well….I guess this is it: im going to die... - Kidney Disease

Kidney Disease

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well….I guess this is it

InTheSky1 profile image
27 Replies

im going to die soon….but im ok with it

I had ten yrs to think about it

so Im fine with leaving this world behind….it’s obviously a rational and well thought through choice

(I absolutely refuse any transplants or dialysis or what ever is offered)

….I think its important to be careful with opinions

Sadly the psyically healthy dont understand..and continue to just finger point

personally I’m at peace with my decision

I feel spiritually calm/at peace with it….

I am looking at hospice….if anybody has any hospice experiences they would like to share

(from a patients view)

or just good general stories

I would like to read it….and get a idea of what it will be like when I’m there as a patient

27 Replies
jodaer profile image
jodaer

No judging from me. I don't have any experience with hospice but wanted to know you have my support. I have the same thoughts as you have had.. I'm just not at the same place as you are. Sending tons of peace and love your way.

RoxanneKidney profile image
RoxanneKidney in reply to jodaer

same my brothers and sisters

Bassetmommer profile image
BassetmommerNKF Ambassador

HI Sky

It is a hard decision to make but understandable. I am a trained hospice support person. I hope you find a good service to help you and your family or friend support system. Hospice is there to make sure you are comfortable, and your needs are met. There is no judgement, only support, an ear to listen, and a comfort for your friends and family. Make sure you have your paperwork in order such as a DNR and your wishes such as medications for comfort. Also, think about organ donation as it is a way to have you help others in need. What better way to give back? I am sorry that this part of your journey is ending, and I truly hope you find peace in the next part of your journey.

HisLittleOne profile image
HisLittleOne

I don’t have hope to offer you medically.. but I can give you great hope of eternal life and joy after this existence…Life just goes on in another dimension and never ends. The hope that is certain is that never ending life with God in Heaven and given as a free gift to all of us after our very brief time here on planet earth…And that wonderful joyful healthy beautiful eternal life is a gift given to us through the Son of God – Jesus Christ. The words of Jesus: “whoever believes in me and dies yet he shall live, and whoever lives, and believes in me, shall never die” (John 11:25-26) BELIEVE THAT WITH ALL YOUR HEART and the Savior will receive you with open arms and you shall have a grand entrance into Heaven and a wonderful forever life! No else can guarantee or make a promise like that but Jesus the Son of God! And all it takes is child-like faith in Him…Like a little child, trust Him to save you and you will close your eyes here on earth and open them in Heaven looking into the eyes of God! How beautiful and awesome that is!!

Praying for your peace and comfort and faith to take you home where there will be no more sickness ever again; only joy unspeakable! God bless you …sending you a big warm hug from my heart ♥️

hardrock430 profile image
hardrock430

I dealt with Hospice during my husband’s last week and a half of life and they was there for me as much as they was for my husband, so please let your family and friends know that they are there for them also, no judging from me and I feel like you do, I’m just not at that stage yet, you have my love and prayers

orangecity41 profile image
orangecity41NKF Ambassador in reply to hardrock430

My wife was under hospice over a year ago, and they are a helpful service, and still contact me.

Monkipatch profile image
Monkipatch

Matthew 7:1 Judge not, that ye be not judged. You do what is right for you, it is your choice. I have had experience with Hospice, some good, some bad, so please be sure and check around and look at reviews if at all possible. Of course, this all depends if you have more than one Hospice group to choose from.

You have found your peace, that is obvious from your message. You just need your loved ones to understand and give you their support in your choice. So may God Bless you and your family through this journey. It can be a very beautiful time to share stories and memories. That is what I did with some of my family and I treasure that time greatly. I pray it will be done when my time comes.

Sending you love and support on your final journey. Go with God.

Aidancree profile image
Aidancree

Dear InTheSky1, thanks for being willing to share your journey with this community❤️. As a former pastor and hospice chaplain from my perspective hospice is a wonderful gift at end of life and those involved in it are truly special through their dedication. And please know that it is my sincerely held belief that there are many routes to our journey into the peace of eternity, like the symbolism of a multi -colored rainbow.

Peace and blessings

Creed

Irelandy profile image
Irelandy

Hi Sky, it is so refreshing to read your decision and it takes a lot of courage to do so. I, too, have had a long time to think about dying and im at ease with it too.

Good luck with the hospice.

