I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: F.A.Q. (Frequently Asked Questions) => Topic started by: Stacy Without An E on August 11, 2009, 09:27:55 PM
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I can't find an honest answer to this questions anywhere on the internet. I realize there are variables depending on your health status generally. But what if your only health issue is kidney failure? On average, how long would it take to die?
Just curious.
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Remember Art Buchwald?
He lived a year without dialysis before he died. But that's a most unusual case.
http://www.washingtonpost.com/wp-dyn/content/article/2007/01/19/AR2007011900444.html
It may take between two and five weeks.
Depends if you are eating a lot or a little.
8)
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For Juan it took a little over 4 weeks - his story http://ihatedialysis.com/forum/index.php?topic=14679.0
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By no means am I a doctor or have anything to do with the medical field so I may be off on this.There are many factors in this with your general health being a big factor......are there other complications,types of meds taken and while stopping dialysis is the person still taking them,attitude is there a desire to die right away.....the I feel lousy and wish to stop living or just live a short period of time as "carefree"and "happy".All I know is when my dad stopped dialysis they gave him 7 days to live.......he lasted 10 but was in a great deal of pain the last three days and was basically doped up on morphine for them.But to know my dad I think he lasted those extra 3 days just to say "kiss my a** you idiot doctors,you have no idea what you are talking about!",he hated doctors with a passion.My doctors told me 5 days to 30 days,that it was not an exact thing because of all the different factors in each person.The poisons build up at different rates,as does fluid around the heart,how quickly are other organs affected and which ones.But in most cases they do not give you long.
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This is from: http://www.kidneyeol.org/O-Q&A%20About%20EOL%20Care%20for%20Renal%20Patients.pdf
Answers to Frequently Asked Questions
About End-of-Life Care for Renal Patients
1. How do major religions feel about people choosing to stop dialysis?
Many organized religions, such as the Roman Catholic religion, the Eastern Orthodox religion, and most Protestant denominations believe it is acceptable for people to stop dialysis if the suffering involved with dialysis outweighs the benefits. Some religions, such as Orthodox Judaism and Islam, believe it would be acceptable to stop dialysis only if the patient is imminently dying. If patients have concerns about their religion’s views on stopping dialysis, it is suggested that the patient consult with their clergy before making a decision to stop dialysis.
2. How do we know that stopping dialysis is not suicide?
Suicide occurs when a patient takes an action to cause his or her death. Examples of suicide are taking an overdose of medication or killing oneself with a gun. Patients who commit suicide do not die naturally. When a patient stops dialysis, the cause of death is kidney failure. The death is natural. Before a patient makes a decision to stop dialysis, he or she should be evaluated for depression and other treatable disorders. Discussions also should be held between the patient, the patient’s family and loved ones, and members of the treating renal care team. Others, such as the patient’s clergy, the primary care physician, etc., may also be involved in these discussions.
3. Does choosing to stop dialysis mean that staff and family have let the patient down?
The short answer to this question is “No.” Patients usually choose to stop dialysis because they are no longer satisfied with their quality of life. When a patient asks about stopping dialysis, it is important for the renal care team to evaluate the patient to be sure that there are no treatable, reversible causes of the patient’s dissatisfaction with dialysis. If after a full evaluation and therapeutic interventions as appropriate, the patient makes an informed decision to stop dialysis, the patient’s wishes should be respected. Even after stopping dialysis, medical care should continue and patients’ symptoms should be treated. No one has “let the patient down” if a decision has been made to stop dialysis.
4. Does it mean that the family and staff want to get rid of the patient when a patient chooses to stop dialysis?
The short answer again is “No.” Dialysis staff are like most health care providers: they want to treat people to help them to live productive, happy lives free of pain and suffering. Usually when a patient asks to stop dialysis, extensive discussions are held between the patient, his or her loved ones, and members of the dialysis staff to understand why the patient is choosing to stop dialysis. As part of these discussions, the dialysis staff will strive to identify and treat any of the possible symptoms that are contributing to the patient’s poor quality of life before simply stopping dialysis. Unfortunately, for some patients, the burdens of their illnesses and the need for dialysis at some point becomes overwhelming and causes more suffering than benefits. If this is the case and no treatments are likely to improve the patient’s quality of life, the decision to stop dialysis may be made. In these cases, the dialysis staff is often saddened by the decision to stop dialysis but they remain supportive of the patient’s decisions. Usually members of the dialysis staff will continue to visit with and care for patients who have stopped dialysis.
5. Do life insurance companies pay survivors if people choose to stop dialysis?
Yes. Stopping dialysis is a natural death so life insurance policies are paid.
6. How long does it take to die if a patient stops dialysis?
Most patients who stop dialysis die within 8 to 12 days. An occasional patient who has near normal urine output may live several weeks to a month. Patients who have other illnesses may die only a few days after stopping dialysis.
7. Is it painful to die after stopping dialysis?
Not usually. Patients who stop dialysis usually become very sleepy after a few days and then die in their sleep. Dying from stopping dialysis is considered to be one of the less painful ways to die. If a patient has pain, it can be treated with medications.
8. How come some patients don’t die within the predicted time period?
Some patients who are very sick with infections, heart disease, or lung disease do not even live a week after stopping dialysis. Other patients who have some kidney function left may live several weeks to a month.
9. Are there medications a patient can take to help in this period of time of no dialysis?
Yes. Patients can take a medicines to relieve shortness of breath and pain. Patients can also take medicines to relieve muscle jerks that may occur. Patients who are short of breath can also use oxygen. Anti-nausea medications can be helpful too.
10. Can patients finally eat whatever they like when they stop dialysis?
Yes, patients may eat what they want. Some patients will continue to limit their fluid intake to avoid fluid building up in the lungs. These issues will be discussed with the patient who chooses to stop dialysis. Occasionally, some patients do not want to limit their fluid intake and make an agreement with the dialysis unit to have fluid removal without dialysis after they stop their dialysis treatments. This process is called ultrafiltration. Although some patients who stop dialysis want to have ultrafiltration if fluid buids up in the lungs before they die, ultrafiltration is rarely needed in dialysis patients who stop dialysis.
11. Will the patient who stops dialysis swell up like a balloon?
No, not if the patient is careful about liquid intake or receives ultrafiltration. Most patients who are dying are not thirsty and so drinking a lot of fluid after stopping dialysis rarely happens.
12. Do you have to go to a hospice to get treated?
Most hospices actually provide care in your home. Less than 5% of hospices are in hospitals.. The Medicare hospice benefit does allow for patients who are treated at home to go to the hospital to manage pain or other symptoms that cannot be managed well at home. The Medicare hospice benefit also provides respite care so that caregivers can get rest. This benefit allows patients to get care in a residential facility, nursing home, or a hospital for up to 5 days.
13. Can hospice help families with patients who stop dialysis?
Yes, hospice physicians, nurses, therapists, and social workers are familiar with helping patients and families who have only a short time to live.
14. Are there any special circumstances that hospice needs to be aware of when they receive a referral for a renal patient?
Yes, hospices will need to know the patient’s expected survival after stopping dialysis.
15. What if my doctor does not want to refer me to hospice?
It is important to find out why. Some doctors are not familiar with hospice and might prefer not to become involved. It is important to have a frank discussion with the doctor regarding quality of life and life expectancy. If the doctor does not want to have this discussion or is uncomfortable with hospice, it might be helpful to talk with a doctor who works with hospice patients. If needed, care can be transferred to another doctor who is comfortable with hospice.
16. If the patient feels a whole lot better once he stops dialysis, does this mean that he is getting better and that he should go back on dialysis?
