I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: G-Ma on August 19, 2008, 02:43:44 PM
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Come on everyone, jump on me......Am I the only one in this world that is NOT going to pursue a transplant? I know it's just another "treatment", therefore I choose NOT to put my body into another cycle of ""up and down"" roller coaster rides. It is on a somewhat smooth ride and I choose to keep it this way. Everytime I walk into the Dr's office I know the first question out of his mouth is going to be...Can I put you on the tx list??? NO NO NO, and you wonder why I don't want to go to the flippin Dr. Is he getting a cut??? ha ha...am I another notch in a belt?? :Kit n Stik;
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I have thought about that also
my husband thinks I will get a transplant and everything will be wonderful
well, it was not wonderful before the transplant so what are the odds........
I may never fell the same again -- health wise
and it is a big surgery
and I am afraid
and what makes me think I will ever find one
and
I am afraid
so afraid
but sick of D
maybe that is why I have a hard time losing
20-30 lbs
I get close and then get afraid and then gain some again
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hmmm twirl...is that me talking? oops, no husband but a special other who feels the same way....let them get the transplant???? how about it and you and I will go to the Bahamas....... :bandance;
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I have a friend who started dialysis at 34. She has been doing hemo at home for 20+ years and has never wanted a transplant. She does well on dialysis and never wanted all the side effects of the drugs, which there are many. She is saving a transplant as a last option. She doesn't want on the list because you have to keep up on all the tests like mammograms, pap, heart etc..
I have had a transplant and it went well for 17 years. When it died a big part of me died too. I couldn't keep my job and had to move etc... all the stuff I've already whined about here on IHD.
I frankly don't know if I want another one. It is not an easy road and I don't think I could go through losing another part of me.
You could just go on the list to shut everyone up and if you get a call just decline it. Maybe when you are ready someday you'll have enough time on the list to be called quickly. Just a thought. Good luck on your decision.
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Count me in on the "no transplant" list. I don't want one now because of those exact reasons, and I get so sick of it when people (mostly medical professionals and some family members) keep saying I should get one. Sometimes I think people forget that it's MY decision and I want to do what I'M comfortable with. I don't care what "statistics" may say, I'm simply not ready to go through all the risks and side-effects of a transplant right now.
Adam
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Oh Adam, let's not even mention statistics...I am so sick of hearing those numbers spouted by all the people whose kidneys work just fine.
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To transplant or not to transplant has been a huge debate both here and on other parts of the web. I never thought that I'd go for a transplant, the thought of steroid therapy freaked me out, and when rejection finally comes (and I have no doubt that I'll reject) I think that I will have the same feelings as Rerun. But - back in 2005, I decided that I would go on the list.
And now 3+ years and one phone call later, I am still waiting. I won't accept a living donor, but I will gladly accept a cadaver kidney. I know that I will be trading therapy for therapy, but I am excited at the thought of traveling again. (NxStage is not good for international Travel, and with the dollar so weak, I can't afford to pay for dialysis) I see a transplant as a ticket back to Europe.
Dialysis modality and Transplant are an individual decision - The most important thing is that we strive for our best personal health so that we can enjoy the life that we have as survivors, whether that means hooking up to a machine or popping a boatload of pills as long as we are doing what is right for ourselves, as far as I am concerned, all is right in the world.
And, just to stir the pot, there is a study out there that shows short daily dialysis rivals a cadaveric transplant! http://www.billpeckham.com/from_the_sharp_end_of_the/2008/05/daily-dialysis.html
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Oh yes meinuk...I would NEVER accept a living donor and people look at me as if I have two heads when I say that. :banghead;
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Welcome to my little corner of the universe!
I cannot get a transplant even if I wanted one.
So here I am on dialysis for life.
I hope I survive this! :rofl;
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I'm also not on the transplant list. I think I've already listed my multitude of reasons on an old post and I don't think anybody wants to hear them again.
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i would take a transplant each and every time that its offered,be extremely lucky to get 1, but you know what i mean,
all the steroids have got to be better than this d crap.
anything that will return my life to normality for months or years i'm prepared to gamble on.
i will never understand why someone would not want a transplant,but each to their own
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I don't like to talk about not wanting a transplant, since we have so many happy stories here, and I rejoice with each member of our family who has been able to get one.
I personally feel that a transplant would be far more challenging for me than dialysis. First of all, it would take so much engineering. there is no list here, and I would have to have so much put in motion between countries.
Secondly, since there has been some kidney failure in my family, I would never take a kidney from a relative.
thirdly, I have great concerns about dealing with the immunosuppressant therapies, and the need to have an extremely sterile environment. Not sure I could guarantee that.
I would love the freedom that a transplant would give, however shortlived, but right now, though I hate dialysis, i appreciate that it is keeping me alive to see my grandson grow up.
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Hubby is not on the transplant list and does not want to be. Mainly because of the drugs. he is doing so well on dialysis that he really doesn't mind. (not that he loves dialysis) I am a 1 antigen match but he refused to take a kidney from me. One neph kept asking him about going on the transplant list until hubby told him not to ask anymore and he would let the transplant team know when HE was ready to go on the list!! The other nephs that he sees have not pushed it at all . They are just amazed at how well he is doing. This month is 11 years on dialysis!! Another reason for not wanting a transplant is that he feels so good that he is afraid that he may not feel as well with a transplant when he has to take all the drugs and deal with side effects and having his immune system shut down. For some people transplants work really well while for other people they are not as well as when they were on dialysis.
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Maybe it's because I got my first transplant at such a young age and it worked so well for so long that when I went back on dialysis each time, there was never any question in my mind which route I would choose. Personally, dialysis is simply too much to deal with on top of everything else that goes with being a mom. I have been able to do more for my son in the four months that I've been active since transplant than I did the whole 18 months I was on dialysis, and we haven't even gotten to the busy time of year yet!
However, that is my life. It's not G-Ma's or Adam's or Rerun's or anyone else's life on here. I won't pretend to understand why someone would choose dialysis over transplant, but I'm not going to try and change anyone's mind about their treatment, either. If they're happy (as happy as you can be with kidney disease, anyway!), then that's all that matters.
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G-ma let's go I heard dialysis on the beach is really the place to be :waving;
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Flip Bob
I want to know your reasons you are always so positive and such a good -- I don't know what but you are good
why
me - I am afraid
and my twin will not give me one anyways
my mother filled out papers for a kidney and turned them in and that was a thursday and she got one the following tues and she died
so
where is the post so you do not have to type all that again
cheryl
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Okay, here goes....
1) my age
2) the hassles of more surgery and a ton of meds
3) I do okay with dialysis
4) about half of cadaver transplants fail within two years
5) I won't be considered cancer free for another 4.5 years
6) I'm HCV positive (got it in the dialysis center)
7) I have a house, a business and critters to take care of
If I was much younger, I'm sure I would go for it. Right now, I'll just be content to enjoy life for as long as I can.
