bestoldies
08-04-2009, 08:58 AM
My Mom is 81 years old and has a lot of health problems.
Multiple Myeoloma, Congestive Heart Failure, Renal Failure, had one lung removed to Cancer, and Dementia. The Nephrologist told me four weeks ago that she had 10% Kidney function and that we should think about Dialysis. We told him yes start the Dialysis ASAP. I took her to see him two weeks later, he ran another blood test and he said this would determine Dialysis. I said we already agreed to start Dialysis. He said lets see what this blood tests shows. It took us two weeks to find out blood test results he now said her Kidney function was at 4%. He ordered another blood test and told my Mom she needs to think about Dialysis, he would call me with blood test results in a few days. Why is this doctor waiting about starting Dialysis if her Kidney function is only 4% and better yet why was it not started when it was at 10% function. I am confused because other posts show Dialysis was started when their Kidney function was at 15%.
I know my Mom has a lot of health problems could this be why the doctor is hesitating about the Dialysis?
Multiple Myeoloma, Congestive Heart Failure, Renal Failure, had one lung removed to Cancer, and Dementia. The Nephrologist told me four weeks ago that she had 10% Kidney function and that we should think about Dialysis. We told him yes start the Dialysis ASAP. I took her to see him two weeks later, he ran another blood test and he said this would determine Dialysis. I said we already agreed to start Dialysis. He said lets see what this blood tests shows. It took us two weeks to find out blood test results he now said her Kidney function was at 4%. He ordered another blood test and told my Mom she needs to think about Dialysis, he would call me with blood test results in a few days. Why is this doctor waiting about starting Dialysis if her Kidney function is only 4% and better yet why was it not started when it was at 10% function. I am confused because other posts show Dialysis was started when their Kidney function was at 15%.
I know my Mom has a lot of health problems could this be why the doctor is hesitating about the Dialysis?
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Coravh
08-04-2009, 11:59 AM
I would suggest have a serious chat with the doc. I have encountered some that don't like to bother with elderly patients and that could be why he is hesitating to start. You need to be direct and find out why your instructions to start were not followed. It could be that the dementia is also a significant issue. Is she combative or cooperative, because that can make a difference.
Sorry I can't be more help, but you must confront (in a polite way, of course) the doc.
Sorry I can't be more help, but you must confront (in a polite way, of course) the doc.
bestoldies
08-04-2009, 12:31 PM
Thanks, Cora.
I did confront him about it, and he just said let's wait and see what this blood test shows first. Maybe the doctor is thinking about the DNR my Mother has, that if she did not have Dementia she would probably refuse Dialysis. She is not combative at least not yet, she goes along with whatever we tell her. This is a tough decision for all concerned, my Mom has been seriously sick for almost 40 years. When does one decide that person has been through enough and leave it up to God to decide. No easy answer that's for sure.
I did confront him about it, and he just said let's wait and see what this blood test shows first. Maybe the doctor is thinking about the DNR my Mother has, that if she did not have Dementia she would probably refuse Dialysis. She is not combative at least not yet, she goes along with whatever we tell her. This is a tough decision for all concerned, my Mom has been seriously sick for almost 40 years. When does one decide that person has been through enough and leave it up to God to decide. No easy answer that's for sure.
Coravh
08-04-2009, 03:01 PM
I can't say I've been in your shoes. I wish you the best and I'll say a prayer for your family. Take care.
deedee1313
08-05-2009, 10:31 AM
I understand what you are going through.My husbands health really started to decline in 2001.Over the next 5 years he lost both of his legs,the sight in one of his eyes,had a heart attack,and went into kidney failure.He was in pain all of the time.At 53 he went into septic shock and ended up on life support.At that time I decided that it was enough and I took him off the machine.We lost him and I have never regretted the choice that I made.There have been times that I have said what if,but then I think about how sick he was and I know I made the right choice.I hope it helps to know that you aren't alone in this and in the end you will make the choice that you need to make,whichever one it may be.