No. Patients who stop dialysis often report feeling better for the first 3 to 4 days after stopping dialysis. Patients often say that just having made the decision takes a burden off their minds, and they feel more relaxed. Also because patients are not going to dialysis treatments 3 times a week, they are less tired from the travel back and forth and do not have the “washed out” feeling that many patients get after dialysis.
17. Because Medicare stops paying the renal team once a patient goes with hospice and stops dialysis does this mean that the team can no longer be contacted?
Most renal care teams want to be involved in the patient’s care after the patient stops dialysis. They are happy to answer questions the patient or family may have and to prescribe medications as needed to be sure that the patient is comfortable.
18. Is it always true that a patient must stop dialysis in order to get hospice?
No. Patients who are dying from some other condition such as cancer or heart disease may continue dialysis while receiving hospice care.
19. Do younger patients have the right to stop dialysis?
Yes. Regardless of age, the reason why dialysis is stopped is because the burdens associated with it are too great. Occasionally even infants and children have dialysis stopped because continued life with dialysis is causing extreme suffering without a likelihood of benefit.
20. If an older person has dementia, is it homicide for the family to stop dialysis?
No. Patients with dementia often do not understand the dialysis process. Sometimes it is even necessary to restrain them (literally tie them down) to keep them from pulling out their dialysis needles during the treatment. Undergoing dialysis can cause severe agitation for patients with dementia. Patients with advanced dementia who do not understand the dialysis treatment and cannot cooperate with it are patients for whom stopping dialysis should be considered. Death from stopping dialysis is due to kidney failure, not homicide. What families (and staff) perceive regarding how a patient is tolerating dialysis, especially in the demented state, is an important consideration when weighing the patient’s quality of life.
21. What does the renal care team recommend for the patient who is thinking about stopping dialysis?
Various organizations such as the National Kidney Foundation, the Renal Physicians Association, and the American Society of Nephrology have published guidelines on how to evaluate the patient who is thinking about stopping dialysis. Patients should be evaluated according to these guidelines before a decision is made. Patients and families can request such an evaluation by the renal care team prior to any decisions being made.
22. Can a patient not tell his family that he is stopping dialysis?
Patients are legally allowed not to tell their family that they are stopping dialysis. However, not telling the family is usually a very, very, very bad idea. Families are unprepared for the patient’s decision, and the unpreparedness causes them severe emotional suffering. Major decisions such as stopping dialysis are best made with the patient’s family. Telling the family and discussing it with patient and family (even if it takes a little longer) is likely to facilitate reconciliation and peace with the decision and is usually well worth the time and effort.
23. Can a patient who is stopping dialysis donate any body parts?
Patients who are stopping dialysis are not able to donate internal organs such as hearts, lungs, or livers, but they may be able to donate tissues. It is best for a dialysis patient who is stopping dialysis to express their wishes in advance so arrangements could be made at the time of death for an evaluation of the patient for tissue donation.
24. Will the police come to a patient’s home if he stops dialysis and dies? Should they be notified ahead of time?
No, it is not necessary to call the police. It is best for the patient to be taken care of by hospice after the patient stops dialysis. When the patient dies, the hospice should be called, and a hospice nurse will come to the home and assist the family in making necessary arrangements.
25. Can a person stop dialysis and die in the hospital?
In past years, most patients who stopped dialysis died in the hospital. In recent years, there have been changes in insurance coverage. Insurance companies may deny hospitalization coverage for a patient who has stopped dialysis. Hospices can help dialysis patients who have stopped dialysis to die comfortably at home.
26. Will all insurances pay for hospice?
Many, if not most, will pay for in-patient hospice. Patients and families should discuss this matter with the dialysis social worker prior to making the decision to stop dialysis to be sure what type of coverage the patient has with regard hospice.
27. Would it be okay for little children to visit a patient who has stopped dialysis?
In most cases, it is encouraged to have little children visit beloved family members who have stopped dialysis. The dialysis patient then has an opportunity to say goodbye to the child. The child is also given the opportunity have a final memory of the patient.
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I was having a wee visit last year in the renal unit and there was a woman who was very ill and on D, but other things had gone wrong. Plus she was older. Her family decided to let her go, and it only took about 4 days. She was pretty much comatose until the end.
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My plan is to drink about 5 banana milk shakes. I figure 2 days! I would think if you don't pee at all (like me) you can't last too long.
But I am tired of the little things like the staff being idiots and now there is an unexplained lump on my nondialysis arm and I'm still dealing with diarrhea and my heart flutters all the time now.
Lord either heal me or take me home because I'm tired of Purgatory!
:bow;
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I am told by my doctors that, in my case as an otherwise healthy and older person, it would be about six weeks. Again, I assume like everything else, there are no real experts in the matter but surely in IHD you'd find lots of people who delude themselves into thinking they are.
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A good topic, never taught of this question... :rant;
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I have researched this before and the information I came across altogether was it can generally vary, even if your only condition is kidney failure. I even read that dying from kidney failure and no treatment is called "Silent Death" or something of that nature. Supposedly without treatment, one typically dies in their sleep. Sleeping becomes more deep as the days go by and eventually it becomes so deep that one does not wake up. It's almost like falling into unconsciousness. I figure that is great if I ever decide I do not want to deal with dialysis any longer.
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I assume like everything else, there are no real experts in the matter but surely in IHD you'd find lots of people who delude themselves into thinking they are.
Oh DW - such a rosy outlook this morning! :flower;
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I have a book that says it would take roughly 2 weeks. It also says that it wouldn't be painful......I don't know about that.
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my nep doc told me it could take 2-4 weeks and I would get very sick and I would be in pain
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told same as maritza
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A relative in her 80s went off of dialysis and died in less than a week.
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Good posting with great answers Okarol :thumbup;
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I am told by my doctors that, in my case as an otherwise healthy and older person, it would be about six weeks. Again, I assume like everything else, there are no real experts in the matter but surely in IHD you'd find lots of people who delude themselves into thinking they are.
Yes, it's sad really, cos everyone doesn't realise that they only have to ask me!! I AM an expert in everything I chose to spout about. Lucky eh?
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To celebrate the three in a row worse days on dialysis I goofed around a little this morning to avoid in inevitable for a little while. I just thought it might be appropriate to ask something people who are seriously considering it rather than read in the newpaper, etc. No slight meant. But I had just asked my nephrologist and my internist the same question yesterday so it was fresh on my mind.
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I am telling you Dan-- you aren't going anywhere until we meet! I should have typed that all in capital because I am yelling! I am sorry the past week has been rough. I hate it for you :cuddle;
This is a very interesting thread and something we all have or will think about.
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To celebrate the three in a row worse days on dialysis I goofed around a little this morning to avoid in inevitable for a little while. I just thought it might be appropriate to ask something people who are seriously considering it rather than read in the newpaper, etc. No slight meant. But I had just asked my nephrologist and my internist the same question yesterday so it was fresh on my mind.
How long it will take? don't know but this is how it will happen.
This is the stuff that is happening in your body when your kidneys fails. If you decide to do nothing this is what will happen inside your body...., since your kidneys cannot filter out the potassium you consumes fast enough, it will cause your heart to beat irregularly. If you have lost the ability to produce urine, your vascular system will become flooded with fluid and your heart won't be able to keep up with the increased volume. That increased volume will also collect in your lungs making it difficult to breath, depriving your heart and brain of oxygen. Your kidneys cannot filter out the urea your body produces, which will result in toxemia, rapidly damaging your heart, brain, and other vital organs. If you live long enough, the phosphorus that your kidneys can't filter out, will absorb into your aorta, and causing it to calcify and harden, making it harder for the heart to supply itself with oxygen.