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I ""died"" in recovery after the last major surgery I had, was restored and spent 3 days I think with not a clue who I was or who anyone else was and lost some memory..the kids were fantastic but I don't want to even think about putting them through that again. I knew I finally was making it when my son bent over to tie his torn shoelace and I told him it was time to replace that crayon......yes I did move words around..old Webster was spinning I'm sure. The "drugs" are another part...so I get help paying until I'm 65 and then have to stop them....that's when ins quits and my check becomes half of what it is now so have to save now so I can pay for binders at that time. It's wonderful having ESRD and being "disabled" from a corporation..ha ha. NOT...
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I am surprised at people feeling some of the same things I do about transplants
I take enough meds now
I hear the transplant drugs are very expensive
and I do not care about having fund raisers
I just don't know
but
it is nice to know other people are unsure
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I am surprised at people feeling some of the same things I do about transplants
I take enough meds now
I hear the transplant drugs are very expensive
and I do not care about having fund raisers
I just don't know
but
it is nice to know other people are unsure
Jenna takes 2 meds that are immunosuppressants and are essential. Other things are just vitamins and aspirin. It's alot less since she no longer has high blood pressure or any of the other problems on dialysis.
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transplant stats from UNOS
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I don't want a transplant because medicare will only pay for meds for three years. Then how I would pay for them? I also had cancer removed in April. I was in a coma six days and almost didn't make it. I will not even consider a live donor. I once had two working kidneys, then for years had one working kidney and now just have one non working kidney. I would never put someone at risk of living like this.
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meidcare only pays for three years ----- oh no
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there is pending legislation to increase it
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I don't want one for the same reason a lot of people here don't G-Ma--the drugs. Plus I do okay on dialysis--10 years now. I read that some of those anti-rejection drugs can cause cancer on top of everything else. Half my family died of cancer on my mother's side; she's had it twice already so I'm predisposed to it so NO THANK YOU. Why jump out of the frying pan into the fire?
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Anyone with a high risk for cancer has plenty of reason to think twice about getting a transplant. My transplant team made it quite clear that they pretty much expect the majority of their transplnat patients to at least end up with some form of skin cancer. If I had a serious family history of cancer, I might have thought twice about it as well.
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I have had 7 years to mull this one over. I'd have to say I don't feel I'd want a transplant, though not absolutely sure.
I don't feel comfortable taking my sister's and I don't feel comfortable waiting for a deceased kidney because in the back
of my mind I can't come to grips with thinking someone dies young and healthy so I can have their kidney. Who knows
how I will feel when I really start feeling sick again. I've also been on prednisone before and know how yucky I felt on it.
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Don't know if I should type my feelings out or keep them to myself like I have been doing............. Been on the magic list for 2 1/2 years. 6 living donors tested. PRA of 100%. Listed at two centers and had testing done at Johns Hopkins. Have FSGS. So, I think I am coming to the point of accepting that a transplant won't happen. Part of me just doesn't want to worry about it anymore. I don't feel like I am giving up, but at some point I have to be realistic and move on. FSGS can affect the transplanted kidney. I haven't talked to anyone in my family about this. They all thought this would be easy and quick. Nothing is easy and quick. And it is expensive to go through the tests each year to stay current on the list. After paying your deductible and co-pays, it all adds up. If my PRA prevents a transplant anyway, why bother to continue with the process? I was so naive 3 years ago. Now have to really re-consider where I am at and what I should do. G-Ma and others, I think I understand your thinking. None of this is easy. Thanks to all for your honest answers. :grouphug;
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Thank you ..... I'm not the only one who feels this way ... :yahoo;
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All opinions and views here are so appropriate. We each have different views, beliefs and circumstances and I approeciate everyone's reasons for either wanting or not wanting to go down the transplant treatment path. I certainly would not look down on someone because they decided not to go with tx. At this stage as we all know it's just another form of treatment, not a cure... and just because you get a transplant doesn't mean life is automatically wonderful or problems are solved. You could exchange one set of issues (dialysis) for another set.
For me though I'm in the "want" category. Here's my reasons why I've been on the list 2 and a half years and waiting....
1. Drugs - people talk about drugs - but I'm on drugs as it is with dialysis - heparin, iron, epo/aranesp, renegel, sensipar etc... to me there's no real difference in if I swap those for others - potentially loss.
2. Dialysis - stresses the body and causes its own issues over time as we all know
3. Dialysis is a pain in the ARM!! My life would be so much easier if I didn't have 3 chunks of 5+ hours taken out of it a week to sit on my backside and be bored out of my brain enduring this stuff. Added to which I find the fluid and diet issues difficult (specially fluid).
4. I love to travel, and while it's not impossible on dialysis, it isn't very easy and a real pain to schedule, not to mention extra costs if you're going overseas and the risk of something happening away from home and local care (and of course, if you're away and THAT CALL comes.... that is a fear of mine too).
5. Home hemo/nx isn't an option for me - I live alone and simply don't have the co-ordination etc to needle myself (even if it was allowed, which I am not sure it is - I think you need someone there). So I am stuck with in-center. Maybe if I could do it at home, nocturnal that would change things a bit since my lifestyle would be much less restricted, and impacted... but still.
6. Rejection/failure/complications with surgery. Yes. Absolutely a concern.. but you know what... I would take 3 months/3 years whatever away from the machine if I could. It's all about risk, and right now I'm healthy enough apart from the renal issues that I feel I would do OK with surgery and whatever else. The benefits would outweigh the cost in my opinion.
Others have mentioned the issue of live donation vs. cadaver donation and not wanting a live donor. You know what - I REALLY understand this one. While I would not reject a live donation, it has been a very real thought to me that if I did get one from a family member that I would feel very responsible for them - and would never forgive myself if something happened down the track that was a result of their donation/having 1 kidney etc... not to mention the issues that might happen if a live donation took place - and failed/rejected straight up (sort of like a wasted effort)... In those respects I would definitely prefer a cadaver donation because a lot of those issues aren't involved. I certainly understand those not wanting a live donation.
I've enjoyed this thread.
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If someone is doing well on dialysis I think "if it ain't broke, don't fix it." I am grateful that that option exists and that patients have a choice (if they are listed, sorry Kit, you know I pray things change.)
Jenna was half awake and half asleep on dialysis. No big problems, just half there. Now she's got an alertness and stamina that is a huge change.
Someone said that dialysis hasn't changed much, but transplants have improved leaps and bounds the last few years. I guess the long-time dialysis patients could address that.
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Aside from the case of patients with some highly specific contra-indications for transplant, there is no rational argument for preferring not to have a transplant. Countless large-size statistical studies have repeatedly proved that transplant doubles the life expectancy of most patients with endstage renal failure, and for diabetics, the life expectancy is tripled with a transplant as opposed to dialysis. Those statistics allow the patient to assess all the downsides of transplant, from the risk of the surgery, the dangers from toxic immunosuppression, the chance of losing the graft, etc., since all these factors are combined into one by the life expectancy data, which prove that transplant is decisively better than dialysis.
Perhaps some people take the view that their particular psychological constitution is such that they would rather not endure the stress and the uncertainty of what might go wrong with a transplant, but to pretend that that is a good reason for not getting one is like a desperately poor person saying he doesn't want to be a billionaire because then he would have to worry all the time about possibly misinvesting or losing his wealth.
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Good Poing Stauff.
