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Polysistic End Stage Renal Failure Disease.
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mammysandy posted:
My father is 82 and has End Stage Renal Failure. I see him declining daily. Dialysis 3 days a week, depression, sleeping all of the time. I am now his caregiver. Mom passed away 2 yrs. June 30th. He is griving, as we all are. It was a shock. She also had Kidney Failure, but not as severe as dad. He has Polisystic Kidney Disease. He has lost the will to go anywhere, or do things. I just don't know how much more of this I can take. I love my daddy, but on the other hand I don't want him to suffer either. His doctor is wonderful.
He has told me that if and when dad decides he has had enough, then he will take him off of dialysis and turn him over to Hospice and he will die. I am fighting a loosing battle here. What more can I do?
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MrsCora01 responded:
I'm so sorry for the position you are in. It is tough to watch any family member with health problems, but it is especially hard when you are taking care of the ones who once looked after you.

How long has your Dad been on dialysis? Sometimes it takes a while to get the prescription right and once they do he will most likely feel better. Sorry I can't give you any more advice. If your father does decide that he no longer wants to take dialysis, it is good that he has options so that he will be comfortable. I'm hoping that you are all close enough so that it can be a family discussion, and not something that he will decide in a vacuum. The good news is that if this is his decision, he can be made comfortable. While I have no personal experience, I do know of a 2 people who made this decision and they passed away gently, simply falling asleep.

Cora
 
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SingingAngel responded:
My mother is 78 years old and has PKD and is in end stage renal failure. She also has stenosis of the spine causing her to be in immense pain. She's had 5 hospital stays this year. She requires regularly increased doses of pain pills to try and manage her pain. They always fail. We fear she will require morphine in amounts that will render her non functional. She's just beginning Palliative Care and is considering going off of her dialysis to end her misery and switching to Hospice Care. It's sad to watch her struggle with the decision but she fears the unknown. She has other considerable health issues as well. It's very hard, you want to support them with whatever decision they make but it's so hard to watch them suffer that sometimes you just want it to be over as well. Then I feel like a bad person for feeling that way. This is rough stuff for everyone.
 
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Tikasiamese responded:
Hi Mammy, I am so sorry about your father. I was just diagnosed with PKD in October 2009 (at 43). This email has taught me that this could happen to me when I am 80. I am sure he did everything possible to deal with this long winded dreaded disease we have. Sounds like he had this for years. Hopefully he will turn himself around for you and your family. I hope he will be an inspiration to us PKD people.

Jen
Jennifer
 
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mammysandy replied to MrsCora01's response:
Dad has been on Dialysis 1 yr. in July. His kidneys have shut down now. No urine at all. He is at the end of his rope. Little things get to him more than they ever did. I cry, get mad and don't understand all of this. He has had this disease for along time. His only living brother has the same thing, but he refuses to take care of himself.
I am dad's POA, and he wants me to make sure that he doesn't lay around and suffer with this illness.
I am loosing my daddy to this terrible sickness. I know that I have done all that I can do for him, so he is in God's Hands..... Thank you for getting back with me. To all of you
 
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mammysandy replied to Tikasiamese's response:
You are still young enough to fight this. Dad is 82 and he is failing every day. He is still grieving over mom. She will be gone 2 yrs. June 30th.
I want you to promise that you will do everything that your doctor says to do. This will prolong your life. There was a patient in the Dialysis Clinic that was 91yrs. old, and it finally got to her, so she told them: enough is enough... I can understand that.
Please, Please, Please take care of yourself. If you have family, surround yourself with them. That is very important. Our family has been wonderful through all of this with dad. My Grandchildren, his Great Grandchildren are his life... Don't mean to get on a soap box, but I know what this can do. I am seeing it now. So, you stay strong, and I will update on dad. Thank you for your kind words. Our family will Pray for you. Hope that won't offend you....
 
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omakoot replied to mammysandy's response:
My husband's family has PKD. His mother was on dialysis for 14 years and it became part of their life. She would dialyze in her home and my kids would sit by her recliner and follow the path of the machine while they chatted with her. A time of their life that they will never forget.

My husband also has PKD and was diagnosed when he was 41 and had his kidney transplant at 42. Each day has been a gift to our family and we cherish each one, he is now 54. One of my daughters also has been diagnosed with PKD and she is now learning to manage her diet and medication to slow down the progress of the disease.

I guess the thing we have learned through all of this is that
God is in control and our motto "If God brought you to it He will bring you through it" has also become a way of life.

Pay attention to your body and what is happening so that you will be able to recognize the signals before it gets out of hand. When my mother-in-law got depressed (which was very rare), or we could see that she wasn't thinking very clear, the doctor checked her blood levels. Usually there was something off balance and once things were brought back to normal she felt OK again.

I guess I'm rambling, but just know that each day you are given with your family is worth the effort. Even when you are in pain, dialysis has worn you out and you have no energy or any of the countless other issues that go with it. You have a contribution to make to your family by sharing yourself and the stories of you growing up are a gift you give each day that your children, grandchildren and friends will have with them for the rest of their lives.

God bless you, I will be praying.
 
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mammysandy replied to omakoot's response:
Thank you for your kind words. I am very close with my dad. I am his caregiver. Each day is cherished with him. It hurts me to see him this way. He has always been a very active man, and now he isn't. He does sleep alot, and that worries me.

I feel so all alone. I have a brother, but he doesn't want to help me out. The load gets so heavy, but I know the Bible says to Honor your Mother and Father, so that is what I am doing. I wouldn't want anyone else to do this. Again, thank you for your kind words.


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