Turtlepad513 profile image
Turtlepad513

Hi Sky,

Wow, what a gift it is to be at peace about leaving this world. May we all feel so calm and at peace when it is our turn. While I have not had much experience with hospice, I would say, I think one decision you will have is to do hospice as an inpatient or at home. Do whatever feels right for you.,

aben profile image
aben

I unfortunately don't have any advice or recommendations, but I do hope that you find the perfect hospice for you and that they are able to help make things as peaceful as possible when the time comes.

I hold no judgement about your decision, that decision is yours alone to make. I am curious as to how/why you came to that decision though. Why reject all the treatment options available to you? You can refrain from answering if that is your preference, I just figured that maybe since you were willing to share this on a public forum you might be open to also sharing your thought process.

LLWegeners profile image
LLWegeners in reply to aben

Hi Aben. I am a lucky one and am blessed to have gotten a second chance. In 2017, I contracted an autoimmune disease that trashed my kidneys. My creatinine was 8.5 and a GFR of 8. I was on hemodialysis for 3 months then went to PD for another 6 months. By the grace of God, my kidneys started recovering and now I am at a GR of 31. I am forever grateful that this happened. However, being on dialysis was no fun at all and I dread the thought of ever having to go back again. The thought of not doing it has crossed my mind and it scares me to death. I don't feel like it's time yet so I'm hoping upon hope that my kidneys stay stable where they are at least for several more years. Probably somewhere down the road, I'll have to decide my own fate unless something else does it for me.

hope1419 profile image
hope1419

Hi there, As aben, I am hoping you share your decision making process. You said you have thought about this for 10 years. How come? I just want to know because I can relate.

The first time I was told my kidneys were failing, my child was 8. She was my motivation to do every thing I could to stay in stage 3B. However 4 yesrs later, when she was 12, I had astressful year, dropped my GFR, and had to get on "the list". I thought iwould just live aslong as I could, but she was just 12. So, I got listed and looked for a donor. God sent me one, whrn I was ready to accept it, covid hit, and I didn't get transplanted. Then I thought as you I will live as long as I can. I got stable. Other 3 years have passed. My daughter is now 16. I think, well, she is almost an adult. I just need 2 more years. I have made two decisions and have them in writing. 1. I eill accept the transplant because ai would love to see my child become an independent woman. 2. If the transplant fails, I do not want dyalisis. That. Would be the point, where I will be in your position. I have thought of dying, and I believe it's a personal choice. I would rather die than have me and my family go through the ordeal of dyalisis, just to "live" a few more years.

The stressor that dropped my kidney function was the sickness and death of both my parents the same year, and for who I was the caregiver. They died 2 months apart after lengthy hospital stays. My mom made it to hospice for less than a week. However, they were great during the process. You only get to be in an institution for the last few days, otherwise you stay at your home, which is what my mom wanted. Talk to your family about your decision, leave it in writing, and make sure they accept it and respect it, even if they don't understand it.

So, I get your point and your position. I would love to hear your thought proecess if you care to share.

Rognoni profile image
Rognoni

Hi Sky, no judgement from me neither, may God Bless you.

My experience: I am 80 years old, I’ve been on dialysis for the past 4 months, it was a very difficult decision-HD, PD or NONE. After speaking with several people who had to confront the same decision, based on my circumstances, I decided to do HD. I had some complications at first but I’m adjusting significantly. The days that I’m not on dialysis are very rewarding for the discomfort of the treatments. ONLY MY EXPERIENCE.

May peace be with you.

orangecity41 profile image
orangecity41NKF Ambassador in reply to Rognoni

I am 81 years old with CKD. Thanks for sharing your experience Can understand is a big decision on type of dialysis. I would likely accept Home Dialysis.

ICE187 profile image
ICE187

I have watched hospice on 3 occasions. They were GREAT. When my time is near, I hope that I can have a hospice team at my side. Just know, that life continues. I went from agnostic to a full believer after several non coincidences. To be honest, I now look forward to dying. Enjoy your journey. God bless you. Isaiah 41 10 Fear not, for I am with you.

S_dillow profile image
S_dillow

good journeys and be comforted

Nolan21 profile image
Nolan21

I have had 2 kidney transplants and need another. (2004-now) I have tried every type of dialysis at home and in center. I was lucky enough to see my kids into adulthood and I have many wonderful grandchildren. I just can’t go through it all again. I am signing up for a third transplant but will not do dialysis again. My Egr is 17. So I too think about dying. I will be fine.