Dialysis prevents all the above life threatening effects by removing the harmfull toxins in your body. If you do not qualify for a transplant or choose not to have one DIALYSIS is the only option you have if you want to stay alive.
Someone here said that it won't be painfull........ I think it will..... Not being able to breath.......
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No one knows, of course, how painful. Two of my best and most supportive doctors gave me this information just a couple days ago. I guess you have to take your chances.
No transplant here for sure. And I keep reading the articles stating that "dialysis is no way of life" and I start to believe them. Really, I've tried the Positive approach and it worked for a while, but sometimes reality sets in.
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Dan
Why don't you look at it more practically...
Make a list of the pro's and con's and look at each and decide then.
It is your choice my pal and only you know what it is like..... no one else knows how you feel.
Hugs
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If anything this thread has demonstrated it is that this is one of those questions that medical science, or human experience, can only quantify so much. Everyone is so different - one lives 4 days, another 4 weeks... you can't really put a figure on it like that because it seems it would be a rough gestimate at best. And if you had those 5 banana shakes like Rerun wants it would be even less!!!
I have to say this is not something I've ever considered - even though I saw my own mother just 3 and a half years ago decide to stop her own treatment and go on her own terms - so I am no stranger to the notion and I even support very much our own self determination and right to make such a decision for ourselves - it's our lives and if it's no longer giving us what we want from it, and it's a daily struggle... we should be able to end it if we choose.
Dan, I am sorry you've had 3 bad dialysis sessions... have you posted about this in a thread somewhere? it concerns me. Sometimes we all have bad sessions, or even a couple of bad ones ina row - I had some about 2 weeks ago and it sure sucked! I wonder if you have had problems due to cramp or crashing or something? maybe your dry weight is out or something.. perhaps it can be a simple remedy to improve the experience for you.
Dan have you considered talking about your feelings with the social worker?
You have to meet Paris.. just like I have to meet her daughter, AlohaBeth!!! :) yes yes a double "date" hehehe :rofl;
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My social worker is rattled brained (nice but nuts). I talked to a therapist who is very good in general but had no knowlege of what dialysis is. I talked to my two most important doctors. I'm doing nothing on the spur of the moment.
Of course they cannot give you an exact time frame. It is based on your current condition and records. Neither can they tell you if the dialysis treatment will kill you tomorrow and if and how much that would hurt. Someone yesterday said, "don't say life is a gamble", but it is.
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No one knows, of course, how painful. Two of my best and most supportive doctors gave me this information just a couple days ago. I guess you have to take your chances.
No transplant here for sure. And I keep reading the articles stating that "dialysis is no way of life" and I start to believe them. Really, I've tried the Positive approach and it worked for a while, but sometimes reality sets in.
For some people, "dialysis is no way of life" is I guess is true. So far I don't agree with them. For ME, the dialysis clinic is my social network. I'll have to admit (I go for 5 hr.) after about 4 hr., I'm ready to get the hell outa' there, but, in general, I don't mind it that much. I'd rather be able to go anywhere I want and do anything I want. They say that they can get you dialysis anywhere, but when I go on vacation, I go away from population centers. Try to get dialysis at the Grand Canyon. But I've been there more times than I needed to go. After the first time. . .
I aint gettin' no kidney. Too much trouble for something temporary.
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Good to see you back, hurlock1.
8)
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Like RichardMEL, I am concerned about some of the people posting. I think there is a difference between wanting to stop dialysis because you do not feel well at all and have exhausted your options, and stopping because things in your personal life are not going well, or you are going through a rough patch with treatment. Of course I believe it is anyone's right to refuse any treatment. I do see it as suicidal behavior, but I am not looking at it from a legal or religious perspective, just from the technical definition of what constitutes suicidal ideation. I do not think of refusing dialysis as any sort of immoral act.
I am going to suggest an option to people who might feel they would benefit from discussing this with someone who will not shy away from getting into the real details of this issue. Please don't jump on me! If you hate the idea, then discard it. http://www.suicidepreventionlifeline.org/
I used to volunteer at one of these centers, so I can tell you that at least for SoCal, these people are well-trained and are genuinely concerned about the callers. It does come down to the luck of the draw as to whether you get a person you can relate to or not. I spoke to a few dialysis patients in my time there, and a few who were considering refusing other treatments that would be guaranteed to lead to death. And don't worry, I won't be answering the phone - I don't volunteer at one of their call centers anymore (there is not one near my current city).
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They say that they can get you dialysis anywhere, but when I go on vacation, I go away from population centers. Try to get dialysis at the Grand Canyon.
Been there, done that... in an emergency, unscheduled, snowed in at the Canyon unable to get back to Las Vegas in time.
So, go anywhere and do anything (then make it to your next appointment) and then go anywhere, do anything some more!
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Knowing how I felt before I started dialysis, I would choose a different way to go myself. However, having said that, I think they do load you up with morphine etc, so hopefully you'd be out of it anyway. I so am not going to leave this mortal coil as a blown up bubble of fluid!!
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The other day I asked my doctor How Long Does It Take to Die Once You Quit Dialysis? And he said, "I don't know Zach. Why don't you try it yourself and then get back to me."
:urcrazy;
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oh, so this is the rest of the quote... mmm. I didn't need that my friend.
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DWCrawford, just come sit in the corner with the no transplant people and have a drink! Things will get better, I hope soon. I have had dialysis sessions that sucked and years where I did not feel right or good. \_/ Drink UP!
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I know Kit. You and Zach are right. I really try to be positive about this. Really I do, but I slip now and then. Dialysis really isn't that bad. I'm just looking for perfectioin. And then I think, "what a great long life I have had so I need to be thankful for which ever way it goes".
I really do like myself when I get this negative. It is over (for now anyway).
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I really feel compelled to answer your thread question
Having just recently watched my father pass away
He had no kidneys for one year
It took 5 days for Dad once he stopped dialysis
It was bloody awful
There were times when he definitely wasn't sleeping - uncomfortable, rls, hot/cold flushes etc
Once medication was given a lot of the symptoms were not noticeable
However
He did not just die whilst sleeping
He kept gasping for breathe
It was bloody awful
But he is now at peace
Thank God
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Sorry you had to experience that with your dad, Jessup. :cuddle;
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To celebrate the three in a row worse days on dialysis I goofed around a little this morning to avoid in inevitable for a little while. I just thought it might be appropriate to ask something people who are seriously considering it rather than read in the newpaper, etc. No slight meant. But I had just asked my nephrologist and my internist the same question yesterday so it was fresh on my mind.
How long it will take? don't know but this is how it will happen.
This is the stuff that is happening in your body when your kidneys fails. If you decide to do nothing this is what will happen inside your body...., since your kidneys cannot filter out the potassium you consumes fast enough, it will cause your heart to beat irregularly. If you have lost the ability to produce urine, your vascular system will become flooded with fluid and your heart won't be able to keep up with the increased volume. That increased volume will also collect in your lungs making it difficult to breath, depriving your heart and brain of oxygen. Your kidneys cannot filter out the urea your body produces, which will result in toxemia, rapidly damaging your heart, brain, and other vital organs. If you live long enough, the phosphorus that your kidneys can't filter out, will absorb into your aorta, and causing it to calcify and harden, making it harder for the heart to supply itself with oxygen.
Dialysis prevents all the above life threatening effects by removing the harmfull toxins in your body. If you do not qualify for a transplant or choose not to have one DIALYSIS is the only option you have if you want to stay alive.
Someone here said that it won't be painfull........ I think it will..... Not being able to breath.......
Jessup.....