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i'm not interested in a transplant (can always change my mind, maybe) which some of my family just doesn't understand (they don't ask either) they think i'm living off the government. i worked 40 years and earned every penney of my disability, thank you very much. now if i were in my 40's and still had children at home it might be a different story. but i'm still thinking on it. i too feel, "if it ain't broke don't fix it" yes i'm sick, but on the dialysis scale of things i'm on the extremely healthy end of the scale. perhaps if things were to get worse....but then again maybe not. (can you tell i'm a pisces?)
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I'm affraid of getting a tansplant because I have settled back into my life so nicely. Transplant means something new and dangerous and uncertain. Plus, my nurse keeps saying "get ready for your transplant, it's [insert holiday] and there are lots of accidents this time of year" which really creeps me out.
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Ok, gang, I'm in on this debate. (which is ironic, as I am listed with UNOS since 6/05)
Someone said that dialysis hasn't changed much, but transplants have improved leaps and bounds the last few years. I guess the long-time dialysis patients could address that.
Karol, shame on you. And in response to this quote, I only have one word: NxStage
...but to pretend that that is a good reason for not getting one is like a desperately poor person saying he doesn't want to be a billionaire because then he would have to worry all the time about possibly misinvesting or losing his wealth.
And Stauffenberg, depressed misanthropic attitude aside, how dare you demean any person's conscious decision as "pretend". You quote quickly outdated data to further your pro transplant agenda. There is room in the world for many agendas, but no room for condescension of such magnitude.
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Ok, gang, I'm in on this debate. (which is ironic, as I am listed with UNOS since 6/05)
Someone said that dialysis hasn't changed much, but transplants have improved leaps and bounds the last few years. I guess the long-time dialysis patients could address that.
Karol, shame on you. And in response to this quote, I only have one word: NxStage
Shame on me? I have no experience with NxStage.
But I suppose it's true, and if it were widely available it would be great.
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Karol, the shame is in perpetuating the "dialysis hasn't changed" chestnut when you are an administrator on a site that is filled with (and founded by) people who's lives have been dramatically changed by the introduction of NxStage on the marketplace. (and this is just the beginning)
One of the biggest reasons that NxStage is not as widely available is the perpetuation of the myth that "nothing has changed" - the industry is MIRED in this attitude, and slow to grow and adapt. The truth is, we have the technology, we just need to educate people.
And ditto for incenter nocturnal. (I'm just too lazy to type a diatribe on that as well)
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I still think most dialysis patients do not have those options available to them and much needs to be improved. It's not an urban myth. That's just the way it is.
I am glad there are people here like you that give good testimony to the improvements that have been made.
I am always learning. Being an administrator just means I get to work more. It doesn't mean I am smart. :-\
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I wasn't disparaging your intelligence (I hope that you are secure in the high esteem in which I hold you). I am simply stating - look around, you see examples of the advance in dialysis every day, yet you quote that nothing has changed.
This is the problem. I agree, it isn't available, and I am saying that we need to speak up and educate these centers, teach them that it is there, they should stop making excuses and help people.
I will go so far as state that it is medical negligence to withhold maximum dosage for people on dialysis. When Jenna was in center, she was given enough dialysis just to keep her alive, no wonder she was sluggish, with no energy. The current incenter modality has put every single patient on a minimum diet for financial reasons - turning people into Dialysis Zombies.
I am pro transplant, (actually pro transplant choice). I am against the stagnation that exists in the M/W/F world of dialysis, and I would hope that others on this board (you included) would be just as incensed.
I repeat, the technology is out there, it is just not being implemented on a wide scale, and in order for it to be implemented, we need to teach people, and not perpetuate the same old stick in themud, there is nothing we can do about it attitude, - which is how I perceive your defeatist quote "dialysis hasn't changed". Because, I'll tell you, first hand, for me, it has changed.
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I agree that dialysis has improved and is continuing to do so. Some of the new membranes being developed look extremely promising. How soon these products reach us is another story. Dialysis has become a "cash cow" for the major companies in the business. To me, this equates to maximum profit and minimum treatment. Will these companies that are making all the money be willing to invest in research and new technology? As hospitals and medical groups "farm" out their dialysis business, the relationship between new medicine and dialysis becomes more distant and the patients are left to fend for themselves.
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I had no intention of pursuing a transplant when I started PD five years ago. Four exchanges a day worked just fine for me. Three years into PD they said it wasn't working as well as they hoped and I needed a bigger bag (2500) or more exchanges, so I went to 5 exchanges a day. A year after that same conversation, so I went to 6 exchanges a day. About 5 months later they virtually demanded I go on the cycler with the 2500 bags. Well, since I had begun losing weight, but hadn't done anything to firm up my belly, 2500 worked out just fine. I got to thinking, however, what's going to happen a couple of years from now? To me hemo is just never going to be a part of my life, so I completed all the tests to get on the transplant list. Basically I consider it a pre-emptive strike. As long as the PD keeps on working, no problem. Hopefully by the time it maybe stops working I will have received a transplant. I guess what it comes down to is it's never too late to change one's mind!
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Ok, gang, I'm in on this debate. (which is ironic, as I am listed with UNOS since 6/05)
...but to pretend that that is a good reason for not getting one is like a desperately poor person saying he doesn't want to be a billionaire because then he would have to worry all the time about possibly misinvesting or losing his wealth.
And Stauffenberg, depressed misanthropic attitude aside, how dare you demean any person's conscious decision as "pretend". You quote quickly outdated data to further your pro transplant agenda. There is room in the world for many agendas, but no room for condescension of such magnitude.
While I agree with you about Stauffenberg's wording Meinuk, I know that I went through a stage, prior to my husband's transplant where I was more or less trying to convince myself that it would be better for him to opt for dialysis. And at that point, he hadn't even been on dialysis yet. Once he was on dialysis (in-center hemo), I had no doubt that the best option would be a transplant. Now that he has a transplant, and all is going well, it's hard for me to imagine him going back to dialysis, although I realize that it is his safety net for the future. And, I am encouraged when I read about how well IHD folks do on nx stage because that could be an option for my husband in the future.
It was never an issue for my husband. He wanted a transplant and never really thought twice because his job involves a lot of travel. He is not ready to give up his career. It was the same for his dad, who did home hemo for something like 5 years. He wanted his freedom to travel and wanted to be healthy enough to run (he was always very athletic). Of my husband's two brother's (both have PKD and failing kidneys), one wants a transplant and the other isn't sure what will be best for him.
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Cat Ears - you are so right about people saying stuff about there being more accidents etc at holidays. That creeps me out too.. it's like I *want* some poor person to die so I can get an organ... which is the selfish view... and while yes that's what I *need* to happen - I don't want someone to needlessly die in some accident or from some random happening like a brain tumour or heart attack or something. I hate that split second thought I have when I hear about some kind of accident with multiple injuries/deaths "Will there be an organ?" because that's a horrible thing to think. Plus I don't think many transplants come of road trauma victims - the way bodies tend to get mangled I doubt many organs would be in a suitable state for harvesting let alone the whole issue of getting family permission and so on...
very creepy for sure!
