I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: WishIKnew on March 20, 2011, 01:19:18 PM
-
Do you all realize how much we discuss death, how often a question or topic turns to a discussion of death?
Do you think it's because we can discuss our fear here withput scaring our loved ones? Do you really think that being on dialysis is one step from death? Do you think Hemo patients fear/think about dieing more that PD? Do you think that many of us are clinically depressed?
I'm not judging and I include myself in this observation! Just observing and reflecting.....
-
We're on life support. Without it we die. Same is true even with a transplant - the possibility of your life ending is always there. So it's hard not to think about it, at least once in a while, regardless of how you approach it. It can be a reminder to enjoy what you have, or it can be something that's extremely stressful and depressing. How you are thinking of it can vary from minute to minute.
Yes, I do think we talk about it on here because it's easier to talk with people who are going through the same things. I had a good friend who battled cancer for two years and died from it while I was on D. I'm the one he talked to when he was most frightened. I "got it" in a way his wife, family and healthy friends couldn't, and I didn't need to be protected from his fears because I shared them.
I don't know about a difference between hemo and pd patients, though. Hemo is a thrice weekly reminder of what the worst case scenario looks like. PD is a daily reminder of the risk of infection. I know that I felt more comfortable on home hemo in part because I wasn't exposed to those other patients at the center who were so much worse off than I was, but it didn't make me any less conscious of my own risks.
I think being depressed about ESRD is part and parcel of having it. I think most of us went through at least a small period of time where we would have been diagnosed as clinically depressed. But the human mind is an amazing, adaptable thing, and many patients work their own way through it. But thankfully, there's help out there if you can't do it by yourself, and there's no shame in asking for it.
-
Not surprising when the mortality rates for patients with ESRD are worse than for most cancers. Overall, the median survival is lower than 6 years from starting dialysis, PD or HD. Varies with age, of course. By age, the 5-year survival rate after starting renal replacement therapy is:
• >90% for 18 to 30 year olds;
• 70% for 45 to 54 year olds;
• 30% for 65 to 74 year olds;
• <20% for >75 year olds.
These rates are much lower than in the general population. Mortality rate for 45 to 54 year olds is ~18 times that for people of the same age in the general population. This is also true for the elderly: mortality rate for >75 year olds with ESRD is four-fold higher than age-matched controls.
Statistics taken from the Oxford Handbook of Dialysis 3rd edition.
To me this tells me that I don't have much time left (I'm 70), so I'd better make the most of it. :2thumbsup;
-
Yes, I agree. This is such a safe place to talk to others who are in the same boat as you are, and the ones who have already been where you are. No way can most people understand what we are going thru. Even the fatigue is difficult to describe to others. Being 72 and not yet on D, I am afraid that when the time comes for me to go on D, I will be a sick, screaming, addlepated old lady who has forgotten everything she knows about D. According to those statistics tho, I wont be around for too many needles.
-
I have often asked myself ..do i consider myself to have a terminal illness ? and yes i guess i do , because for me the definition of terminal illness , is one where the is no cure and secondly it will kill you, both of which i think apply to kidney failure. We think and talk about death more because we have been faced with it by having this illness. Most people dont walk about expecting to die like we do , but its the one thing we will all do ! We just face our demons on a daily basis !!!
-
I'm having to think a lot lately about my will; it needs to be updated. I have an autistic son who lives with his day in the UK, so I am having to research inheritance tax/estate tax in both countries. I wouldn't be thinking about it right now if it weren't for CKD...and maybe that wouldn't be a good thing, I don't know. I think more about how this affects my life than how it will lead to an early death. I keep thinking about my mother's friend whose sister had cancer for decades. She ended outliving everyone! That woman is STILL alive! I don't think of CKD/ESRD as a terminal illness; I think of it as a chronic illness that needs to be managed.