feelbad
08-05-2009, 10:46 AM
i would ask him directly if the fact that she just does have a DNR in place and combined with the other medical issues if this IS the reason. it can impact some of the late stage of life decisions to some degree. you just DO deserve an answer as to why this doc did not simply follow standard protocal when she went down to the only 10%, ya know? afterall, he IS the one who brought it up in the first place too. he may have found some other underlying reason/problem with her when he went to do that bloodwork too that could be the reason.
at any rate, a good honest in depth chat about his reasoning here IS most definitely in order. you just DO have the right to know why he is not doing what you were told was going to be done, period. so sorry for what you are having to go thru here. best of luck with things, Marcia
at any rate, a good honest in depth chat about his reasoning here IS most definitely in order. you just DO have the right to know why he is not doing what you were told was going to be done, period. so sorry for what you are having to go thru here. best of luck with things, Marcia
bestoldies
08-05-2009, 01:22 PM
Thanks deedee and Marcia for all your responses.
I do want answers and I will get them once I see the doctor. Yes I have made a decision enough is enough no more suffering. I know I will say what if or maybe I should have done this or that. But I know this is the decision that needs to be made no Dialysis, end the suffering.
I do want answers and I will get them once I see the doctor. Yes I have made a decision enough is enough no more suffering. I know I will say what if or maybe I should have done this or that. But I know this is the decision that needs to be made no Dialysis, end the suffering.
Franksshow
08-05-2009, 02:51 PM
Dear Best,
I am so sorry that you are going through this. I to have a very simalar situation. except my husband does not have dementia. All the other problems tho. And he is in renal failure to the point that his skin has become ashen-grey. His son and I both know the end is coming close. But my husband is stubborn and wont even go see the doctor tiull his appointment next week-We deal with the VA. He has commented that he is dying,and he will not do dyalisis. And when I think he will maybee-the Today show had Kidney transplant people on this morning and one said she would never do Dyalisis again or wish it on anyone. I worked today and my greatest fear was I would find him dead when I got home. What a relief to see him up and sitting in the kitchen.So whatever you decide it is a hard road to travel. Much blessings on you
Karen
I am so sorry that you are going through this. I to have a very simalar situation. except my husband does not have dementia. All the other problems tho. And he is in renal failure to the point that his skin has become ashen-grey. His son and I both know the end is coming close. But my husband is stubborn and wont even go see the doctor tiull his appointment next week-We deal with the VA. He has commented that he is dying,and he will not do dyalisis. And when I think he will maybee-the Today show had Kidney transplant people on this morning and one said she would never do Dyalisis again or wish it on anyone. I worked today and my greatest fear was I would find him dead when I got home. What a relief to see him up and sitting in the kitchen.So whatever you decide it is a hard road to travel. Much blessings on you
Karen
writeleft
08-06-2009, 07:18 AM
I am so sorry you are facing such difficult times, and I hope you get the answers you need very soon.
Your thread makes me realize how much other health issues can skew the effects of dialysis, and it concerns me very much. Although I have my age on my side (48), I will soon depend on dialysis too. I also have many other medical issues going on, and I wonder if my impression of how dialysis will help me, is naive.
I would like to offer my thoughts and prayers for you, as you face these challenges. Best to you...
Your thread makes me realize how much other health issues can skew the effects of dialysis, and it concerns me very much. Although I have my age on my side (48), I will soon depend on dialysis too. I also have many other medical issues going on, and I wonder if my impression of how dialysis will help me, is naive.
I would like to offer my thoughts and prayers for you, as you face these challenges. Best to you...
bestoldies
08-06-2009, 12:02 PM
Thank you Franksshow and Writeleft for your kind words and prayers. There is not a night that goes by that I don't pray for guidiance and strength. I mainly ask God to please end her suffering either make her well or take her. I love her too much to see her suffer anymore.
Franksshow you do know what I am going through, my prayers also go out to you and your husband. Yes I too worry every time the phone rings thinking it is someone calling to tell me she has died, especially when the phone rings late at night. Writeleft good luck with Dialysis I hope it works for you.