I found the above research ... I was hoping it was not completely true about being short of breath..... but it seems it is the way it will happen..... Oh MY!?
I am sorry that your dad suffered......like this.
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jessup and cyclops, I am so sorry that you both had to watch your fathers suffer. Thank you for posting this valuable information.
I feel that some of these articles inadvertently romanticize this choice, and that bothers me. Saying it's "not usually" painful when two different members have indicated that their experiences were the opposite is distressing to say the least. I know if I were told it was probably not going to be painful, and that I would likely die in my sleep, and I instead lingered in agony for days, I would die thinking "those bastard doctors lied to me for the last time". (By the way, I really like most of my doctors now, but this was an entirely different story when I was a kid, and I still distrust the profession.)
I became fed up with everything about five years ago and told my GP a few times that I did not want another transplant and I would never accept dialysis again. He said "Let me tell you what no one else is going to tell you. Here is how this will play out." If I had known he was going to react that way, I would have brought a tape recorder. It was extremely detailed and gruesome. I have never said a word about refusing dialysis since.... :-\
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Of course no one can tell you the pain of dying from anything and I doubt there is really an easy way. I was simply relating what was told to my by my nephrologist which may or may not have been based upon some specific situation. Unfortunately we, myself included, tend to want to lump all situations into a neat little package we can wrap up and put on the side until we need it.
I too am sorry for the loved ones people had to watch suffering. Reminds me so of my own father dying from emphysema and my dear friend dying from cancer. If only we could pick when and how, hell, and why not even pick "not to".
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:bump;
Someone asked me about this - here's the thread I was talking about.
Sometimes the search feature comes back with a lot of results so try searching a couple different ways.
okarol/admin
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I imagine that once you quit dialysis intending to die with dignity, you should also quit your renal diet. A renal diet is so restrictive in phosphorus and sodium that you could certainly eke out a few more months on it.
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Yes, we talk about how bad potassium is, but this would be the time to take advantage of it - sudden death from electrolyte imbalance.
It sounds like fluid overloading makes this death horrible, unable to breathe drowning in your own body fluids.
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For my dad it was 8 days from the time dialysis was stopped. He was in a hospice and they were wonderful. I highly recommend hospice.
He could eat anything that he wanted (kept pushing ice cream). He was peaceful and at rest during all of it. His last 2 days he was given morphine but at that point he was in more of a coma but still hearing what was going on (that is what they told me). He was not in any pain or uncomfortable. It was one of the saddest things I have experienced in my life, but I understand the hard decision this was for my mom to make (my dad was ill since September).
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my dr told me about 2 to 4 weeks as well, and i tried skipping D for 2 weeks. I dont agree that its the best way to die or that its not painful. I was miserable. I couldnt breathe at all, i was throwing up, had terrible diareaha. I couldnt sleep. It was terrible. I went to the hospital and had emergency dialysis and resumed doing dialysis. That being said, I do pee sometimes, about 1 -2 times a day, so thats probably why it didnt kill me. I didnt take my meds, or follow my diet at all duing that time either. (if id known about the star fruit, i probably would have tried that...sadly enough to admit...)
I dont think stopping dialysis is a good idea, but i could see why people wouldnt want to do it anymore. Lucky, I found my reason to live. Hes 4ft tall 38lbs and the cutest blue eyes ever made. my six yo boy. :) Hes the only reason i do this. I wouldnt be doing it, if he didnt exist.
My mother was told she only had months to live, when i was BORN. I was 12 when she died. Doctors dont know. When it is ur time it is ur time. Perhaps one person could live years without dialysis, even with the need. Others only days.
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be positive Gothiclovemoney! Dialysis sucks, but it is far better than the alternative.
When my mom was on Dialysis she was so sick everyday afterwards. It was horrible. I took care of her, and i told everyone that if it ever came time for me to have to do Dialysis, that I would never go though it! That was 12 years ago, and mom has sinced passed away (11 years ago). And here I am, stuck to a freaking machine 3 times a week!
Remember . . . if it doesn't kill you, it is suppose to make you stronger!
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never say never huh hazmat ;)
im much more positive now, but i have my moments, we all do.
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For Frank it took 8 days from last dialysis session to his passing. He did have other problems. 5 days with no nutrition as we stopped the TPN so he wouldn't get fluid overload & breathing problem. Hospice was great about helping with medicine for his pain & secreations control. He slipped into a uerimic coma on day 5. I know he was comfortable & pain free and peaceful.
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Thank you all for these very helpful and informative posts. I've learned so much. Thank you.
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My mom had a transplant in 84. It completely failed in 99; she refused dialysis and lived about 3 days. She was 73 with multiple health problems from the years of Imuran and prednisone.
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I don't really think there is 'any' specific time frame, I think everyone would vary from person to person at least from what I've read and my understanding.
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I have asked that question so many times and NO ONE can answer that.. My husband has been off treatment for over 42 days now..He is feeling better then he has in a year. NO PAIN... He sleeps off and on , he gets puffy up one day then the next back to normal. His blood count has been good . There has been days were I didn't think he would not make the night because of the glossy look in his eyes, his breathing pattern.. then the morning would come and he would seem better... He doesn't eat or drink much. But I think that is more out of habit. We know it will change but for now we are grateful for every day. I send you my best....Remember everyone is different..
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Wow, this post brought back a lot of memories for me. Let me start with a great resource:
The Kidney End of Life Coalition: http://www.kidneyeol.org/hospice.htm
Now for my experience.
My mother had always been sick. Not much energy, some days she was puffy, other days she wasn't. She threw up so often that she kept a pan by her bed. It was my job to sit next to her and rub her back while she threw up.
By the age of 9, I could take a BP like a pro. The kids at school were all confused when they wanted to play doctor in the woods and I reached for their arms. In my world, Doctors reached for the arm first. My oldest sister gave me a microscope for my 13th Birthday. The first slide I prepared was of a piece of skin peeled from the ulcer on my mother's right leg. It was cool to look at under the microscope. My mother had been as a nurse, so she encouraged me to be medically inquisitive.
One night, as she was in the bath, she could not move her legs. We were alone in the house. I ran and called a neighbor, and they in turn called the ambulance. I draped her with a towel as our neighbors carried her to her bed. The minute that she lay down, the blood clot moved and suddenly she was no longer breathing. CPR saved her life that night. She was brought to the hospital. She joked that the nasal cannula was pointless, and she was better oxygenated when they opened the windows to the ambulance.
I came to view hospitals as my second home. I knew the staff by first name. When it was my turn to wheel my mother in her wheelchair, my driving abilities scared her, and she thought that she would be propelled through the plate glass window. It was early in 1979, and she was discharged to home with words like, "tragic", "so sad" and "here's a 'scrip for morphine".
My mother's bedside table was like a pharmacy. She had a pill for everything. But when she was really in pain, out came the little leather kit with the glass tubes and needles. That was how I learned to draw up meds. I was good at it. I knew that Nitroglycerin was to be kept in the fridge (although I did try to blow up a rock with one of her pills once - it didn't work)
I had an amazing 13th Birthday Slumber Party. It was Memorial Day Weekend, and all my friends came to spend the night. By then, my mother was in bed most of the time. I learned to check for pitted edema, and I had fun poking her ankle and seeing the indent that stays when you legs are so swollen. Her wounds wept with a clear liquid with a yellowish tint. I thought that was gross and I asked her if they were infected - she said no, it was just that her kidneys we no longer taking any fluid from her body.