We've all heard the stat that the average survival rate on dialysis is 5 years. I wish people would stop spouting that one. My mother survived for 5 years, but she was 82 years old and had been in clinic all that time. I am going to be a very different dialysis patient, and I plan to be around for longer than that! I suspect that a fair number of very sick and elderly people are slung onto dialysis when perhaps they should have pallitive or hospice care. That's not to say that docs should give up on them just because they are older...far from it, but it does mean that perhaps for some patients, it is one step too far and is a torturous burden, but it is one more person from whom money can be made. And these very ill patients skew the statistics.
I would like here and now to make a request. It may be hard to comply, but let's please try. Can we refrain from referring to all of this as a "journey"? It makes it sound like we're about to start trekking the Himalayas or rafting the Amazon. It tries to turn CKD/dialysis into some sort of spiritual trip, and it is not. The people in Japan affected by the earthquake and tsunami are having to rebuild their lives, and no one is talking about them being on any sort of "journey". We are having to rebuild our lives, too. I don't like it when people try to make it sound like there's a picnic at the end of a journey because for a lot of people, this damn trip will never end. There is no cure; there is no destination (unless you want to define death as the end of the road).
Thank you.
-
:rofl; Although i shouldnt laugh i do, when people refer to it as 'our journey' where is the destination ? mine's the dialysis unit !
-
My destination is some abyss somewhere, I'm convinced! :rofl;
-
:rofl; Although i shouldnt laugh i do, when people refer to it as 'our journey' where is the destination ? mine's the dialysis unit !
You guys crack me up.... journey.... I thought that was a singing group.....LOL
Death.... a subject I hate to think about...but I have now and I really never did think about it.... but I have put together my will and I still have to put together where the final resting place will be.... but every time I think about it something else distracts me..... wonder why......
-
Uh-oh. I like the word 'journey' and use it for all sorts. I've probably used it talking to you, MM. :oops;
I think it's a great, neutral word. There is nothing about the word that suggests it is a positive experience, and I feel it perfectly sums up the life course I've been on. As a kid, I loved roller coasters (not sure how anymore) and 'roller coaster' is used all the time around here to indicate something entirely negative. Thirty years ago I might have argued that roller coasters are fun, and nothing like kidney disease. (No, I probably would not have given it enough thought, actually).
I feel I am on a journey when it comes to kidney failure. Cannot really describe it any better than that. When dialysis was looming for a second time, I pictured it as starting this long slog that was going to be physically and emotionally demanding. I was right!! When I look back, I look back in the same way that we look down from a mountain and cannot believe how far we've come. When I describe my experiences to others, I often find myself thinking "Oh, wow. This sounds like a lot. Did I really do all of this? Hope I'm not scaring them. I made it here, and so will they do!"
As someone who is terribly particular about words, though, I will certainly do my best to not refer to your experiences as a 'journey' in future, MM. :2thumbsup;
-
Oh, cariad, I've used it, too. And to be fair, it's not an inaccurate word, but I have seen it used for this purpose on so many different kidney sites that I'm wishing someone might come up with a new analogy. Actually, I think YOU might be the perfect person to create a new one! It would be a wonderful contribution to future conversations!! (Maybe something more in the way of "slog".)
-
Slog is a fun word. I think 'forced march' is fitting, but I don't want to scare the newbies with my honesty! :rofl;
-
Hard slog ?
-
I also like the word journey, in the sense of the passage from one stage or experience to another, as opposed to an excursion, a jaunt, or a holiday. For me, there's real work involved in a journey, and the word's origin reflects the idea of a day's work (done by a journeyman or day labourer). Referring to kidney disease as a journey and going back to the root of the word also puts me in mind of taking the whole sordid mess one day at a time since it's way too daunting if viewed in it's entirety. A journey also has the implication of some considerable length of time, it's not a quick trip, and there's also (in my use of the word at any rate) going to be some obstacles involved. I feel a huge difference between "a journey by boat" and "a cruise".
I also think it's a "journey" that requires much courage, the willingness to face fears, the ability to endure pain and hardship, the determination to find hope when that particular candle is barely flickering at all and many times the slogging turns into severe trudgery. (That's a trudge through drudgery).