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Pelegia,
I need to point out that you were not pretending, you were weighing your options, considering hemo versus transplant. And you chose to support your husband's transplant. I have no problem with whatever therapy someone chooses. I want people to be healthy and happy by any means necessary. My problem in in the constant belittling and competition between therapies. THEY ARE NOT COMPETING THERAPIES people. No one wins in this fight, ultimately, we all lose.
How silly that in a simple declarative thread about one woman's choice, it became a "which is better - and let me defend my point thread". Yes, I am just as guilty, but hopefully I've learned that sometimes you should just let things be.
It seems that deep in each persons psyche is the need to defend their choice. No defense is needed. The pros and cons are out there for people to educate themselves and choose (for those lucky enough to be able to choose)
I'm saying drop the agendas and encourage everything - whether you have been transplanted or if you are on hemo or PD, you are still using modern medicine to live through each day. We see the pros and cons in each story, there is nothing gained by taking sides.
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meinuk...and I thought I was the only one using the term "dialysis zombie"....anyhow.......The FIRST day I was in training I asked """Why In The World Was NxStage Info not given to me as an initial choice either here or in ND?"" Well ND is not certified as not enough people interested...THEY DON'T KNOW....and in NC I was told quietly mind you...."we don't want everyone on it"..........to me this sounds like the initial lottery who lives or dies dialysis from years ago and that is not fair to ANYONE. That leads me to believe there are probably people on in center dialysis in the same building I'm training in that have never heard of NXStage. Shame on all.
By the way stauff...please please give me a billion dollars and watch me invest it and use it to fund kidney research and help...........that was something normally uttered by a really ignorant individual, which makes me sad as I have read some brilliant stuff that you have posted.
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Of course the poster was not 'pretending' about what was wanted. For those who understand the English language, 'pretending' that something is a good reason when it is not does NOT refer to the speaker pretending something in a psychological sense, but proposing something which, in the logical sense, is not accurate -- i.e., which is a 'pretense' of what is true.
The very latest data on improvements in dialysis treatment show that the best form of dialysis is short daily hemodialysis, which has been found to produce results equal to those found in cadaver transplants. However, this form of dialysis does not address the problem that 15% of dialysis patients eventually die from lack of vascular access for dialysis, but instead makes it worse by overusing the vasculature. Also, the elevated rates of cancer and toxic cytokine release in dialysis patients are a function of the amount of time spent on the machine, and short daily dialysis is not an answer to these issues. Further, since the half-life of cadaver transplants is about 20 years, while that for living donor transplants is 30 years, short daily dialysis remains far behind what transplant can achieve. Finally, on short daily dialysis the crippling of the patient's lifestyle and freedom is intensified by the fact that the treatment interferes with life every single day forever, while a transplant recipient can live like a normal person, apart from swallowing a few pills twice a day.
It is also sad but true that since most transplant centers only use brain dead persons for organ harvesting, traffic accident victims are a major source of kidneys for transplant, along with stroke victims. In fact the number of cadaver donor organs has been declining over the last few years in the developed world solely because the traffic accident death rate has declined due to safer cars and other safety measures!
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For the most part dialysis treatment is the type that you choose to do (unless PD does not work anymore). As I've posted in other threads it is an individual choice and people have different reasons for their choice. My hubby does everything now that he did before he started dialysis 11 years ago. more probably!! I really don't like when people try to push there beliefs on other people by saying that only one type of treatment is the best. Hubby had a really bad experience on Pd but I would never discourage anyone from doing PD. I would however tell them that it doidn't work for hubby but for some people it works really well. I started off trying to convince hubby to have a transplant. I had all the tests done to donate one to him and he did not want to have the surgery. I no longer try to influence him one way or the other it has to be his choice. How would I fel f he had a transplant because of me pushing him and things didn't work out. Maybe when hemo is not working well fr him at some point he may consider it but now it is not even an issue for him. With nocturnal home hemo he has a way better quality of life than when he was in center (and he had a good quality then). I agree people are not informed of all their choices when it comes to dialysis. Nurses and people who work in the dialysis field are not always well informed. last year we had to meet with a lady at our bank. While we were waiting for her we were talking to a friend who works at the bank about hubby's dialysis and how he was doing. he was telling the fried about nocturnal dialysis that he was on. Duting the conversation the lady that we were supposed to be meeting with came out of her office and overheard part of the conversation. When we went in the office she started asking us about dialysis and she was almost in tears when she told us her husband soon had to start dialysis. The only types of dialysis the neph had mentioned to them was PD, in center and transplant. She knew nothing about the nocturnal program. We gave her the names and numbers of people to contact . She asked one of the nurses at the dialysis unit about getting into the program for nocturnal and she told her that someone would have to die for her husband to be able to be trained. That was totally wrong. What that nurse was talking about was him going in center for regular hemo . The unit was full. Nocturnal training is done at another center. :banghead; Wish people would give out the right info. I think everyone should be informed of all there choices up front. We had to fight to even find out the info for having home hemo.
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For those who understand the English language, 'pretending' that something is a good reason when it is not does NOT refer to the speaker pretending something in a psychological sense, but proposing something which, in the logical sense, is not accurate -- i.e., which is a 'pretense' of what is true.
Condescending point made Henry. It is great to have you around - it illuminates the fact that all of us plebes are so... uneducated. Your command and use of the english language is only second to your pompous attitude. (and I know attitude, I see it in myself every day) If only I had read more in school, I wouldn't be such a mental midget standing next to you.
But you know what, I'm ok with that, I wish you the best with your transplant and your various medical maladies, your voice adds depth to this tapestry of IHD.
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Stauffenberg may I suggest that you do some research on nocturnal home hemo where dialysis is done at least 5 nights a week for a long period ( 7 - 8 hrs). As for access people doing nocturnal usually use buttonholes which are supposed to make the a/v fistula last longer. Supposed to be the cadallac of dialysis treatments!!!
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Gee, like everyone else here (except one) has basically said, WHY THE HELL ARE WE FIGHTING ABOUT THIS? All forms of treatment have their pros and cons. Aren't we all supposed to be friends here? Even though I'm not trying for a transplant now, I congradulate every one who gets one, and I look forward to hearing/reading about more. It may be something in my future, but just not now. sorry about any misspellings.I'm trying to type with a broken wrist.
adam
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I like this thread. It makes me think. My daughter did hemo and transplant, so I personally have witnessed the difference in her. Everyone is unique and I love that we have so many bright, passionate and interesting folks to share their ideas.
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I still love you, Meinuk. You express yourself very well and I'm in total agreement. Life is too short to sit around worrying about statistics and probability.
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This has been an interesting thread. It seems that I would prefer a transplant but I am not sure how much of that is actually my decision or how much of that has been influence. My neph has told me all along that because of my age, he would prefer me to have a transplant versus dialysis. He has said how dialysis is so life changing. I respect his opinion, and obviously I have never been through anything like this before, so I tend to lean on what he thinks. My only issue is now that I am at 9%, I feel ok, but I have no freaking energy. If I do anything that is physical I need to sleep for a couple of days. I have already had a fistula put in but he doesn't mention a timeline on when we might want to start dialysis. When you ask, he says well, it really depends on how you feel. Well, that is fine, but at what point do I say well, I guess it is time. Again, I feel ok but it would be nice to have some energy again. Of course, who is to say that a transplant will fix everything? I sure don't know.