My sister Julie graduated from High school the second week in June. I heard people saying things like "Alice is just staying alive to see Julie graduate from High School." Three days later, I stole my sister's bathing suit and went to the lake to go swimming. Before I left, my mother was laying on her bed, and she asked me to run and get her a fan from upstairs. I stepped out of the room, then popped my head in to lie and say "I couldn't find it. Bye!" and with that, I ran out of the house to go swimming.
We heard an ambulance in the distance as we got to the lake. I went swimming anyway. Pretty soon, Helen Martin came to pick me up, and said "Anna has to go home" when we were a couple of miles from the house, I said "My mother's dead, isn't she." Helen didn't know what to say.
I got home to cars in the driveway. I ran to her room, and saw that the bed had been stripped to the mattress. I was furious. From what I remember, she was pleased that her final ambulance ride was on a newly paved road, and she commented to the EMT's "It is about time." Her final words at EMMC were "Hi Doc." (her beloved nephrologist was there to meet her as she was taken out of the ambulance). Then she died.
Aside from being angry that people had stripped her room bare, I saw a note that she made on her bedside table, in pen, noting the time of her last medication. 1pm on June 16th.
So, to me, that is how long it takes to die with no dialysis. It isn't measured in days or weeks, it is measured in memories. For me, you live, until you die. Everything in between is simply living.
And if you were to read her medical chart? ESRD in May 1978 with severe complications due to ADPKD. Not eligible for transplant and not a candidate for dialysis due to multiple co morbidities. Cause of death: ESRD secondary to PKD.
A.A.R.B. July 3, 1933 - June 16th 1979
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:'( Meinuk :cuddle;
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WOW... Meinuk... that was beautiful..... really I am very touch..... and its hard for me to say that....Death is very scary..... I too watch my mother die in 2005...but not from CKD but from cancer.....
Now that I have CKD... I often wonder what it will be like to die.. Your post reminds me of life.... and I thank you for that...
You sound like a wonderful women and your mother would be proud of you ......Thx again kathy
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A sad, yet beautiful, story, Meinuk!
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:cuddle; and thank you Anna. My Mum died from advanced melanoma at home after being in bed for 3 months. She was 46. We took turns nursing her.
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If there was anyway I could help my son (13 yrs. old) and my husband understand, I would stop dialysis today and just be done! I'm just so sad. Not even a shadow of the whole person I was before my health (hearing and kidneys) fell apart. Life right now just seems so pointless. Groundhog Day - same things over and over. Get up, get son to school, take meds, hang out on the couch all day, take a shower and do dishes and some laundry, pick up son from school, husband comes home from work, make dinner, sit on couch and watch stupid TV, walk the dog, set up my machine, go to bed. Next day do it all over again. For three and a half years now.... I don't want my husband and my son to have to deal with my death, but I'd love to be gone.....
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:grouphug; everyone. (And thanks for ignoring the typos)
This is what I have done for advanced planning in dealing with my family and loved ones. Keep in mind that these are all extended family members. My disease is genetic, and I chose NOT to have children, but the kids that I am writing about consider me their "Other Mother" and I have amazing friends who are willing and generous enough to share the love of their family. I like to say that they are adopted. It is NOT the same as having a child of your own, but it is still pretty intense, and honestly, all I have.
We talk about me dying. I joke about haunting certain teenagers. I am very frank about me currently living on borrowed time. But I am also living as if my life were a daily "Make a Wish" experience. Hence going to Disney for the first time ever in March!
When I started dialysis, I made my arrangements. I appointed my best friend my "Death Coordinator" and she and I split a bottle of wine and discussed my will, my thoughts on what to do when I die, and what is where. I talk to the kids about K being my "Death Coordinator". (everyone says that she needs a job! - It'll be interesting on a resume!)
The kids were all involved in what would happen with my body. And because of some input, I had to make changes. (Instead of scattering all of me in various spots around the world, Robert gets to keep some.)
Funerals are for the living. I don't want one, and I really don't care what they do. As long as they know that I am thinking about them and their future, and they have the knowledge that I care now, and that won't go away after I die. My advanced directives are in place, and updated yearly. I've just made it a routine.
No one is ever prepared for someone that they love dying. It hurts and there is an emptiness. BUT, when I was 13, my overwhealming reaction to my mother dying was relief. Her suffering was over. I was sad for my sister who cried all night. I was scared for myself because I thought that her sadness would bring our mother back in ghost form, and she was so sick, I just wanted her to be at peace. Children have strange thoughts, and you just can't predict them.
It is a matter of nature that we outlive our parents. It isn't easy, but it is something that just is.
Wish, my advice would be to get the best possible health care for yourself, see if you have depression on top of CKD. Don't give up until you have exhausted all possibilities. Vent when you need to , but also understand that stopping dialysis is a process. Not something that you should wake up one day and decide to do. If it is a sudden, unexplored feeling, my first thought would be depression. There are pills for that. Death should never be an RX for depression, and sometimes, we get so depressed, we don't see the difference. That is when it is time to seek outside help.
Talk to your family when you/they are up to it. Put things in writing as needed. And just love them. They will remember the love. Really, I speak from experience. My mother was both the best and worst influence on my life. In her own way, she taught me to cope with "our" disease in the best possible way. And well, in hindsite, my childhood was not optimal, BUT, we all play the hand that we have been dealt, and now, at 44, I wouldn't have done it any other way. My childhood experiences made me who I am today, warts and all. I'm ok with that.
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A week, maybe 2 if you really watch your fluid intake and watch your potassium levels. Those are what will kill you. Oviously the people who made it longer must have had some sort of renal function. But for those of us with NO kidneys whatsoever, 1-2 weeks tops.
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Meinuk, I can relate to the feeling of relief you had when your mother died. My Dad who had PKD died from septicemia when I was 23 and everyone kept telling me how brave I was. Dad used to say he was 'sick and tired of being sick and tired' and our Mum was his carer and that was taking such a toll on her. So I too felt relief when my Dad died. I am reasonably healthy except for ESRD but I too have made plans, to make things easier for my family. Sounds morbid but I just want to make everything a bit easier for them should I up and die unexpectedly.
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This thread is making me extremely sad. I have tears in my eyes and my throat aches reading about people who lost their parent as a child as I just had to have "the conversation" with my 14 and 11 year old children last night concerning "if something bad happens to me". They shouldn't be saddled with that burden and responsibility. I hate this predicament we are in.
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Hearing all of this i would just get a gun and shoot my head,quick and painless but what about the mess and cost of funeral not to mention families reaction but the suffering would def stop.
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:'( Meinuk :cuddle;
What she said...... :'(
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:grouphug; everyone.
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I haven't read all four pages, but we had a terminal family friend that refused dialysis. Her creatinine was at 6 and she died after a week. She was only conscious for four days after that blood result. renal failure was the official cause of death.
My best friend's grandmother died ten days after quitting pd. My friend described it as very peaceful.
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Wow! I must have an angel looking over me. During my second year on dialysis, I quit going and did not resume for nine months. I had goten so frustrated with every aspect of my kidney disease and had given up. I am reading these posts here and it looks like I was VERY lucky. I was sick all the time during those nine months. I was depressed and just didn't care. Now I've learned to accept that I need dialysis and have a much better staff and dialysis center. The nurses at DCI are phenomenal!
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So many good posts, so much good life advice, so many good people in the truest sense. I confess that I have thought of ending it but two things have held me back...my wife children and now grandchildren, I love them so much...and when I asked my doctor, he frightened the bejesus out of me when he detailed how it would happen.
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I am totally and 100% with you.
Lisa\
My plan is to drink about 5 banana milk shakes. I figure 2 days! I would think if you don't pee at all (like me) you can't last too long.
But I am tired of the little things like the staff being idiots and now there is an unexplained lump on my nondialysis arm and I'm still dealing with diarrhea and my heart flutters all the time now.