I also understand your point MM, because frankly as much as I love learning new things I too get bloody sick and tired of "life's valuable lessons".
-
I also think it's a "journey" that requires much courage, the willingness to face fears, the ability to endure pain and hardship, the determination to find hope when that particular candle is barely flickering at all and many times the slogging turns into severe trudgery. (That's a trudge through drudgery).
I think I spot a winner! Trudgery. Oh, how I lit up when I read that word. The sentiment is perrrfect!
Now I'm going to have to lie in wait for the next newbie, at which point I'll pounce and welcome them to the trudgery of dialysis and transplant!
(I really should be cleaning my house, you know. The place fell apart after last week's drama.)
Well done, monrein. You have added to the IHD lexicon!!! And as MM said, it's a wonderful contribution to the site. (We'll need a little copyright monrein sign to attach to each usage.)
-
"trudgery"
Yeeeeessssss......I like that!
As far as "life's valuable lessons", I'd like to think that I didn't need an incurable illness to experience empathy, understanding, compassion and sacrifice. I already knew that life is hard and painful and sometimes just frightening. I "learned" enough from my only child's autism, and I didn't need CKD to reinforce any lessons, thank you very much.
I don't think suffering and fear serve any constructive purpose. They just create more suffering and fear. We can make up some sort of cosmic purpose...some universal lesson...if it makes us feel better, but while I do not claim to be the wisest woman on the planet, I'm not so stupid as to need CKD to understand anything, either.
I faced fears and endured pain and hardship before CKD. I don't need, nor do I want, more of the same.
I've had enough trudgery!! Take me away!!!
-
trudgery, I like it.....
though slog works for me, too.
-
The concept of associating death with a journey is very old.
In Greek mythology, there is a journey from the world of the living to the world of the dead. En route, you have to pay the boatman, Charon, to ferry you across the river Acheron. Inability to do so leaves you wandering the river bank for 100 years.
In Christianity (well, the Catholic version), immediately after death, a person undergoes judgment in which the soul's eternal destiny is determined. Some are eternally united with God in Heaven, others descend to hell. That division is not clear-cut for everyone; some souls are not sufficiently free from the effects of sin to enter the state of heaven immediately, nor are they so sinful as to be destined for hell either. Such souls must deviate from the direct path to spend time in purgatory to be purified of venal sins. That is, if they haven't bribed the Church in their lifetime to absolve them of sin. :laugh:
I see us living in a sort of purgatory. Unlike our ancestors, we are able to confounded Death. But only for a short time, after which our journey will continue to the oblivion that our contemporaries have achieved a little earlier.
-
"We know not the day nor the hour".
-
If it wasn't for dialysis you would be dead.They should call it Die-alysis lol,But no,Death is not the end just the end of this body the soul is eternal the body is just a shell.You dont learn this in conventional teaching but in spiritual awareness.
-
I may have esrd and be on dialysis, but I look at it as it a life support machine that keeps me alive and i am very thankful for it. Yes I do think of when its my time, I told my hubby what type of services I would like and what cemetary I want to go in for my final resting place. I will miss my family that I will be leaving behind but my journy will be taking me to my family that already went on their journy.
-
If it wasn't for dialysis you would be dead.They should call it Die-alysis lol,But no,Death is not the end just the end of this body the soul is eternal the body is just a shell.You dont learn this in conventional teaching but in spiritual awareness.
Yes, and since you brought this up, God's only Son, Jesus died for our sins so that if we accept him as "the son of God" we will live in eternity with Him once we die. That is such a comfort to me.
That subject is also easier to say on here, where I can type and not have to deal with people's reaction to the TRUTH that I have come to know and pressured to share.
-
"DITTO" Rerun! We All were created with a Will. The choices we make in our lives will determine our destiny in Death. Hell or Heaven! You either believe in Jesus or you dont. IT IS YOUR CHOICE!
