Is Low Diastolic Blood Pressure common with Stage 3 or 4 CKD?

I feel you. My mom wanted to die at home and people get purple blotches on them before they die. Not saying he is dying, but I helped my mom and it's a scary hard road, but I believe that people should have their wishes respected. I am not going to lie though...it was a really stressful situation made 1,000 Xs stressful by family members who were not much invovled but wanted to give their two cents. And at some point for all of us, it is just pain management. And if I could do it all over again...help mom die at home, I would. And I would find ways to do it even better. So enjoy your jorney as silly as that sounds to say. I just remember my mom telling me "This dying thing is easy." And that lightened my heart to know that.

Good advice. Do need to check on that.

When they transfer medical records do they transfer those forms as well?
Probably, but you need to double check that they are accepted as is in your state. My parents lived half time in 2 different states with very different requirements, so needed 2 sets of documents. Good thing they had them too, because my Dad ended up in hospice in the second state.
Sue

So far we have been able to manage the pain. He also has valve problem in the right leg which was identified years ago (and I think now extends to left leg as well) - causes purpura and hard to heal sores. Did cause edema but now not so much but I think because his legs are constantly up that helps on the swelling. Potassium was normal last blood test a year ago - but obviously that could have changed. I think he really doesn't want to know what is happening. Years ago we did fill out all the 'life' forms and daughter has copies as well. Our KY doctor had them. When they transfer medical records do they transfer those forms as well? Thanks everyone for all the 'listening' and helpful suggestions.

The brusing could be low potassium. He needs to see a doctor. He he refusses and he isn't in pain...sorry.

Hmmm - That is a common misperception. Through Medicare, hospice care is for those who are terminally ill, without a defined time limit. That is typically assumed to be 6 months or less, but you can get unlimited extensions if the doctor certifies the condition remains terminal. (See: https://www.medicare.gov/what-medicare-covers/what-part-a-covers/how-hospice-works.)

I am sure if you call Bill's physician (in his presence so he can grant you permission to discuss) and relay all you have told us here, you will get a recommendation for hospice. Through Medicare, he can also order blood tests through home health care so no doctor visit is needed for making his diagnosis, and the tests can cover the kidney function, blood counts, etc. Make sure the doc understands the desire for no more treatments, you just need the diagnosis.

Does Bill have an Advanced Directive (not just a DNR order) in place? (see: https://www.mayoclinic.org/healthy-lifestyle/consumer-health/in-depth/living-wills/art-20046303) Do you or someone else have a Durable Medical Power of Attorney? (https://www.lawhelp.org/dc/resource/frequently-asked-questions-about-durable-powe)

These are two very important steps to take now, so treatments cannot be imposed against his will going forward. If you cannot get Bill to put it in writing, get him to tell you what he wants and record it, then text or email it to his daughter so it is well-documented.

This is a tough time - end of life, no matter how good or long it has been, is difficult. By helping Bill let go on his terms, you are honoring him.
Sue

The last we knew (over a year ago) was he was in stage 3. No idea if it has progressed beyond that or not or what else is happening other than a lot of symptoms. We do know that he has a vascular valve problems and lots of very slow healing sores on his lets and scaling. No swelling like before but he sits in a recliner constantly with his feet up. A doctor would have to use the 6 month limit in order to qualify. No idea if he is close to that or still years, although at 88 years life span at stage 3 shows up at a couple of years (he was diagnosed at stage 3 in December of 2020. Our KY doctor never indicated anything wrong with kidney. Valve and Thyroid problem yes. BP and Gout controlled. He would be ok with hospice at home if it came to that. Daughter also said she would be willing to sell her home and move in to help when he needed it. She has alerted her school (she is a math teacher) that to immediately get her if I called and didn't get through to her. So they all have our back, plus family here. He isn't even up to more than 15 minute visits with family. Exhausted all of the time. Walking to the bathroom wipes him out.

If he will not visit the doctor, is he open to enrolling in hospice? Perhaps you can approach it in terms of "they will help me take care of you, and put my mind at ease that I am doing things the way you want."

We have had home, in nursing home and residential hospice for our parents. It was wonderful as they explained each "next step" and helped us through.

One of our best friends made the decision 3 weeks ago to forego further surgery or treatment for his total bowel obstruction, because he too has a number of other terminal conditions. He agreed to home hospice, and it has helped his wife and daughters immensely in caring for him.

We were able to visit him, in his home, before he reached the stage of actively dying, and it was wonderful to see the support they had. At each turn, the nurse is available in person or by phone, to help them know what to do to make things easiest for him. She orders (and in some cases brings) meds and supplies to help, and secured a hospital bed and other aids, all covered by Medicare, to make him comfortable.

Just one option for someone who is ready to "let go." I wish you peace with his decision, whatever it may be.
Sue

Did you have the liver transplant? You have gone through so much. Prayers with you and your husband.
Bill has told the family he does not want anything done to prolong life - that when he is ready to go to let him. A little while ago he was telling me that he thought he had pills in his hand - but didn't. Felt better after eating Rocky Road for lunch. He is on a major sugar kick - I do try and get fruit and veggies into him as well. Family is in accord to try and keep him as pain free as possible and let him enjoy whatever he wants. At 88 with quite a few health problems quality is more important for him. I just try to figure out by research to try and understand what he is going through. A blood test would tell a lot, but again, he doesn't want one. Just being able to discuss things is a tremendous relief.

I fell a couple of times in the days before my husband took me to the ER. I never expected acute kidney failure because we were focused on liver failure. When I got to the ER my blood pressure and pulse were extremely low. So was my temperature. I was not aware of much that was going on around me. My husband had to answer all of the questions and provide health information. I was given warmed IV fluids because I was dehydrated. They even used heated IV solutions for transport to the regional hospital. This was a complete surprise and most unexpected. Fortunately I was admitted to the ICU at the hospital where I was waiting for a liver transplant (prior to being sent to Mayo) so we were already familiar with the location. That helped my husband a lot.
I am aware that your husband does not want to see a doctor or seek treatment. I believe that is his right. I am, however, concerned for you. What does he want you to do if he fails? As uncomfortable as it is, please have a conversation with him. Tell him you need to call the doctor because ‘you need to know’ what to do. You love him and he loves you - let that be the source of strength that guides you. This is a condition that affects both of you. I am holding you and him in my thoughts.