months and lately as frequently as 36 hours. They don't know what to do with me at Kansas University Medical Center. They don't dare risk a surgery without incurring the wrath of RPF on my 1.5 kidneys and other over-stressed organs. I can't relive the horrors of last 8 years again, and I won't do that to myself or my loved ones. We are essentially financially ruined. I would rather 'Kavorkian' myself out than live through another hell like that. I can't bear the burden this has put on my body, my mind and my family.

DonnO

----- Forwarded Message -----

@donno I have been here a short time and just read your story. Your strength and courage in the face of such adversity is inspiring to say the least. You must have a very strong and good spirit to have survived all that you have. I confess by the time I finished your story, tears were streaming down my face, as I saw in my mind the child that you were, the young teen, the hopeful man,the patient with extremely serious illness and as I considered the evil and illness that you survived. Not tears of pity, but tears of love, tears of kinship. You are a valuable person,a survivor. Your story can give hope to others. Do you write? Would you ever consider buying a big fat journal and beginninng from your earliest memory and just telling the whole story? It is story of the human condition as well as the story of one strong, intelligent person and the life and choices he was given. Please keep writing and be blessed!

Oh my gosh I'm so sorry for all you,ve gone through this shouldn't happen to anyone Might I ask have you helped yourself through meditation? Or Tapping ?Nick Ortner uses tapping on depression,medical issues and just how to not let the past define yourself Please check his website out maybe it will help you Tapping.com you are a very strong person to have gone through all that you have