I am a 4'11" female about 150lbs and I ride a big Motorcycle. People say to me all the time, "arent you afraid of getting killed on that thing?" I simply answer "No! Im secure enough in my Savior, that I know where Im going when I die!" Not that Im rushing it & causing it to deliberately come about, but if it happens, it happens! If God wills me to come home, Im going and no power on this Earth is going to stop HIM!
-
Isn't it interesting people really start to talk when we realize life is finite. The sad part about this gig is the lonely hours. When you are sitting around thinking about the things you have done and the stuff you have yet to do. They need support groups for ESRD. I know the clinic isn't it. Of course I am a prick so why would it be good. And I am kind of young so I don't relate to you Old Timers.
-
I like the word "journey". It doesn't mean we are going to Disney World! I have been through so many things, and I know each thing changed who I am. I lost my little sister to Downs Syndrome complications, oldest brother ran away at 18 and never saw him for 35 years, lived in 10 different homes, Mom divorced Dad --- and that was all before age 12! Lots more followed. I have never said "why me". Why not me"? Others go through so many more things. My sister in law died at 54. Why shouldn't something happen to me? I'm not even in the usual groups for kidney disease. My children have always laughed at me because I always say "I am going to Heaven". No question. I've been tested and I know I pass. Cocky attitude? Nope, just comfortable with death. I ache thinking how sad my children will be, but I tell them all the time that they will go on to have good lives with good memories.
As for us "old timers" , you don't think you want to life to be 99 until you turn 98! We all want one more day. I love having a place to talk openly about death. My last conversation with my sister-in-law was about death ( a couple of weeks before dying) She said she was not afraid to die, but she was afraid of the pain that went with it. She died at home with her family under Hospice care and never had pain. May we all go without pain surrounded by those who love us. And so----my journey continues.
-
Well, maybe I'm just wired differently because I am not on a journey, rather, I am in a battle. I'm not floating down the placid river of CKD, I am engaging in hostile activities against it.
I had to fight to get my son the best education so that he could have a good life despite his disabilities.
I've had to fight to be educated, to choose the best for myself so that I could continue to support the people in my life who need my help.
I am choosing to fight for patients who don't have a voice and even if they did wouldn't know the first thing to say.
I know I can't fight death, but I can fight for more life, and that's exactly what I intend to do.
-
Guess it is just the use of the word. I wouldn't be where I am if I weren't a fighter. I have questioned every step of the past 10 years. My neph had never had a patient with a 100% PRA. So, he researched and I researched. I knew every question to ask, who to ask, and how to make a fuss if I didn't like the answer. I was one of the first at our center to do IVIG and Rituxin infusions to improve PRA. I had been bugging them for 3 years about when they would offer it. In the meantime, I was listed at Johns Hopkins and Carolina Medical Center, both were doing the infusions already. I think we are all fighting like crazy -- we all are in a huge battle. But I think I have more knowledge now, than 10 years ago.
I don't think many of us are just bobbing along drifting down the river. I am been in the rapids, portaged the canoe, fought the elements, and still moving forward. This isn't over for me. I am so grateful for this unexpected transplant, but I knew the first month that FSGS was already effecting the new kidney. I think I was just trying to say that journeys aren't just pleasant happenings. We crashed landed in Chicago a few years ago. Braced for landing, fire trucks lined up, foam on the runway -- we had blown all tires on take off from San Francisco. We were on vacation -- a journey, yes, but that part wasn't fun. Husband was with airlines for many years, so we had several "exciting" experiences with planes. Being an advocate is wonderful. Our family has been deeply involved with the NKF for several years--volunteering, raising funds, interviews, etc. My daughter is doing a radio interview reagarding NKF next week. We are fighters. So, we just disagree on the use of a word. We are still in the same boat (oh no -- boats go with rivers!! LOL!!) What most don't know is that I gave up hope last summer. Took my name off two of the centers lists. That lasted a couple of months and I kicked myself in the rear and told myself to "get over me" -- live! And the battle countinues, the fight is not over, and hope springs eternal.
-
*