The Nephrologist called yesterday and said the Kidney function was still the same he wants to know today what the decision is on Dialysis. We are going to try and ask Mom today if she understands what Dialysis's is and what she really wants to do. I know we have her Living Will and I am the executor over medical decisions but I want one last shot at her helping with this decision to do Dialysis or not. I hope she can give me that answer.
Franksshow you do know what I am going through, my prayers also go out to you and your husband. Yes I too worry every time the phone rings thinking it is someone calling to tell me she has died, especially when the phone rings late at night. Writeleft good luck with Dialysis I hope it works for you.
The Nephrologist called yesterday and said the Kidney function was still the same he wants to know today what the decision is on Dialysis. We are going to try and ask Mom today if she understands what Dialysis's is and what she really wants to do. I know we have her Living Will and I am the executor over medical decisions but I want one last shot at her helping with this decision to do Dialysis or not. I hope she can give me that answer.
writeleft
08-06-2009, 06:25 PM
Of course...that is what we are here for. I will continue keeping you in my prayers, and feel deeply about your dear mother. Love to you both...
polina
08-06-2009, 10:06 PM
Hi
I usually post on the Dementia board. My mom is 80 years old has many comorbities. She has had Diabetes, Congestive heart failure for years along with breast cancer 3x. She has dementia. In march of this year she went into heart failure, liver failure, and kidney failure and had esophageal bleed from the liver failure. She had to be put on a ventilator which after so many days was able to wean her off and breath on her own. They got the congestive heart failure and liver failure under control. However she had to be put on Dialysis. When she got discharged from the hospital and was doing dialysis at the dialysis center the Nephrologist asked her out right is this what you want? She said: When God wants me he willl let me know. So we continued with the dialysis. Dialysis is a tough thing. She had to go 3days a week 4hour time frame. She had to be taken from the rehab facility by ambulance on a stretcher each time. it is very hard and tiring on her. Well, in June we got a call from the Nephrologist saying mom no longer needed Dialysis her Creatine levels were good. So they take her off the dialysis. Shortly after having stopped the dialysis the swelling in her legs all starts up again the first sign of kidney failure is the edema. Then her abdomen is all swelled up. Next comes the congestive heart failure. Back to the hospital she goes and after giving her 2 weeks of lasix to get the fluid off and measuring her urine they decide she needs to be put back on dialysis. So one day I am sitting in her room and I am thinking here we go again. Poor Mom she has been through so much for so long. I decided to ask her out right is this what she wants. I said to her mom you know you have to have dilaysis again she said yes. They told me if I don't have dialysis I will die. I said yes, that is true. I said to her: Mom do you want dialysis? She said to me I want to live. I said ok then we will do dilaysis. Now she is currently on a medical floor of a rehab center on dialysis. Her quality of life is poor but she keeps telling us she wants to live so this is what we do till she tells us differently.
Somedays,just like you I think to myself when is enough enough??? I know one day and it may be sooner then I think, we may have to make the decision for her to no longer prolong her life. Watching her go through this everyday is the hardest thing I have ever had to go through. She is the bravest woman I ever knew.
I wish you all the best with your mom and yes, I do know what you are going through it is a very hard thing to watch.
pauline
I usually post on the Dementia board. My mom is 80 years old has many comorbities. She has had Diabetes, Congestive heart failure for years along with breast cancer 3x. She has dementia. In march of this year she went into heart failure, liver failure, and kidney failure and had esophageal bleed from the liver failure. She had to be put on a ventilator which after so many days was able to wean her off and breath on her own. They got the congestive heart failure and liver failure under control. However she had to be put on Dialysis. When she got discharged from the hospital and was doing dialysis at the dialysis center the Nephrologist asked her out right is this what you want? She said: When God wants me he willl let me know. So we continued with the dialysis. Dialysis is a tough thing. She had to go 3days a week 4hour time frame. She had to be taken from the rehab facility by ambulance on a stretcher each time. it is very hard and tiring on her. Well, in June we got a call from the Nephrologist saying mom no longer needed Dialysis her Creatine levels were good. So they take her off the dialysis. Shortly after having stopped the dialysis the swelling in her legs all starts up again the first sign of kidney failure is the edema. Then her abdomen is all swelled up. Next comes the congestive heart failure. Back to the hospital she goes and after giving her 2 weeks of lasix to get the fluid off and measuring her urine they decide she needs to be put back on dialysis. So one day I am sitting in her room and I am thinking here we go again. Poor Mom she has been through so much for so long. I decided to ask her out right is this what she wants. I said to her mom you know you have to have dilaysis again she said yes. They told me if I don't have dialysis I will die. I said yes, that is true. I said to her: Mom do you want dialysis? She said to me I want to live. I said ok then we will do dilaysis. Now she is currently on a medical floor of a rehab center on dialysis. Her quality of life is poor but she keeps telling us she wants to live so this is what we do till she tells us differently.
