My mother has been sent home to die with end stage renal failure and cerebral atrophy. She has been on dialysis for 15 months and doctors tell us let her die in peace. I am having a hard time with this. Is there anything we can try before she leaves us. I can't face the alternative of her dying if there is something else to try.

kp2171

first, i am not a doctor or employed in the medical field. i am a chemist with enough background in the med sciences and enough reading and curiosity to answer some questions. there are other professionals here who will substantiate or correct my post.

damage to the kidneys at this stage is irreversible and with no cure to my knowledge. dialysis and transplants are what is usually done. i dont know the details as to why your mother is being categorized as unsuitable for either option.

as for the cerebral atrophy... im not sure exactly how all this came on or how its related. my understanding of cerebral atrophy is a loss of function in general or specific areas of the brain. there are some degenerative diseases that are simply beyond my scope or experience, especially some of the multisymptoms ones with no clearly defined cause.

now, if your kidneys are not functioning properly, you can have confusion and delerium. this, to my knowledge, often can be reversed with proper dialysis.

can you tell us a little more about what happened? what has been explained to you? did the cerebral loss occur before the renal issue (renal problems sometimes come on slowly so it can be hard to know)? give us as much info as you can.

TilNaillon

In may 2004, my mother was given an MRI to see if she had renal artery blockage. The contrast dye is what finished off her kidneys. They did a biopsy on her kidneys and this is what they have told us. She did not have a blockage. They kept telling us she did not need dialysis at that time, however she kept getting worse until she was almost dead. We fired her nephrologist and another stepped in and started her on dialysis immediately. She did pretty good for a short time, but never got alot better. She has been in and out of hospitals for staph infections, etc. Then she started getting disoriented and couldn't walk. We were having to lift her in and out of car to get to dialysis. 2 weeks ago, at dialysis, her doctor told us she was declining and dialysis wasn't really helping her. We were told she didn't have too much longer to live. When we came out of the meeting, my mother had laid her head down on the dialysis chair and we went to see about her, her doctor was with us. He decided to put her in the hosp. and run more tests. she couldn't talk very well so he decided she had had a stroke. After 2 days in the hosp. he told us we should put her on hospice and let her die in peace because she failed a swallow test. She is now eating very well to have failed a swallow test. Her mind has gotten some better, but I am afraid maybe we shouldn't have taken her off dialysis so quick. on her ct scans, it show gray matter, however the neurologist has said she has early onset dementia. I don't want to just set and watch her die.

J_9

TilNaillon,

I am sorry to hear this about your mother. It is so hard to let go sometimes. You do not mention her age. This is important. Is or was she ever diabetic?

Unfortunately end-stage is just that, end-stage. Here is the definition of End-Stage Disease from Mosby's Medical Dictionary for Medicine, Nursing, & Health Professionals:

"End-stage disease: A disease condition that is essentially terminal because of irreversible damage to vital tissues or organs. Kidney or renal end-stage disease is defined as a point at which the kidney is so badly damaged or scarred that dialysis or transplantation is required for patient survival."

Again, you do not say how old she is so I am wondering why they have decided to discontinue dialysis if indeed they have.

The definition of atrophy is quite long, so here goes:

Atrophy A wasting or decrease in size or physiologic activity of a part of the body because of disease or other influences. A skeletal muscle may undergo atrophy as a result of lach of physical exercise or neurologic or musculoskeletal disease. Cells of the brain and central nervous system may atrophy in old age because of restricted blood flow to those areas.

I am sorry I am not more helpful, but to understand exactly what the definitions to the diagnosis are sometimes helps.

You may want to speak with the doctor regarding the dialysis and see if he will continue, dialysis is usually done only 3 days per week. You also need to know if your mother has a Do Not Resuscitate Order, which could be in records without your knowledge. However, only she can tell you that. The doctor most likely will not be a liberty to discuss anything in her record with anyone without her express permission.

I will keep you in my thoughts.

ladymac

My aunt has end stage renal failure. I am her caregiver for the past 2 years. It is unbelievable the things Drs. and assistants and nurses have done to her or rather tried to do. She is trying to get on a transplant list now. She is 65. I saw her dilirious in the hospital because of the medication she was on. Do research on meds. Know what they do and what they shouldn't be mixed with. My aunt had to have her sensipar dosage raised to lower calcium levels in her blood because it causes confusion. There was a time in the ER she was at deaths door and I convinced her nephrologist to admit her overnight until I could bring her home from the rehabilitaion facility she was in. I almost had to fight him for it. Once she had a broken leg and two different ERs sent her home in pain. The following week I had to make an appointment with an orthopedist to set and cast it. They had her on so much morphine in another hospital that she had a drug induced psycosis and the Dr. wanted to test for a tumor or alcoholism until I told him what was wrong. You have to be observant and ask questions.

Jane Smit

Hi, I'm in 3rd stage renal kidney disease. I have seen my brother in law die of kidney by his choice by stopping his dialysis. He was diabetic, as I and suffered from hypertension as I do.
Yes its hard to watch someone die, but I'm told by eating habits you can keep the kidney to maintain where it is, reversal is depending on the type of kidney disease your mom has. We don't have enough information on your mom, but have you gotten other 3rd and 4th opinions.
My kidney reading went from 80% functioning to 48 in one in a half year. I'm told if I was told what to do with different medications and food, I could have kept my functioning at 80%. No one said a word to me. My %function cannot be changed. So I pray alot, and I will pray for your mom and you. Good Luck
Can I ask, how does your mom feel, and what is her discission, because thats what really counts.

Derek Plumber

Recently I have been diagnosed with Advanced Renal Disease from using lithium for 30 years. Replacements of lithium do not work for me, so I have to keep taking it. It should come as no surprise that I am terrified.

I have experienced stories like the one that leads this discussion, my mother died of Parkinson’s. I learned that it is not “living” if you merely exist without a quality of life. I am going to die, and it feels like no one is giving me straight answers. What if I skip dialysis all together? I guess the blood stream backs up with waste. How does it feel? Is it painful, or does life quietly slip away?

I do not want to tie up the emotions and resources of my family with my renal problems. Would it be better to just die of kidney failure? Or, should I look into the Death with Dignity in Oregon or Washington State which means a costly move?

Derek Plumber

It looks as though I can answer my own question. I spoke with Compassion and Choices. Compassion & Choices If I skip dialysis according to them it is "not a bad way to die."

The economy in Oregon is awful, and it has effected everything from finding a doctor to patient care. There is 12% unemployment in Oregon, forth worst after Michigan, California, and South Carolina.

Compassion and Choices will help me locate a "guide" to get me through a legal, natural death in my own State. Of course I wish I did not have to make this choice, but there is no quality to my life anymore. I just exist in a vacume of terror, void of real feelings. The sooner I die, the sooner my loved ones move on to a new start. It is a practical solution, and a lot better than suffering through a downward spiral of deterioration. Sure, it scares the hell out of me, but I have found what I was looking for.