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Interesting little discussion.
8)
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This discussion just points out one of the wonderful things about IHD - we are family inspite of our differences. And differences we do have!! Okarol, I have always shied away from expressing my views against a transplant exactly because of the difference I saw the transplant made to Jenna. We were with you guys all the way from before the transplant and I know that it changed her life.
It is great that we can be free to express our varying opinions. And I don't think anyone is 'right', nor is anyone 'wrong' (except for me of course: I'm always right! ;D)
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:flower; I, of course, am for transplantation. I am 36 years old with a 14 year old step daughter and 3 nephews who are basically mine ranging in age from 6 -16. I just want to see them all grow up and have families. I was pretty sure I wasn't going to make it that long on dialysis. Tomorrow is 12 weeks post tx from a live donor, my hero. I have been off of dialysis for 12 whole weeks and it has been great!!! Yes, I do have alot of medicine to take... and no, they are not at all pleasant.... I do fear rejection..... I am scared that I might get an infection......but, it is better than dialysis.
With this said... I totally respect those who opt to not to get a transplant. It is your life and your choice.... only YOU know what is best for you. I appreciate your opinions and feelings. I wish the best for everyone :flower;
Oh... and on a side note... negativity sucks! :thumbdown;
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This has been a really interesting thread but at the end of the day, the decision is YOUR decision. There are pros and cons to all treatments and we all choose what we believe is best for us. Personally, I don't want a transplant but then again I haven't started dialysis yet so I might well change my mind. If I do, then that is fine. Originally I wasn't going to have a transplant or dialysis and again that was a decision I made. It is your perogative to change your mind whether male or female to make whatever decision at whatever time to treat yourself in exactly the manner you choose. You don't need to explain that decision to anyone. Your way is not the right way or the wrong way but the only way for you at the time. There is no perfect solution to renal failure and we are lucky enough to have choices. It really is your lifestyle choice and yours alone. Nobody else could or should make that decision for you. Whichever way you go I jush wish everyone quality and quantity of life.
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Life is too short to sit around worrying about statistics and probability.
I been idle watching and reading this thread. There have been good "arguments" for, and, against transplantation. Bottom line is which ever treatment we choose, it only prolongs the end result, which is death. PD, hemo, home hemo, NXstage or transplant, like it or not, in all actuality we died when our kidneys failed, our "normal" lives lost when we decided on which form of treatment we chose. As of then, we became statistics, Ginnie pigs if you will, testing various forms of life support. Amen to all of us, we are the future of the millions of people who have yet to find out that their lives will change as they knew it, and enter the world of ESRF.
* My apologies if I have offended anyone, by using the word death*
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Debate on an issue as difficult as this one helps us to think more deeply about how science, medical ethics, role of personal choice, and more influences our lives. As far as I am concerned, these sorts of dialogues are healthy and useful.
This forum brings together people who might not otherwise have a chance to interact and debate. Sometimes there will be "cultural" clashes. Try to take the long view. Diversity makes us stronger.
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I must confess I don't understand the attitude which says that since the decision is ultimately each person's free choice, we somehow shouldn't argue forcefully for which treatment is objectively better! Some people might prefer living in the gutter as cocaine addicts while others would rather be missionary surgeons saving people's lives in Africa, but just because it is in the last analysis at matter of individual preference which you pick does not mean one is preferable.
I think the decisive point for preferring a transplant to dialysis is the following. Doctors are bound by the rule, 'primum non noscere,' a Latin translation of the Greek Hippocratic Oath, which states 'First, do no harm.' If you were to go to a surgeon with the desire to have him perform a harmful procedure on you, he would be ethically bound to refuse. However, with renal transplants, even though they cost about $260,000, take up scarce surgical team time and surgical facilities, involve a surgery with a 0.3% chance of death, and require toxic immunosuppressive drugs, any transplant surgeon in the world will perform a renal transplant for you if you meet the medical criteria and an organ is available. But if that weren't a medically superior alternative to dialysis, medical ethics would require him to refuse the transplant. Now since it is their entire life career to know what is beneficial and what is not in renal medicine, I have to assume that as long as renal transplant surgeons are performing transplants for people on dialysis, renal transplantation must be a superior alternative.
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It's interesting, Stauff, how much respect you accord to the folks in the medical establishment when their viewpoint is the same as yours. All the rest of the time, you seem to think that they are incompetent, bumbling fools. ???
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Stauff I don't think anyone is saying we should not discuss this topic (argue sometimes!!!) just that we should all respect each others opinions. I really like hearing people's opinions on the subject and their reasons for or against transplant. I know quite a few people who have had a transplant and they have done really well with it. Other's however have had an awful time with side effects and they have said on times that they wish they had never had the transplant. At some point hubby may decide a transplant is for him if not he will continue on dialysis and live life to the best of his ability. (and we do enjoy life and do all the things we want to do.) I'm not saying that transplant is not a better form of therapy for most people but it is a personal choice that each person has to make for themselves. Whatever the statistics are does not matter to a lot of people when they are making the decision. They have to choose what works for them and right now nocturnal home hemo is working perfectly for hubby. He doesn't need to take binders anymore. The only meds are vitamins, rocaltrol and a pariot for his belly (has nothing to do with dialysis). He has more energy than most people we know. In fact we were up at 7:30 this morning (after being hooked to dialysis all night) and poured 1/2 of the cement floor in our shed that he has built this summer!! I had a nap this afternoon - he didn't. :flower;
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I just thought of another good reason....I would lose my big disability check every month :Kit n Stik;
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I just thought of another good reason....I would lose my big disability check every month :Kit n Stik;
I think that's a big concern for many people, that and the idea that they will have no medical coverage 3 years post transplant. Ideally, with a successful transplant, you'd no longer be disabled, now healthy and ready to work, capable of full time employment that will provide income and insurance benefits. That's the gamble, I am praying it pays off!
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Ideally, with a successful transplant, you'd no longer be disabled, now healthy and ready to work, capable of full time employment that will provide income and insurance benefits. That's the gamble, I am praying it pays off!
Just the facts:
Currently, 83% of transplanted patients will never return to work.
Clinical Transplantation
10 Jun 2003
The impact of patient education and psychosocial supports on return to normalcy 36 months post-kidney transplant
http://www3.interscience.wiley.com/journal/118886210/abstract?CRETRY=1&SRETRY=0
Hopefully, that will change in time..
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I'm glad flip brought that up because that is a big concern for me as well. I have some other medical issues that have nothing to do with kidney failure (eye problems) that made it darn near impossible for me to get a job before I even had kidney issues. So for me, even withe a perfectly functioning transplant, the odds of me returning to work would still be pretty low. People, especially potential employers, see "eye problems" and they immediately assume that I'm totally blind. My vision isn't perfect and it never has been, but I most definitely am not totally blind. I hate feeling like I'm "mooching" off of Social Security, Medicare and Medicaid, but the fact is, I could not live without them.