Somedays,just like you I think to myself when is enough enough??? I know one day and it may be sooner then I think, we may have to make the decision for her to no longer prolong her life. Watching her go through this everyday is the hardest thing I have ever had to go through. She is the bravest woman I ever knew.
I wish you all the best with your mom and yes, I do know what you are going through it is a very hard thing to watch.
pauline
Franksshow
08-07-2009, 11:58 AM
Reading the post boy you get a cross section of people-My husband has not even been offered Dialysis-VA is so slow in everything and today he is having such a bad day-At least with bestoldies and polina your Moms talk about it-My husband will not discuss how sick he is or what his options might be-Just that he is adament about not doing Dialysis-And my greatest fear is he will pass away before his appointment-I to have leagle Healthcare directives-And have choose to let whatever happen happen here in our home. Yesterday He had such a great day-Felt like my hubby was back-full of energy and talked like his old self-And today he even said he would talk to his daughter on the phone-This is hugh he has been estranged and never picked up when she called and had me lie to her the last few days about he was fine and outside working. The man cant stand for more than a minute without being in pain. So today he said he would talk to her. So was yesterday the begining of the end-Today he is so frail-diareah,runny nose,coughing and so tired. And for the past week he has taken on a grey ashen look. And his BP jumped to 145/95 this morning. He had been running 113/60 for the past week. My delima is I believe in God,I pray but my husband will not even speak about God.
Some background-My hubby is 75-I am 45 we have been married 5 years this december it will be 6 years. I am wife #4,his third wife of 27 years passed away from lung cancer. His children are from his 2nd wife and 2 step from his third. He was not a very nice father as the kids will say-And he was an alcoholic when I met him. After his kidney cancer and the removal of one kidney 2 years ago and the death of his brother-He stopped drinking-He says he has no desire.He will have a drinkl on occasion but prior to we would go through a case of booze a month. So I tell people I am on my 2nd marriage because he is two diffrent people-I like the new man he became.
Thank you for letting me vent-
Karen
Some background-My hubby is 75-I am 45 we have been married 5 years this december it will be 6 years. I am wife #4,his third wife of 27 years passed away from lung cancer. His children are from his 2nd wife and 2 step from his third. He was not a very nice father as the kids will say-And he was an alcoholic when I met him. After his kidney cancer and the removal of one kidney 2 years ago and the death of his brother-He stopped drinking-He says he has no desire.He will have a drinkl on occasion but prior to we would go through a case of booze a month. So I tell people I am on my 2nd marriage because he is two diffrent people-I like the new man he became.
Thank you for letting me vent-
Karen
bestoldies
08-11-2009, 12:07 PM
All of this really causes one to evaluate everything and how we live our life. It is so sad so many are so seriously sick and how they get the strength to keep going each and every day. My Mom has decided she wants to do the Dialysis, she said this when she was having a good day her mind was like it use to be. She said she needs to do it because if she didn't it would be like suicide, and when God is ready he will take her. That was a little hard for me when she put it like that my only child died by suicide which was her grandson. But I stand behind her with her decision no matter what it is.
Thanks to everyone for your support and continued stories. We all need to be thankful for the good days that we do have and any good health that we might have.
Thanks to everyone for your support and continued stories. We all need to be thankful for the good days that we do have and any good health that we might have.