Cirrhosis Diaries. Post 2.
Two Sundays before Christmas, my 84 year old mother, who lives with us, does not feel well. She is sick to her stomach, but well enough to walk with her walker through our house, down two steps, and, with assistance, get into my Mommy van.
I stay at the ER from 8:00 PM — 1:30 AM when she is admitted. Yes, she has a UTI. Good, I think. We are on our way to healing. She will be home before Christmas, which she always really loves.
I walk into her hospital room the next day, and some medical professional, maybe her attending physician asks me, so, how long has she had cirrhosis?
Excuse me, what?
I have dragged my mother from doctor to doctor since she came to live with us the fall of 2017. Now I know, boy do I know, that since at least October 2017, she has had typical symptoms of fatty liver disease, which by now has turned into cirrhosis. Doctor after doctor treated her symptoms, symptoms which are completely typical of either disease.
No one tested her for liver disease. Not her family doctor, not a nurse practitioner there. Not the dermatologist we took her to from there due to her nonstop terrible itching last summer. Not the doctors at the same hospital the summer before where two skin tears led to two types of infection at once.
At this same hospital, the attending doctor said this to me, and I paraphrase, “Well, your mother has low platelets. I guess it is just genetic. I have this, too.” I did not ask him if he had done a genetic test. I believed his BS. Who cares what you have, dude?
Easy bruising. Easy skin tears. Itching. The nurse practitioner treated her for gout twice this past fall — swelling. Lots of swelling.
By early fall, her body had started to change shape. Her weight had shifted to her middle. No doctor commented on it. No one checked her middle for swelling. I had no idea why this was happening. I have a PhD in Science and Technology Studies, not in gerontology. Our town has no out-patient gerontologist anyway.
At the hospital, by midweek, her speech has started to slur. I track down the attending physician, and she attributes this to ammonia back up, and gets my mother on a regimen for her bowels to move.
The Friday (Dec. 20) before Christmas my mother is transferred to a nursing facility for physical rehab. She is psyched to watch the impeachment. She keeps commenting on it. We are chatting some about that. I start to talk to her that maybe now is the time for assisted living. She is lucid.
Sunday, Dec. 22, 6:30 AM I receive a phone call that my mother has fallen out of bed and hurt her leg. When I arrive, I see that it has been poorly bandaged.
I come in in mid-morning, and she is slumped over in a wheelchair sitting near the community TV. Unresponsive.
I try to take her out of the facility but a nurse talks me out of it. Says this is how cirrhosis patients get. I am like, wait, she was feeding herself not more than 48 hours ago.
My mother is lucid for about a half an hour that day — I have to feed her her food.
How do we go from upbeat and lucid on Friday to this by Sunday?
I should have taken her to the ER.
My mother-in-law comes for a visit late afternoon and we notice water pooled at my mother’s feet. We look around for how we spilled water, then I touch my mom’s legs.
The water in pools is coming out of her legs.
That evening I ask review her medications as I had a suspicion she was not on a diuretic, and a nurse and I discover this. He contacts the Nurse Practitioner. No doctor is called. Someone along the way has majorly screwed up and not put the diuretic into the protocol. No one at the facility caught that this had happened. They blame it on the hospital.
That evening, I massage her legs and large, four — five inch blisters form, bubbling up with fluid. I massage and they begin to burst, and her legs weep, weep fluid. She soaks through five or six bed pads, more towels.
At the hospital they had drained three liters of water from her abdomen. It blows back up like a large balloon.
I assist the nurse to bandage her legs.
It takes until later that evening to get my mother on on a diuretic. She had been taking medication to help her liver cleanse her body, but that fluid had had nowhere to go.
I stay until 9:30 PM until she has eliminated.
I am later told by someone with medical knowledge NOT with this facility that had I not caught this, my mother would have died.
I also ask about the diet that she is fed, and I am told that diets cannot be tailor made — that generally she is on a low salt and low sugar diet. At home, my mother eats NOTHING with high fructose corn syrup. I begin to bring in food that follow the American Liver Foundation guidelines.
Monday, Dec. 23, I arrive at 7:30 AM to wait for the nurse practitioner, who proceeds to tell me my mother could die at any moment, and that she was going to recommend hospice. My mother is unresponsive that morning.
The nurse practitioner convinces me I ought to release my mother to a DNR — an order for Do Not Resuscitate which I HAD NOT DONE on the Friday prior. I have not yet signed this release.
She also informs me that my mother should not be forced to eat.
The issue is on the Friday, only three days prior, my mom had been eating just fine and able to comprehend what was happening.
I return that afternoon, and someone has fed my mother some of the yogurt I left behind. She awakens enough to eat that and other food I have brought, and she eats the facility dinner, too. I feed her that evening.
For the next four or five days, I feed my mother, by hand, lunch and dinner — and do not force her to eat. She wants to eat.
Dec. 23, 24, 25, 26, 27, 28, 29 pass— and she begins to be able to feed herself some again.
By Dec. 30 she is lucid again. She is not as alert and able to comprehend her situation as she had been on entering that facility on Friday, Dec. 20.
That week I find someone to attend to my mother’s bed sore and I also assist with changing her legs’ bandages. On Friday, Dec. 27, I am there when the nurse practitioner comes and I discuss her lucidity and getting her back to where she was when she entered the facility.
Under pressure from me, the nurse practitioner (NP) suggests changing her liver medication. Medicare usually, I am told, does not pay for the “good” stuff until it is shown to not work. It has been wreaking havoc with her blood sugar levels. The NP says she will advocate for the good liver medication.
My mother does not get the good stuff till after the weekend. There is immediate improvement in lucidity.
Her legs stop leaking for a while, but they start again a week or so later. I get her a fancy foot stool, but I am told that your legs have to be higher than your head for that to help with the swelling.
I respond that at the hospital I had been told my mother needs to sleep in a V shape (torso up, legs up) due to her liver and the fluid around it. I kept having to get the bed adjusted the first two weeks until the staff finally started doing this.
My mother has some better moments, but she has not yet returned to the self she was of Dec. 20 before this happened.
I am at loss at what do do.
She has slipped back to not doing well. I read forums on Facebook. People forty years younger struggle so much with all the issues my mother has: food aversions, swelling, skin tearing, exhaustion, elimination, fluid intake, fluid out-take, illness-induced dementia, simple daily activities.
I scan all these people in terrible pain. People who are with it enough to at least type into a forum and get answers from others. I will never knock Facebook again. It provides a space for people around the world to chime in and talk about their disease, their loved ones’ disease. Lots of folks from Britain. Lots of young people. All kinds of reasons for cirrhosis. Many with stories or physical issues that seem lifted straight off a Hieronymous Bosch painting.
A guy in the bush fires in Australia is chatty — trying to contend with his cirrhosis while fires rage.
Good Lord, I think, what fresh hell is this?
She has not been doing well the last few days. Her physical therapist tells me when she goes in to their center, she does not want to do anything.
I call my mother’s actual physicians. No one, of course, has the urgency about her state that I have. This doctor calls that nurse. They wait for calls back.
I am convinced that the poor diet at the nursing facility has contributed to this, but that is another post for another day.
I have lost faith in the nurse practitioner at the facility, but my mother is still there.
I can’t bring her home. I could not get her up into our van now.
How would I keep up with her medicines? Her food? How could I manage our farm? Our son? Get back to the full time work I am looking to do?
I truly don’t know what to do.
A friend online sends me the number for a Caregivers Hotline. I plug it into my phone. Here it is, if you need it, too: 855–227–3640.