Adam
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I'm in the same boat Adam. I did have a good job, but I got in with the agency when I was 24. Now I'm 47. There is no way I could get a good job with benefits now. I told my Nephrologist that if he gets me a kidney he better find something else wrong with me to keep me on disability. I hate feeling that way also. It is a matter of survival.
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Len's is in the same position with Social Security and Veterans Benefits. Has us scared to death. We are just sitting here waiting for them to cut off his benefits. Didn't think of that when we got the middle of the night call. :banghead;
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As for the low rate of return to work after a transplant, it is worth factoring the age of patients into the equation, since most of those with renal failure are already older than average, and after spending many years waiting for a transplant are even older, so they may be outside normal working age. Also, a frequently noted problem is that after people have been out of their careers for the 5 to 8 years it takes them to go from endstage renal disease through dialysis to transplant and post-operative recovery, they have been 'hors de combat' for so long they cannot break into their field again.
Contrast this with the data showing that of those patients of working age, only 30% actually do work while on dialysis.
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At my last neph appointment, my neph made a comment that I'm still pondering..... "Since you're going to need a transplant someday...." It came across like I wouldn't want to consider *not* getting a transplant and that it would be as easy as running to Walmart and picking out the right size and color to match my shoes. I don't know yet what I'll want with the time comes. I used to be adamently against a transplant because of the meds. I might be more interested now if I can get on a non-prednisone protocol, but it also depends on whether I'll be able to pay for the medications if there is still only a 3-year medicare limit on them, or if I'll be able to work to have insurance benefits that cover them. I appreciate this thread!
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When my kidneys failed at age 24 I could see nothing but the road out of there and the transplant road was my only choice. I could NOT believe my friend Pam didn't want one. She has now been on dialysis for 20+ years. I would not trade my 17 wonderful FREEDOM years with my transplant for anything. But, I know more now and I just am tired. It is hard work and takes a lot of energy to make a transplant work. All the lab visits, the worry when your creatinine goes up 1 point, the drugs and ordering schedule, the adjustment of drugs and on and on.
I know I sound confusing. I am all for transplants but I don't want another one. ??? Maybe I need to talk to Dr. Phil?
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I know I sound confusing. I am all for transplants but I don't want another one.
You don't sound confusing at all, you sound honest. And that's what this particular thread is all about.
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I'm also in a different place in life than I was when I received my first transplant. Then I was married and had my parents and his parents support. Now I have none of them. I do have other people, but not many and none as close. So, I realize that it would be all on me.
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Thank you all so much for your input into this thread. I have enjoyed this. BTW...at NxS training yesterday I was told that if I get a ...again with the transplant....that the American Kidney Foun or Assoc will help me pay for meds and insurance premiums...are any of you with tx seeing this or getting this ..help..???
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Thank you all so much for your input into this thread. I have enjoyed this. BTW...at NxS training yesterday I was told that if I get a ...again with the transplant....that the American Kidney Foun or Assoc will help me pay for meds and insurance premiums...are any of you with tx seeing this or getting this ..help..???
There's more info here: How to pay for life-long immunosuppressants http://ihatedialysis.com/forum/index.php?topic=4555.0
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When my kidneys failed at age 24 I could see nothing but the road out of there and the transplant road was my only choice. I could NOT believe my friend Pam didn't want one. She has now been on dialysis for 20+ years. I would not trade my 17 wonderful FREEDOM years with my transplant for anything. But, I know more now and I just am tired. It is hard work and takes a lot of energy to make a transplant work. All the lab visits, the worry when your creatinine goes up 1 point, the drugs and ordering schedule, the adjustment of drugs and on and on.
I know I sound confusing. I am all for transplants but I don't want another one. ??? Maybe I need to talk to Dr. Phil?
Rerun... apprieciate your input and story. It's interesting and I am so glad your transplant has lasted 17 years. that's amazing!!!!! :)
Just one small thought/comment on what you've written - and please understand I do not mean this as any kind of criticism of what you wrote or that I disagree (and since I have not had one yet I can't REALLY know what it's like) but...
Yes you have heaps of lab visits, and drug changes and so on.. but it's similar on dialysis. I mean OK the labs are done by my unit they take the blood from the machine when I am there, but it's still bloods, and medication is changed from time to time. I mean if you ask me it's probably not that much more complicated in transplant land as it is to dialysis. About the only thing I can think of off the top of my head is taking those immunosuppressant drugs at the proper times and not missing them (as opposed to binders which, well, you can get away with.. as an example).
You know though I *personally* (as in, just me, not anyone else) feel the freedom, extra energy etc would hopefully be worth all that.
But that's just me.
Maybe I will change my mind if/when I am in transplant lamd.
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The lab draws became a moment of life and death for me. You get to a point of only going twice a year. But two times a year my HEART would stop until I would hear back from the Dr. Office what my creatinine was. If it was 1.9 ........ Life was good for another six months.
Probably how a person feels after beating cancer and then going in for a yearly check up.
I had too much to lose. I had a great job, lived in paradise and could travel anywhere in the world. I knew I would lose all that if my transplant failed; which eventually it did. And I'm back in Spokane on disability and dialysis. >:(
I say GO FOR IT at least once RichardMel! It is a wonderful thing and I wouldn't trade those 17 years for anything.
I think I'm afraid of climbing that mountain again.... getting a job with benefits! (for one)
If they could have just given me a new kidney right away, but to lose everything and start over is too exhausting to think about. If I could have purchased a kidney right when I was losing one.... I would not be on dialysis right now. I'd still have my job and living in Sacramento. So there Hemodoc!
:waving;
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This thread has me really conflicted. I have a lot of history of cancer in my family, and am now scared to get a transplant, but I dont like dialysis, but I know about the horrible side effects of the drugs post tx. I'm younger though so maybe I should go for it, and at least try?
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I entirely agree with you, RichardMEL. While there are extremely RARE medical appointments and labs to be done after you have had a functioning renal graft for a while, essentially with a transplant you live exactly the same life as a normal person. I could live with someone for a year without them ever being able to guess I had had a kidney transplant, but I certainly could not have said that while I was on dialysis. I remember in the period shortly after the transplant being profoundly disrupted by the uncomfortable feeling that I was failing to meet some important obligation by not having to waste every second day of my life on dialysis and then waste every day in between recovering from dialysis. The sudden ocean of free time that pours into your life is an embarrassment of riches you hardly remember how to use. Suddenly it dawns on you how healthy people can get so much done in a week. Suddenly your planning unit for life projects expands from one day at a time to years at a time, so it becomes possible once again to construct a coherent plan of existence, rather than just lurch from one medical appointment to the next. If on a given afternoon at 3 P.M. the thought enters your head of just buying a plane ticket to Aruba and taking off, you can do it, because now the world is your oyster, rather than just existing like a hamster on a treadmill, trapped in the narrow interstices left open between three four-hour treatments a week and all the ancillary time-consumption that goes with them. The difference between dialysis and transplant can be so stunning I can't believe that the issue of which is preferable can actually be debated!
