Father is dying; Someone please help!

Hunter
Lisa Abrams
3004 Roselawn Blvd.
Louisville, KY 40220
(502) 356-6924
lveisfree@aol.com

To Whom it May Concern,
I am sure with so many patients needing dialysis every facility has exhausted every avenue for the most productive care patients can receive. Some I am sure their are patients who will have to be treated differently or “outside of the Box” in order to accommodate their needs. But In able to save the lives of ESRD patients, someone needs to advocate on behalf of their needs. Making sure the patient’s needs and challenges are met.
Just as in life, each of us are different and have unique situations and adversities that need love, understanding, patience and compassion.
My Father is one of these people:
In TN. One year ago this month, my father, Captain Richard Abrams, an honorable veteran had a massive brain bleed.
The doctors gave my father a 5% chance of survival through out the night. He Survived…
The doctors said he would not talk, walk, or recognize any family. HE DID.
Dad opened his eyes, knowing all of us, moving all limbs.
Dad mouthed the words, “I love you” to me.
My father was placed on a ventilator for precautionary measures due to his brain bleed, although Dad has never smoked, and exercised daily. Dad needed time to be weaned from the ventilator. Dad was sent to a step down facility, still located in Nashville, TN.
The staff there were not as patient as he needed them to be.
This facility gave up on my Father very quickly.
The center gave my Father a 48 hour notice that he was being moved to another state.
Our family members who are involved with the care of my Father include: Myself, My daughter (31), My son (who has autism) and 3 grandchildren, one who has epilepsy.
In able to assure my Father’s care was the best, we followed the ambulance that transported him, nearly two states away. Doing this we lost our home, a lot of our belongings, and had to leave loved family members behind.
I was always very explicit in every conversation, “My Father never wanted to be placed in a nursing home.” I told him I would follow his wishes. When we arrived at our destination to my surprise, the staff members, social workers, office personnel, had lied to me.
They started admitting my Father to the floor in this facility that was for “Nursing Home Patients,” only.
Dad has defied all medical odds, and even though my Father was talking over his ventilator, talking on the phone, even hugging his grandchildren. Each of his Medical Discharge summaries (reading them) made it seem like he was a comatose old man that should be put to pasture. Seeing this my family and I advocated day and night, attended meetings, lived in motels, medically trained, made phone calls, and fought to get Dad home, as that is all he wanted.
It took four months before I was able to rent another house to bring Dad “home.” equipped with a ventilator, a G tube, a midline and catheter.
*All of his discharge summaries defied everything they presented.
*All my Dad ever needed was medical staff to believe in him.
Dad came to the home we made, and exercised daily with Occupational Therapy, Physical Therapy, Speech Therapy, getting stronger daily.
Dad got a urinary tract infection and was admitted to the hospital.
For whatever reasons my Father kidneys failed. The hospital started dialysis.
The hospital is currently giving him his dialysis.
The Dialysis Centers and medical staff stated that Dad had to be off the ventilator to be able to come home and receive dialysis.
At this hospital a remarkable doctor did take a chance, giving my Father faith and the patience to come off of the ventilator.
ONCE AGAIN, My Father defied ALL odds and within 24 hours my Father was no longer using the ventilator.
The companies then needed his trach plugged, once again my Father conquered this in 24 hours.
Dad is now ready to be discharged.
I know my father is older, I know he has a lot of medical issues, I know he has to have dialysis, yet, once again; nobody will give him my Father a chance.
Dad gave his life and time to serve 33 years for his country, your country.
The hospital needs to discharge Dad, YET, he needs someone else to believe in him.
The doctor said he would not:

  1. Live through a massive brain bleed….He Did.
  2. Still be able to move and speak….He Did.
  3. Get off the ventilator……He Did.
  4. His trach was plugged with-in one day…He Did. (after 11 months being, on the ventilator.) Dads trach only has to be plugged for the 4 hours while in dialysis.
    I am not sure what his medical discharge summaries are saying now, but all Dad wants is to come home.
    First he had to get off of the vent to receive dialysis. Dad did with-in 24 hours.
    He fought for this country and was on active duty for thirty three years, before retiring. After this long draining year
    fighting for his life. All he wants is somebody to please give him a chance to live out the rest of his life at home with his family. Somebody please give him a chance; when he has proved everyone wrong at each turn and fought against all odds.

First, there is no requirement that a person be off a ventilator to receive dialysis, but I’m glad that your father was able to be weaned as that should make placement in a dialysis clinic easier. Are dialysis clinics refusing to accept your father because he has a trach? If so, there is no regulation that prohibits a dialysis facility from accepting a patient with a trach. In fact, although dialysis facilities are allowed to establish admission criteria that would allow them to deny admission to a patient who requires a higher level or care than a clinic can provide, denials should only be for a limited number of reasons and having a trach is not one of them. Staffing may be the issue. There are options:

If the facility is concerned that their staffing level will not allow them to accept your father because of his trach, if someone in the family or provided by the family has been trained to do trach care, the clinic could allow that person to be at the clinic while your father is on dialysis; or

Your father and a care partner (generally a family member) could be trained to do home dialysis (peritoneal dialysis or hemodialysis) by a clinic that is certified to provide home training and support. Although most home dialysis training is done in the clinic, dialysis regulations allow a clinic’s RN to train a patient and care partner in the patient’s home if that’s what is needed to individualize the patient’s care. You can find clinics that offer home training using the Find a clinic database (http://locater.homedialysis.org/). You can also read about how patients who have trachs or require vents can do home therapies here:
http://homedialysis.org/article/life_at_home/dialysis_with_a_trach_or_vent

If your father is being denied admission to a dialysis clinic because of his trach, you might want to contact the ESRD Network 8, which serves TN at 1-877-936-9260 and file a complaint or grievance:
http://www.esrdnetwork8.org/

You can also contact the State Survey Agency and file a complaint or grievance with them. The TN agency’s phone number is 1-877-287-0010.

Good luck and let us know what happens.