Lord either heal me or take me home because I'm tired of Purgatory!
:bow;
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I was denied again for a transplant. I don't want to continue dialysis. I am angry, upset, frustrated, confused, etc. I haven't made a decision yet. I'm tired of being sick and tired.
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Anybody here remember the political humorist/columnist Art Buchwald? He died of CKD. In the end, he withdrew from dialysis, but shocked his docs by living a long time in hospice. Here's a link to his final column. I hope I'm not violating any rules here.
http://www.washingtonpost.com/wp-dyn/content/article/2007/01/19/AR2007011900444.html
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Thanks for posting that, malaka. Each time I read it, my appreciation of, and admiration for, Art increases. Indeed: "What's it all about, Alfie?" Alfie? Alfie?
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Wow! I can't believe that I found this thread.
I honestly thought that it was just me! I have thought about stopping quite a few times. I am still going back and forth about whether or not to jump through all the hoops to try for a transplant. My husband is willing to donate in one of those cross transplants(?) I'm O neg and he's A pos (Also a factor in why we never had children of our own)
I am so relieved to know that I am not the only one to have thought of this.
My husband has gotten better since I made him sit down and read some of the posts on IHD.
If it wasn't for him and my "babies" (the cat and the dog) I probably would have stopped or never even started!
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Cebushan, what do you mean about not having kids because of different blood types? I'm confused. I understand the dilemma of having kids because of kidney disease but not blood type.
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This was 25 years ago. There was something about our blood types that didn't work for the babies. I kept miscarrying. They tried to give me a shot that was supposed to "fix' the problem but it didn't work. We just left it at that because in vitro, etc. was just too expensive for us at the time. Don't feel sorry for us though. We have never been without kids. We are the unofficial babysitters for our church. In an emergency, it's a lot easier for us to come over to stay then try to find places for all the kids. Our neighbors kids are always at our door. I don't mind, they are great kids and always cheer me up. Plus, the dog likes them! :lol;
I may not have had biological children but I have "had" 42 kids. My husband & I sat and counted the ones that have stayed with us or we have taken care of over the years (Beyond just teaching at the Church). We call it "Parenting on the Run"! Most of those kids we have had the privilege of watching grow up, get married and have kids of their own. Now we take care of the "grandkids"!
:thx; Monrein for reminding me of All My Children ( :lol; )
Just yesterday, my neighbor's daughter picked some wildflowers and made me a card from "my secret admirer". :flower;
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This was 25 years ago. There was something about our blood types that didn't work for the babies. I kept miscarrying. They tried to give me a shot that was supposed to "fix' the problem but it didn't work. We just left it at that because in vitro, etc. was just too expensive for us at the time. Don't feel sorry for us though. We have never been without kids. We are the unofficial babysitters for our church. In an emergency, it's a lot easier for us to come over to stay then try to find places for all the kids. Our neighbors kids are always at our door. I don't mind, they are great kids and always cheer me up. Plus, the dog likes them! :lol;
I may not have had biological children but I have "had" 42 kids. My husband & I sat and counted the ones that have stayed with us or we have taken care of over the years (Beyond just teaching at the Church). We call it "Parenting on the Run"! Most of those kids we have had the privilege of watching grow up, get married and have kids of their own. Now we take care of the "grandkids"!
:thx; Monrein for reminding me of All My Children ( :lol; )
Just yesterday, my neighbor's daughter picked some wildflowers and made me a card from "my secret admirer". :flower;
Beautiful, and wonderful! :)
"true wealth"
you are blessed by Him,and should continue to be a survivor even though its hard, God has a plan for you my dear.
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I have quit dialysis 5days ago and are feeling fine any suggestions?
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Harley, could you tell us more about yourself. I did not see your intro, so don't know enough about your situation to offer any suggestions. Like are you acute or chronic. Are you diabetic. What caused you to be on D in the first place? Those things we would need to know.
Please feel free to go to Introductions first, then ask your questions. Welcome at any rate!
lmunchkin :kickstart;
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Iam on my 7th day and feeling fine I got chronic kidney disease in 2009 and justtred of living this way they told me that my heart would not take a kiddney transplant does anybody have a good idea about how long it will take
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Hello Harley,
It’s not the end of the world; however, I also was told I will not receive a kidney because of damage veins. I’ve been on D for 14 years and I was told this information after the doctors temped to give me a transplant 7 years ago. I was disappointed and hurt but learned to accept it. There are people who live active healthy lives on D. You are not the only one with this issue. How I was able to handle this, I keep myself very busy. I am involved with so many ministries, committees, etc. I find it very fulfilling because I don’t think about D until I get home. Also, I work a full time job. I do D in my house either late at night or early morning therefore I can enjoy my days. Please do not give up. You can live a healthy life. Can look into home D? It will help you cope better. I don’t want to see another member give up on something that can keep you alive and healthy while you enjoy your life.
Just my concerns!
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Harley, that would depend on a lot of factors, but the most important factor is do you still make water? If you don't make water (pee) probally 7 or less days. If you make water it could be a very long time.
Just my 2 cents!
8)
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I am Harley123199's wife. He passed away on 2/3/13. His last dialysis day was on 1/25/13. He lasted 10 days but went peacefully. It was a hard decision for us both to make. He had multiple health issues and every time he went to the doctor there was another diagnosis. He is in the promise land now and has the body that he deserves. Just thought I would let you all know what happened with him.
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I am truly saddened and sorry for your loss.
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So very sorry for your loss.
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I am Harley123199's wife. He passed away on 2/3/13. His last dialysis day was on 1/25/13. He lasted 10 days but went peacefully. It was a hard decision for us both to make. He had multiple health issues and every time he went to the doctor there was another diagnosis. He is in the promise land now and has the body that he deserves. Just thought I would let you all know what happened with him.
:grouphug; Deepest sympathy for you and your family Emma.
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When my transplant failed, and rejection took over, i believe I came pretty close to dying before I went to the ER and got back on dialysis. Of all the nasty symptoms I experienced during those days, I believe the worst was the confusion, severe depression and extraordinary loneliness that took over. My mental issues hid the other physical symptoms that I was experiencing and I believe that if not for an intervention by a friend, who came to my home and gathered me up and took me to the ER, I might well have stroked out that very night. I had stopped eating, but still took in fluid and had moved more or less permanently to an ottoman in front of the TV. I was huge and puffed up and had to be supported as we walked to the car. four days of intensive care with lots of dialysis and clarity was restored. So I can't recommend renal failure as a means of suicide.
I think we sometimes forget or ignore, that the poisons that build up in our bodies between treatments, or if we choose to go without dialysis, don't just affect our breathing, or our ankles, blood pressure or arteries, but those toxic chemicals also hang out in our brains and affect the clarity of our thinking and our mood in general. Whenever I get down about my situation I discuss my feelings with my nephrologist. We consider whether I need anti-depressant medication to counteract the effects of long-term dialysis or whether I just need to get out in the sunshine a little more. A little vitamin D can go a long way in getting over a little down patch. I always choose the sunshine route because I am not fond of the list of possible side effects from anti-depressants, but I understand that many dialysis patients do take them. The point I hope to make is that dialysis and all that goes along with it can damage even the sunniest disposition. If your relationship with your facility, or with your doctors, is adding to your bad mood, do something about it. Reassert yourself to insure you are getting good treatments and try not to give in to that bad chemistry that sometimes goes on in that brain.