TopazForests profile image
TopazForests

I will add my hope for peace in your decision and a peaceful transition from this life. My only experience with hospice was with my parents. Both were in their mid-90's. My dad had severe Alzheimer's and hospice was wonderful with helping him in the Assisted Living home. They were there when he passed to help support my sisters and mother. My mother wanted to come home after Dad passed. Both sisters were living in our parents' house and brought her home. Through the next 8 months, hospice was there to help bathe Mom and also to help support my sisters. Mom was able to pass at home and hospice was there with my sisters. They were wonderful through all of it.

GlitterGrl profile image
GlitterGrl

Good Morning Sky. I read your comment yesterday, and found it on my heart for the last 24 hours. I just want to add Please don't hesitate to change your mind, It's OK I am a retired Oncology Nurse. I have seen so much. We have had patients sign a DNR only to wake up the next morning and desperately want to change their mind. Also with no judgement. As sick as all of us are on here, this battle gets so exhausting hard. Our emotions are all over the place. IF you do change your mind, please know no one will Judge you. It's OK I also know what you mean about people who aren't sick to just dispense words about "Our Illness" like Oh just do this or that, with little true caring. Trust me, someday they will be in the same place we are. It's your decision. I do believe in Heaven. This decision is only yours. Just never think I can't change my mind now, I have told to many people. Just know If you do change your mind, we will all be here to support you and lift you up. God bless you. Sherry :)

Dana66CKD profile image
Dana66CKD

My mother and father both had home hospice. Dad wanted to die at home. He was ready at 88 years. My brother and older sister were there. Mom passed a year and half later. My sister had moved into her home and took care of her. Hospice was helpful then. Just make sure your family has good communication with hospice and they have all measures in writing.

I can relate to your decision. My thoughts are similar, but maybe I'll feel differently tomorrow... IDK?

Peace be with you. Hope you have family to surround yourself with as your journey progresses. Blessings 🙏

Stage5 profile image
Stage5

I’m sorry to hear. No judgment on your decision. However if you don’t want dialysis or transplant then there is another option that may help . I have tried a holistic approach; my husband ( in 40’s) who is now palliative care he is not fit for either the above options . So with him we have cut his intake daily of food ( peg feed) by reducing a 1/3 this has stopped the sickness and itching? and also give him a prebiotic supplement ( acacia gum fibre ) to help detox and clean kidneys. This slows progression of the rapid decline of kidney function for a little bit longer . How long ? Don’t know but it’s worth trying? It may give you 1-3 years or more if you want try a gentle approach? God bless and prayers your way whichever choice you choose.

maven123 profile image
maven123

I guess we are on the same train. You are a few cars ahead of me. I have been stage 4 for kidney failure for almost 7 years. No real symptoms. GFR mid 20's and holding. Waiting for the next shoe to drop. I have no idea why I am still around. I have had bladder and prostate cancers- both removed. A twisted intestine. Covid killed my wife and I am still recovering from covid myself after two months in the hospital and 16 months in a nursing home. I will be moving soon. I have also made the decision not to have dialysis. I have no one to take care of me and I have concluded enough is enough. I have researched it all. I am not sure if I believe in a life after death. I only know that from birth to death I will try to be the best person I can be. I have helped many with my career as a family mediator and a Realtor. I am most proud of the children I have helped. I am not rushing things. I will let nature take its course. I expect to be around for another year or two. Each day is a blessing. I have come to terms with my future. michael garelick minnesota

Papito283 profile image
Papito283

absolutely no judgement. i just lost the love of my life to end stage renal disease. i believe he is at peace now,no pain,no treatment. only you know how you feel inside.. sending love and peaceful vibes your way.He fought a long courageous battle

Whitetail66 profile image
Whitetail66

It’s bright and sunny here today, but after reading your post, it doesn’t seem as sunny anymore. I am sad to hear your situation, but I’m glad you are at peace with your decision. The thing that comes to mind, is the book by Evan Alexander, called ‘Proof of Heaven’. It is a fascinating read, even if you’re not a person of faith. I wish you nothing but peace and comfort as you enter into your next journey. Safe travels, we’ll be taking that journey soon enough ourselves. Put in a good word for us.😉

Blackknight1989 profile image
Blackknight1989

sometimes I wonder if the decisions I’ll make aren’t made easier because I know I am ineligible for a transplant? I suspect I’ll follow the same road as you sir. You who go before us with such an acceptance and show those of us how to do it right are invaluable. Peace be with you on this final journey on this side.

Wunderkid profile image
Wunderkid

Absolutely no judgement here, InTheSky1 and I commend you for making your choice in a considered and rational way.

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