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[theresathomas]

I'm nearing renal failure again & have no wish to restart dialysis. The few loved ones that I've told did not take it well & I'm feeling a bit selfish. I can't seem to find the right way to explain that this is my choice while trying to also comfort them. Any one have any words of wisdom?

[KidneyCoach NKF Ambassador]

They are more scared of losing you at the moment. Do you have a therapist or counselor, pastor you can discuss your concerns? How long since you last were on dialysis and how long were you in renal failure? You may want to make a list of why you don't want to return to the treatments, your biggest fears or concerns. Share these with your loved ones. Be calm and openly listen to them.

You could even invite them to join you when speaking with you therapist etc.

Are you younger, older? Are you just afraid?

[jazz--]

My son has been on dialysis for over three years now and I can relate to both you and your loved ones. If you don't mind, how old are you and what type of treatment are or were you doing? My son is on manual peritoneal at home. He tried the machine but it had so many alarms going off we switched back to manual.

Is it the schedule you need to keep, the lack of physical help with your treatments or just feeling worn out from everything that needs to be taken care of or something else? I know there are times when both my son, he is 44, and I want to give up, but something keeps us going. What happens is he talks me through the difficult days and I do the same for him. The rest of the family support us in other ways such putting up with our complaints. Do you live alone or is there someone there to help with your daily chores? I am retired so I am able to assist daily with what needs to be done. This makes a big difference.

It sounds like you are very concerned about your family in all of this and they are concerned about you. It is so important they understand this is a decision that was hard to make. Is it a red line for you or are you open to trying again? A support group like this might help you make a different choice. Do not be afraid to talk about why you are making this decision as input from others may help you and them at the same time. Depression may be in your decision making process so make sure you are healthy mentally too.

Are you on the list for a kidney? My son is overweight from the medication he takes so he needs to loose weight and that will be a long process. Dialysis is something I did not know very much about before we started the process. It is something that requires great strength; physical, mental, and spiritual for us. I hope you can be comfortable with your decision whatever it will be and not feel that you have let others down. Remember, you are loved by your family and they are afraid you are making the wrong decision.

[theresathomas in reply to jazz--]

Thanks for your kind reply. I'm 52. I live alone. Have 2 adult children w/ families of their own. I have a congenital form of CKD. I was misdiagnosed w/ Benign Familial Hematuria @ age 10. When I was 27 I had a kidney biopsy which revealed TBMN. Was told no more children, no NSAID's & that the prognosis was good. Last year I wasn't feeling so well. Thought I just had the flu. Went to bed one night & woke up in ICU 3weeks later. My son had come to check on me & found me unresponsive & blue. I had empyema, sepsis, multi organ failure, respiratory & metabolic acidosis, critical illness myopathy & the list goes on. I spent 3 months in the hospital. ICU, med/surg & rehab to learn how to walk, speak & swallow again. I lost just over 60lbs while there. I'm 5'8" & left the hospital weighing 104lbs. With the exception of the last week there, I was on dialysis the entire time. I had to continue w/ home health PT, OT & nursing. Because of the damage done to multiple organs I'm not a surgical candidate for a kidney transplant. When I was discharged my kidney function wasn't great but not bad enough to resume dialysis. Despite medications & dietary restrictions, my kidney function has been gradually decreasing. My nephrologist has told me that I will go into renal failure & that I also need to be vigilant against any infections or trauma. I do have a problem w/ depression although it is life long & not a result of my decline in health. My issue is quality of life in which I have none. I'm home bound & very limited in what I can do. It's a good day when I can do dishes. Even if it takes me hours. I cook a batch of something about every 5 days & eat that until it's gone as I can't physically tolerate cooking every day. I'm embarassed to admit this but bathing is grossly infrequent as it leaves me weak & shaking. My family is wonderful about e mailing, texting or calling me to check on me but I seldom see anyone. I'm mostly to blame for that because I've subtly pushed them away. I am 100% certain that I don't want dialysis again. I just need to find a way to make it easier for my family to let me go. It's hard because I know how much they love me & I remember how happy they were when I finally woke up. Even if the kidneys weren't a problem, I would still have no quality of life. There may be another issue as well. My mother passed away in 2008 after being ill for 6yrs. My father & I cared for her at home. I feel fortunate that I was able to do that for her, my father & my family. I should probably also mention that I'm a RN. But watching her slowly die took a great toll on all of us. She was only 60. I never truly knew what a broken heart felt like until she became ill. I can't have my kids go through that. Your son is 44. My son is 29 & my daughter 27. Our kids may be adults but we're always their Mom & forever want what's best for them.

[1958Omega in reply to theresathomas]

May God bless you as you go through this. I’m 54 and three and a half years ago an outpatient foot surgery turned into sepsis. In one night both my kidneys and liver failed. I have a wonderful and supportive wife and two 13 years old kids. I was told to just go on hospice care and not even bother with dialysis as my case is terminal. In order to be here as long as possible for my wife and kids I chose to do anything possible to try and extend my life. Statistically these two organ failures are overwhelmingly fatal within four years. I have had many surgeries and currently go four days a week for seven hour dialysis sessions each day. I’m weak to the point that it is impossible to walk, cook, and grocery shopping. I sleep around the clock between treatments. Quality of life is very poor. Daily round the clock nausea is a misery. What helped me was to work with a palliative care doctor who has been wonderful in reducing my nausea.