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I know for a fact it isnt painful to die from renal failure...i watched my 86 year old mother, die after being given too many toxic pain meds in the nursing home, phetanyl patches all over...the next year at age 90 and with perfect mind, my 90 year old father was given psych meds for a uti and horrendously stong chill pills, the depacote caused heart attack in 90 year old diabetic, he survived the massive heart attack only to have his kidneys fa il the next day...this too was the doctor and nursing home, yet both undeserved, they went peacefully, very peacefully, and so did my father in law, whose kidneys failed at79 due to diabetes...i m adopted, so there is no diabetes, i had a very rare disease attack me acutely, FGN, and with the bun level of 171, the highest ever recorded at my hospital, and a survior...I too shouldnt have been here, i was only a couple hrs from death andmy family was called in...im only 52, yet i survived in a bliss denial that anything was wrong, and i blissfully kept slipping into hallucinations etc...no pain and didnt even realize i wasnt beathing hardly at all....wheeeeeeeeeeee...now i worry...
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My husbands doctor said it would take 7-10 days. The people I knew of did not last that long. They died in 3-5 days. My husband has 25 pounds of toxins taken off his body a week. So 25 pounds of toxins on his heart when he is already in heart failure, would be quite taxing. I don't think he would last more than 6 days. Doc is nephrologist, been around a long time, he said 7- 10 days. This is hell. It is a nightmare. I pray everyday for God to have mercy on him. He has little functional life. He cant make himself give up because he is afraid but he wants to die and is miserable. God have mercy. PLease God Please have mercy
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My husband has 25 pounds of toxins taken off his body a week.
I have about 20lbs of fluid taken off each week in my 3 hemo sessions, however, that does not represent "20lbs of toxins". If I were to drink more water, more fluid would be removed, but that would not indicate an increase in the quantity of toxins.
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I tried it, i didnt die and finally decided to go back. i went without dialysis for a week and half. My body especially my face was so bloated and swollen, I could hardly speak, could hardly get out of bed. It took a while to get to looking normal again because they could only take so much fluid off at a time. Things turned around for me and i got a transplant in 2010
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there was a older lady
at my unit
that lived 6weeks
after she quit
her treatments
she hardly came as
it was
but when she did
she was there
she was a spunky 90yrs old lady
her son
had died a few months
prior
from a heart attack
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I lasted five months before I lost consciousness. I wasn't in pain but I was hallucinating. My abdomen stuck out so far that half of me entered a room before I did.
With the news of someone dying from renal failure, I get down. It is so sad. We need to invent artificial kidneys or figure out how to do without.
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Death by renal failure takes too long (7-10 days) and if you you decide to end D it is better to go from zero to light speed in 1/1000 sec or less.
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So many tears for all that have gone, and the family, friends, left without their loved ones.
I am sure that we ALL think of ending D at one point or another. This thread has answered a lot of questions, yet poses so many more.
What am 'I' going to do? Keep on keeping on, not only for myself, but for the Grandson that I help raise. The neighbor that I help with his boat. The neighbor that I help with his garden tiller. The neighbor that I help with his lawn mower. We touch so many different lives, we don't realize how many people are affected by are presence.
I also need to be more thankful for that health that I still have, and to take better advantage of that health, to share more of myself with those around me.
This thread should be REQUIRED reading for many, and not just those on D, but everyone that has or could have any health condition that needs continuing treatment.
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Death by renal failure takes too long (7-10 days) and if you you decide to end D it is better to go from zero to light speed in 1/1000 sec or less.
I would strongly suggest avoiding that methodology - death by ballistically induced subcutaneous aperature is messy, and very inconsiderate to those who have to deal with your corpse.
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im not sure
if i posted
this before
there was
a elderly lady
at my center
she had pretty much
gave up on day one
but she came when
she wanted to
but then quit
she lived for 6weeks
her youngest son
died a few weeks prior
from a heart attack
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It seems like we have all asked our docs the same question and why wouldn't we? Mine,as many others,said about two weeks but I think we all know that it's gonna vary among us because we are each so unique thankfully. I myself have wanted to go to or get hospice help but was told that I would have to stop dialysis before Medicare would cover it.I suffer from b2m amyloidosis and I can't walk at all and my hands are so contracted that I really can't do too much at all.They really can't tell me how long I can expect to be here cuz they don't know enough about what I have and supposedly it could effect any body part at any time.Oh,well, I'm still thankful for each day I'm here.
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It seems like we have all asked our docs the same question and why wouldn't we? Mine,as many others,said about two weeks but I think we all know that it's gonna vary among us because we are each so unique thankfully. I myself have wanted to go to or get hospice help but was told that I would have to stop dialysis before Medicare would cover it.I suffer from b2m amyloidosis and I can't walk at all and my hands are so contracted that I really can't do too much at all.They really can't tell me how long I can expect to be here cuz they don't know enough about what I have and supposedly it could effect any body part at any time.Oh,well, I'm still thankful for each day I'm here.
Medicare now allows dialysis for comfort while a patient is on hospice. They don't make you quit, from what I understand.
More info here http://www.esrdnet5.org/Files/Education/Meetings---Presentations/ESRDHospice7-08.aspx
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Why drag it out, unless it is just a puff to get some fluid off. Then eat some banana cream pie.
:waving;
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My doctor of the month prescribed "sensipar" to help bring down my phosphorus. I got sicker than a dog. I was throwing up mucus all night. It was horrible. I wanted to cut my throat. I got weaker than a kitten and lost all stamina. If I stood up I was tired, and I needed to lay down, for two days. I didn't eat anything. Needless to say I'm not taking sensipar anymore.
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But sensipar is supposed to bring down your PTH. Do you know what your Dr of the month is going to do about that? You feeling a bit better now?
Love, Cas
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I am very thankfull that PD is working so well. How long? I can only hope, as my needle phobia would make going on Hemo a traumatic experience, every time.
I don't know much about how long a person can last with no treatment, but we did lose our pal/budddy/pet, Herbie, the Love Bug, the one-eyed Beagle we bailed out of the shelter when his original owner beat him in the head with a hammer at only 3 months old. Broken skull, right eye hanging by the muscles and nerves. We paid part ofhis bills and adopted him ten years ago. All he wanted was to wrap his paws around your neck and love us.
Herbie laid down one day, didn't want to get up, play, go outside, anything. I had to lift him up to put him into bed as he always sleeps alongside me. Took him to the Vet the next morning, Friday, the new guy, young, gave him a shot of steriod and told me to bring him back Monday if he was still not better. He had a better rest of the day, and Saterday wasn't too bad. Sunday he wouldn't move again.
Monday morning toolk him in and say the old Vet, he was busy in surgery Friday. Dr Frank took one look at Herbie and said he needed to keep him and run some tests, he didn't like what he was seeing.
Tuesday morning very early, like 6 a.m. Dr Frank called and told me it wasn't good. Herbie had gotten up and went outside with him to go P, but on the way back inside Herbie convilsed, and went into a coma. His kidney had failed, he is diabetic, and we never knew.
We went in and held Herbie while Dr Frank slipped in the needle to let him go.
Thursday to Tuesday, not a long time.
I don't doubt it could be quite similar for some people.
I am so mad at myself for NOT noticing anything during the (?) months, or years, that anything could have been wrong with Herbie. I'M DIABETIC, since I started PD. I COULD have tested and given him insulin, if I had known.
It's too late for Herbie, but any person seriously thinking about stopping dialysis really needs to think long and hard about what they are doing. You decision doesn't just affect you. It affects everyone around you. You can have support, but take the time to check out all of your options while you can. You may not get a second chance. You might be surprised how much people care and are willing to help if you just talk to them.
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I am very thankfull that PD is working so well. How long? I can only hope, as my needle phobia would make going on Hemo a traumatic experience, every time.