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Karen547, one important thing people don't realize in assessing the options of transplant or dialysis is that dialysis itself carries a greatly increased cancer risk, so it is not as if your increased risk of cancer could be a deciding factor in declining to have a transplant. (If you are diabetic, the paradoxical effect is that the immunosuppressives actually do not make your chance of cancer any higher.) The great clarifying point is that the toxic effects of dialysis and the toxic effects of immunosuppressive drugs are all rolled into two simple numbers which allow you to compare their relative magnitudes, and that is the life expectancy with each treatment modality. Although results vary depending on your age and co-morbidities, with a new kidney from a cadaver donor you will live very much longer than with most dialysis modalities, and with a live donor you will live even longer than that. Now for people who are suicidal and would like to die as soon as possible, dialysis is definitely preferable, but I suspect they are in the minority.
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I agree Stauff and if I could have received another kidney as they took the old one out that would have been great. We need to fix the system of turn around time for a new kidney so you don't lose your life style while waiting.
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In the US you have to be cancer free for 5 years before you could be listed on the Transplant list. I don't make the rules.
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My husband had cancer and its only been two years...all of the transplant places here have said 5 years -except for the one in Gainseville Fl- he is doing his work-up to be approved. They are also the only ones who looked at his medical records in there entirety (as far as the cancer goes) so he is happy- but I am very apprehensive. I am afraid he is going to get more cancer, much quicker. I have read so much I am afraid this is foolish.....he couters my arguement with,' I won't get on the list if they think its not safe' That may be true, but so much medicine is guess-work.
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After reading stauffenberg's post,I did some looking on line and found the following to be interesting:
http://www.uptodate.com/patients/content/topic.do?topicKey=~ytB_wv.M.1I/M3h
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Thanks dkerr. I read through the article and noticed the Hep B and C...well I had Hep A, in 1992 and last year they found Hep C in my blood workup and did several after to make sure and yes it was there so guess that's another reason for me and CA in my family history.
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Same here, G-Ma. All of a sudden HCV showed up in my labs. It had to have come from the center. My attorney is in charge of it now.
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Mine probably from one of those many blood tx.
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They basically ignored mine and said hopefully I would develope antibodies and it would go away. No treatment of any kind.
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Wow, what a great discussion. Being on vacation I missed this discussion until today. Yes, you can travel on dialysis. My car has put on quite a few miles since we left California a month ago. I am in a hotel in Vermont tonight reading IHD.
G-Ma, I have chosen for multiple reasons to forgo the transplant list at present. The straw that broke the camel's back for me was when I was diagnosed with melanoma from the dermatology evaluation that I set up for screening. Skin cancers occur in a large number of patients post transplant that can be deadly. 9-20% of renal transplant patients will develop one form or another of cancer depending on how man years of follow up is counted. It is a significant number. Perhaps if renal transplant meds improve with a lower cancer risk in the future, I might make a different decision. For now, I won't accept a living donation to not harm the donor, and I don't want a cadaveric donation due to the meds.
In any case, I just read through these posts and it has been some great commentary. It is an individual choice, but the home daily dialysis option is not utilized as well as it needs to be as it is in so many other nations. Its time has come
Peter
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I totally disagree with your comment stauff "Now for people who are suicidal and would like to die as soon as possible, dialysis is definitely preferable, but I suspect they are in the minority." I don't think that people who choose dialysis over transplant are suicidal - they have their reasons and a lot of people have stated their reasons here. Hubby has had 11 years on dialysis 8 good years since starting hemo. He has chosen not to have a transplant and I really think it is the best choice for him.. Nephs even agree with him that if everything is working well and he's happy why try to fix it!!
I don't know about other people but I really don't like the comments you make about people who choose dialysis over transplant. For some people they have no choice transplant is not an option!!! I don't like being told that people on dialysis have a "hideou life" (that was in another thread I think)or are "suicidal". We have done our research Stauff (probably just as much as you have) and for right now this is hubby's best choice. We would have to go to another province for a transplant and have to stay there for maybe a month. It is not only cancer with the drugs but the other side effects as well!!
This can be discussed rationally without the comments about suicidal or hideous lives. We have neither of those.
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Nice post, Peter. We are basically in the same boat. I won't be considered cancer free for another 4 years (skin cancer) and I'm now HCV positive. For me dialysis is about like Aunt Bee's pickles....gotta learn to love it. I agree that home hemo is the best solution, maybe even better than a transplant in many respects. I know this is a piss poor analogy but dialysis machines don't usually fail.
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flip if the machine you are using fails there is always another one!!!
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Hey Rerun - I totally didn't consider that "life and death" situation you describe... but I actually do understand that feeling and issue because prior to starting dialysis I had that feeling exactly every 3 months or so when I did labs and then went to see the specialist - dreading the result - and dreading if the doc would say it was time or not... and profound relief when he'd say "ok you need to start soon but we'll keep things the way they are now" - so you make a very good point with that.
Still... I would undergo that if it meant the rest of the time I was freeeeee!!
I like the sound of Aruba ... do lots of girls wear bikinis there? >:D
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I don't know about other people but I really don't like the comments you make about people who choose dialysis over transplant. For some people they have no choice transplant is not an option!!! I don't like being told that people on dialysis have a "hideou life" (that was in another thread I think)or are "suicidal". We have done our research Stauff (probably just as much as you have) and for right now this is hubby's best choice. We would have to go to another province for a transplant and have to stay there for maybe a month. It is not only cancer with the drugs but the other side effects as well!!
This can be discussed rationally without the comments about suicidal or hideous lives. We have neither of those.
It may not apply to you.....
He is entitled to think whatever he likes about wether its a hideous life or not, or if its suicidal or not- you may not agree with him, you do not have to agree with him. If his comments offend you- skip over them- Epoman welcomed all opinions, not just the 'politically correct ones that don't ruffle anyones feathers', I like reading his posts.
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I do respect other people's opinions and I do like reading other people's posts but I would never make comments that put down other peoples decisions about their types of treatments. This started off as a thread to discuss people's reasons for choosing to not have a transplant. Shouldn't turn into a a thread telling people they should have a transplant. That is an individual choice and everybody should respect each others choice whether it be transplant, pd, hemo or no treatment at all!!!
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Hi, I'll just add my thoughts to the discussion. I'm 58 years old, been on CAPD for 1 year, no problems. (my veins are too small for hemo, wouldn't want to do that anyway, needles freak me out! ) anyway I got the workup at the Mayo Clinic last year to be put on the transplant list, but all the info I got there scared me silly. dialysis works fine for me, I get 100% disability and I enjoy my free time around the exchanges. I'm retired from American Airlines so I fly free (when there's an empty seat!) I go to PA nearly once a month to visit daugher and grandson, just got back from Vegas last week, (Cher was awsome!) I consider my life good at this point. ( a date would be nice but am realistic that is not going to happen)
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I go to PA nearly once a month to visit daugher and grandson
Im curious, where in PA do you come to visit?