If I eventually need hospice this doctor can provide it. I embrace little things each day. Sitting in warm sunshine, watching birds and listening to music is relaxing for me. I love talking and joking with my wife who accompanies me and is truly a caring person. I love speaking with my kids, watching them grow up. We have cats and I love interacting with them.

I totally understand your dilemma. The right choice for different people may vary a lot. If you haven’t consulted with a palliative care doctor please do so. They can offer guidance to help you and the family with whatever you decide. Please update us. Welcome healing prayers from friends.

Gary

[TaffyTwoshoes27 in reply to 1958Omega]

Wow, that was an incredibly emotional, sweet post. I can relate on and off with several posts here. I don't have children and my two remaining siblings are not supportive with me or each other and we do not live close in proximity.

I think about "letting go." I get tired of the routine of PD with the machine 7 days a week, 10 hours at night. It is a lot of work for a single, 64-year old woman. I've done my best to stay engaged socially (church, friends), but lately I feel myself isolating and pushing people away.

I am relatively healthy compared to many people who post their health issues. I feel empathy for you all. I can relate to the overwhelming tiredness; feelings of worthlessness; not having the energy to clean the house or even take a shower every day; and cooking...ugh...I always hated cooking and now it is a life-sustaining chore!

I like the suggestion of the paliative care counselor. They may be able to counsel a patient's family as well so they are prepared for what is down the road.

I feel immensely sad for all of us dealing with these life issues.

God bless us all.

[1958Omega in reply to TaffyTwoshoes27]

Amen! If nausea is a bad problem I found that a Zofran tablet combined with a cannabis oil capsule gives me up to four hours of relief. If you are in a legal cannabis state it is worth a try.

[Nullity in reply to 1958Omega]

Sorry just reading this … two years later lol Any idea how transplant team treats cannabis oil? Thanks and hope you are doing well.

[TaffyTwoshoes27 in reply to Nullity]

I have thought about the same thing, but I've been hesitant to ask my transplant team. I'm not sure whether CBD oil is legal in the State of Georgia (I think it is), but I worry that they would think it was a dependency. CBD oil certainly has helped people with anxiety and pain a great deal. Maybe I'll get up the courage to ask about it. I recently learned that my transplant hospital wants me to do yearly evaluations now after being on their wait list for 7 years. My transplant coordinator tried to make light of it by saying "Well, just think, it may mean you're closer to transplant!" (BS).

When I recently attended a Zoom meeting with the nephrologist for the hospital and other patients, he said O+ wait listed kidney patients can expect to wait TEN years in the Atlanta area for a transplant.

BTW: I get Alerts on HealthUnlocked that someone has replied to something I have contributed to, so if it is 2 years or more when you find something that peaks your interest, please feel free to comment!

I hope you are doing well. 😊

[Nullity in reply to 1958Omega]

Just finding this post two years later. Praying you are doing well. This post hurts my heart for you.

[jazz-- in reply to theresathomas]

Your kids are still young so I bet they are busy and it is up to you to tell them you need more help. It sounds like you are really overwhelmed with just the day to day activities and having one or both of them stop by once a week would be a great help. Now is the time to have them both over and work up a plan to make treatment easier for you. taking out the garbage, fixing some meals, getting the mail, helping you with correspondence or setting up someone to stop by once a week could make a difference.

As a RN you know that being alone and unwell is not the best prescription for recovery or making a decision to have or not have treatment. Can your doctor help you with finding assistance? Maybe a student after school could help or come over on the weekend.

If you family is not close enough to see you weekly, then they need to help you find someone that can help you with bathing, food and other items. I am sure the illness of your mother is affecting your decision as you do not wish to be a burden to your family. But families are there for the good and the bad. They may want to help but don't know how. Tell them what you need even if it is only to see them more, not talk on the phone or internet. You need a extra pair of hands and someone to talk to.

I hope they respect your decision, but you and they, still have options to explore.

Take care.

[TaffyTwoshoes27 in reply to theresathomas]

I can totally relate how you feel about the care you so graciously provided to your mother, watching her wither away and your feelings of helplessness. Six years is a long time of caregiving.

I watched both my parents die. I lived close to them and they were my world. Within a 5 year period, I watched my grandmother (who lived with my parents), my dad and my mom die. Our remaining family split apart and we rarely , if ever, communicate wih each other (we were so close growing up).

I pray you and your family come to terms with your decision. It isn't easy for any of you, I am sure. Peace to you all. 🙏🏼

[jazz--]

I have been wondering how you are doing? I wanted to check in and see if you have been able to get anyone to help you around the house and with you personal care. Sometimes just the little things will make a big difference in how you are feeling.

Did you get to speak with your children and are they willing to get more involved with your care? I do not think my son would be able to do everything required by himself. We live in the same house so that makes a big difference.