Hello Charlie, I "do" Hemo in a good Dialysis-Center and with my "tunneled" (for greater safety) Chest-Catheter,
I don't experience any pain at all (touch wood it may continue like that)...
... I was told by doctors that tunneled Chest-Catheters are very safe these days ...
... Have you considered this option?
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Thank you noahvale for all the useful information about catheters
and I shall read it all and "take in" the information you have so kindly provided.
It is true, perhaps I come over as being a little "euphoric" about my brandnew well working catheter,
but that is understandable, because I was horrified at the thought of dialysis before I started with it
and now, after having started with dialysis, I feel a bit euphoric, because dialysis does not seem to be as petrifying
as I imagined whilst fighting all those years to remain pre-dialysis...
Thanks again from Kristina.
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i wonder, how many bananas would it take to kill us? what would happen?
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I did hemodialysis for two years. Then I went to PD. I had trouble adapting but it was tolerable. Now, after six years, it doesn't work anymore, and the doctors put me back on hemo. The first session wasn't bad, until the end. The second session, on a Monday, was horrible, they took off four kilos. I watched my fluids like a hawk. Then this morning, dialysis ended with a cramp in my left lower leg. My nurse helped by lowering my feet. I drank my pickle juice and it worked. They took off two kilos. My weight keeps going down because I hardly eat anything and don't drink much. But afterwards I was wiped out all day. I have four surgeries coming up because of skin cancer. Last night they poked me five times taking biopsies. I can barely walk out of the kidney center to my car. At a restaurant people open doors for me because I'm so slow. I take sponge baths, but feel dirty anyways. I have my PD tube on my belly, and a new access on my left shoulder. I can't perform my usual chores. I just took a Norco and drank eight ounces of water. That, and two eight ounce cups of coffee, was my total fluid intake for the day. At 67, on dialysis, skin cancer tumors all over my body, I feel so suicidal, I even hate my rock and roll. I want to finish my screenplay about Disneyland, but its hard work unless I'm stoned. I feel I've had a great life: surfing, drugs, drink, dolls, travel, great jobs, bad jobs, and a great wife and I love my step son and his new son a lot. I published books on Disneyland, Real Estate Ethics, and got to meet great people. I think the easiest way to pass would be to eat a lot of potassium. I'd rather OD on heroin, but I couldn't score at my age. I hate to leave my wife alone. Even though I paid off the mortgage to the house, have gold mining stocks that should make a fortune soon, and I'm pretty sure my mother would give her a portion of my inheritance. Has anyone else gone through doing chemo, switching to PD, and then switched back to hemodialysis, and adapted?
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I did hemodialysis for two years. Then I went to PD. I had trouble adapting but it was tolerable. Now, after six years, it doesn't work anymore, and the doctors put me back on hemo. The first session wasn't bad, until the end. The second session, on a Monday, was horrible, they took off four kilos. I watched my fluids like a hawk. Then this morning, dialysis ended with a cramp in my left lower leg. My nurse helped by lowering my feet. I drank my pickle juice and it worked. They took off two kilos. My weight keeps going down because I hardly eat anything and don't drink much. But afterwards I was wiped out all day. I have four surgeries coming up because of skin cancer. Last night they poked me five times taking biopsies. I can barely walk out of the kidney center to my car. At a restaurant people open doors for me because I'm so slow. I take sponge baths, but feel dirty anyways. I have my PD tube on my belly, and a new access on my left shoulder. I can't perform my usual chores. I just took a Norco and drank eight ounces of water. That, and two eight ounce cups of coffee, was my total fluid intake for the day. At 67, on dialysis, skin cancer tumors all over my body, I feel so suicidal, I even hate my rock and roll. I want to finish my screenplay about Disneyland, but its hard work unless I'm stoned. I feel I've had a great life: surfing, drugs, drink, dolls, travel, great jobs, bad jobs, and a great wife and I love my step son and his new son a lot. I published books on Disneyland, Real Estate Ethics, and got to meet great people. I think the easiest way to pass would be to eat a lot of potassium. I'd rather OD on heroin, but I couldn't score at my age. I hate to leave my wife alone. Even though I paid off the mortgage to the house, have gold mining stocks that should make a fortune soon, and I'm pretty sure my mother would give her a portion of my inheritance. Has anyone else gone through doing chemo, switching to PD, and then switched back to hemodialysis, and adapted?
Hello Whamo, when reading your thoughts about your life etc., it becomes very difficult to give you any advice. After all, you have done a lot, seen a lot and it sounds as if you have really enjoyed every minute of it ... until now...
But ... despite all that ... there are still “things” and ideas waiting to be sorted out like finishing your screenplay about Disneyland and I am sure you ponder about some other interesting ideas as well... and then, of course, you hate to leave your wife behind and your stepson and his son. Are you sure you want to miss out on seeing how they are going to do in the future?
Of course, the skin cancer has to be treated urgently, it needs to be sorted out a.s.a.p. and it needs to be observed in the future as well, but at the same time you are with your family. Do you really want to miss out to see the Little One growing up? Your future-life sounds very interesting to me, especially after you have sorted out the cancer treatment and have accepted to go along with hemo-dialysis...
"My" own cancer was diagnosed when I was still pre-dialysis and that was the reason why I had to wait such a long time on the transplant-waiting-list for my kidney-transplant to “come along”. But at least I was put on the transplant-waiting-list and did go through it and then my transplant-treatment came along and gave me a much better survival-chance. This situation was not easy either, especially since my husband was diagnosed with cancer during his work-up to donate a kidney to me. Fortunately right now, we are both still “here and kicking” : me with my kidney-transplant and my husband is cancer-free right now and I do wish you good luck and all the best and please think it all over again and I do hope you decide to carry on and get this bad patch behind you a.s.a.p. and enjoy your family whilst you recover and get better. I was on hemo-dialysis as well and it was no fun, but in order to continue living I continued with it and have no regrets because of the good result after my transplant. Mind you, the first year after my transplant was pretty difficult, but I am still here and “things” are going much better now.
I send you my good-luck-wishes from Kristina and please re-think and please don’t forget that nothing is ever eaten as boiling hot as it is being cooked... (=that is an old Continental saying ...) :grouphug;
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I wanted to address the topic of how long it takes to die once you quit dialysis. I was told I was about to die from kidney failure in 2007. I had no symptoms. I was 45 years old. I was hustled onto dialysis before I even knew what it was. i had both hemodialysis and the peritoneal kind. After about nine months, I hated it so much, I quit. I was told I would die very shortly.
Well, that was 14 years ago. I kept waiting to die, but the only effect of quitting dialysis was that I felt much better. I got a great job, enjoyed my life and kind of forgot about dialysis. Finally, last year, I started to have edema and other symptoms. I will not be going on dialysis, but I consider the 13 symptomless years I had a great gift.
Sadly, they refused to put me on the transplant list in 2007 unless I stayed on dialysis. If they hadn’t been such jerks about it, I could have had a transplant several years ago and never have been on dialysis at all.
If you are young and in good health, I would recommend not letting one doctor railroad you into dialysis. There are new managed care strategies for people like me that not all doctors care about. I wonder why. But I could have spent years on dialysis waiting for a transplant unable to get a decent job, suffering from side effects, etc.. but it turns out it would have been completely unnecessary.
So if you are young and don’t feel sick, before you are rushed into the dialysis clinic, I recommend you get a second opinion.
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Wow! That's very encouraging. Thanks for sharing your story,.
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No can really tell us how much we have in this world. It's how much you want to stay and what you're gonna do about it.
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It's important that we live each day with a grateful heart. Be happy and be at peace that you lived well.