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At 26 I went on dialysis. I was too scared to have a trx when informed of the risks but I did home hemo for 5 years and did well. I went on the list after 4 years even though I was still nervous about side effects. I was called for a cadaver trx at 31 and although I was petrified, I had it and it worked really well for over 23 years. I take care of myself as best I can, eat sensibly, pay attention to medical maintenance and go to a gym. I see a dermatologist regularly to check for skin growths and have them removed on a regular basis. My mother died at 46 of melanoma so I avoid the sun, use sunscreen every day and watch my skin very carefully. I'm hoping to have a living donor kidney but I certainly don't want to put anyone at risk for anything adverse and my potential donors and I have discussed this. They are more keen to donate than I am to receive. I am fully aware of the risks and the side effects of trx but will go for it anyway. When younger I took many calculated risks that enhanced my life and was constantly warned about the "dangers" of some of my choices. (Mostly to do with traveling to places that others deemed dangerous). Life is risky and none of us get out alive. That's a certainty. I know the risks, I'll assume them and if I die, I'm OK with that. Should my donor die, or be harmed I would be devastated and would struggle for the rest of my life to come to terms with that.
I cannot imagine a world in which we would all make the same choices about our lives and that goes for ESRD treatment as well. We need options so that our choices can be individualized ones that work best for each of us. We all need to advocate as a community for more adequate dialysis, more home programs, more organ donation,(a huge change since last I was transplanted is that they will now do altruistic or non-related donor transplants) improved outcomes, public awareness and so on. I really have no idea what would be the BEST choice for anyone else. I find it hard enough to think about about and decide what is best for me. Changing one's mind back and forth on this issue is also an option.
I am scared about the upcoming steps for me in this journey but I am well-acquainted with fear. Fear energizes me to learn more, to ask questions, to push to understand the answers. If I am wrong about my decision it will be my mistake and I'll have to live with it. Or die with it.
I completely understand why someone would choose NOT to have a transplant. I hate the fact that my body requires dialysis but dialysis itself is not ,for me, an object of hatred. It's a life-sustaining tool that I'm glad is available to me.
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Dear monrein,
What an excellent personal testimony on your experiences, some positive, some negative. My prayers are with you and your potential donors that all will go well with you once again. I agree with all of your sentiments and yes, it is time for optimal dialysis here in America but it is not the right choice for all patients. With all matters done correctly, you have an excellent chance of a good outcome for both of you.
May God bless,
Peter
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I hate the fact that my body requires dialysis but dialysis itself is not ,for me, an object of hatred. It's a life-sustaining tool that I'm glad is available to me.
Well said. Thank you.
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Now remember some of us are stuck on dialysis for ever or until our lives run out. There is no other option for me. Sometimes we act like there is always a choice to get a transplant and often there is not. This discussion is kind of moot int hat case.
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ditto, Kit
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you are so right
and how is nighty, nighty D?
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Very well said, monrein. :2thumbsup;
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transplant stats from UNOS
First of all, what does UNOS stand for? What do all the abbreviations stand for in the chart?
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Kit, flip and others in that situation - I feel the most for you. Yes, I know some who can't have the option of a transplant don't want one and are happy on dialysis... and I, at least, admire those people... for those who would want one and cannot... that is a tragedy in my mind. I look around my unit sometimes at a lot of the folks in there who aren't going to get that option (mostly older, but some younger) and I really feel for them because this (dialysis) is likely all they will know. Sometimes the thought of a successful transplant (as a goal to look forward to) is all that keeps me going. Yes, I know when (!) I get one, it could fail soon, reject or not take at all... but I prefer to think positively that I will at least get a few years out of it, and potentially much more.. and those years I sure intend to make the most of that relative freedom from dialysis needles, restrictions and the like... and for those that can't.. well.. like I said my hat really goes off to you guys because I'm not sure how I would handle that outlook at my age etc. I know everyone is different of course but that's just how I feel.
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Richardmel I hope you get your transplant and that it works well for you for years and years. :2thumbsup; It is different I think when it is your decision not to have a transplant than when someone tells you a transplant is not an option. Maybe one day hubby will decide he wants to go for a transplant. It is just another option for him. He is doing so well though that even nephs agree with him that why fix something that is not broken. Plus nocturnal hemo has given him so much of his life back. Not the same at all as in center.
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I definitely agree and I totally support anyone who can and does make the decision for themselves. I would never tell someone THEIR decision about THEIR life is wrong, or bad or something.... even if sometimes it can be heartbreaking to others (eg: Anna & Randy). One of the few freedoms EVERYONE has in life should be to decide things like this for themselves. I guess my comments were more an extension of the frustration and unfairness of a situation where that decision is taken from you and you lose another aspect of control over your own life.
I suppose in some respects we (as a community) are lucky to have a number of treatment options to cover different choices - PD, in centre hemo, home hemo, nocturnal and even as in the last Kidney Talk podcast I heard - in center nocturan (which sounds great to me) and of course transplantation for some. And for others, no dialysis (as a choice).
I can't do home hemo because I'm by myself with only Celeste to help... and while the pictures of a cat holding needles ready to stick, and resetting an alarm would no doubt be hilarious - somehow I don't quite think so!! :) So I'm sort of stuck (no pun!) with in cener hemo, which is why a transplant is an option I really am wanting.
Thank you for your support re the transplant... My gosh I need it soon.. I have so many IHD women to visit... Anna, Deanne, Karen, Claudia......
:shy;
>:D
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transplant stats from UNOS
First of all, what does UNOS stand for? What do all the abbreviations stand for in the chart?
this question is with regard to the chart I posted earlier in the thread at http://ihatedialysis.com/forum/index.php?topic=9527.msg160742#msg160742
"UNOS" is the United Network for Organ Sharing
"non-ECD" is non extended criteria donor (donor did not have high blood pressure or some other risk factor)
"Tx" is abbreviation for "transplant"
"N" is the number of individuals for whom they have information, or the number of individuals in a specific category identified by the left most column and the headers across the top
"%" is the percent of individuals for categories
"Std. Err." is the "standard error" I'd have to track down the source material to find out how they calculated it, but generally a small percent error means the numbers used in a calculation don't vary much, or alternatively that the sample size is very large. Both make it easier to have confidence that a smaller sample from a larger population is representative of the population.
So, if you follow through the rows and column headings, you will find that the average graft survival is 72.8% for someone who received a transplant when they were between the ages of 35 and 49 and received their kidney from a deceased donor (non-ECD) 5 years previous.
That means that out of every 100 people in this category, on average, 72 people (and that poor 8/10ths of a person) will have a functional kidney at the five year anniversary.
The highest graft survival after 5 years is for Asians (78.2%), and the lowest graft survival after five years is 58.8% for folks who received a transplant when they were 65 or older. Or turn that around to 41.2% of people over 65 who had a kidney transplant had functional kidneys after 5 years.
If you link to the UNOS site http://www.unos.org there is more information to be found. Start your exploration by clicking on "Patient Survival Rates."
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Pelagia,
Thank you so much for taking the time to send me the UNOS website!
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RichardMel....Celeste is really not so far off........a few weeks ago there was an article in our paper about some organization (which I promptly forgot but now seems could do) that trains small monkeys to operate microwaves, fetch, tote, comb hair, operate ranges and many things for paralized people and they are doing it very well. Now, I'm thinking..hmmm...no one to talk back....don't have to pay...unless with fruit??...hmmm...
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that trains small monkeys to operate microwaves, fetch, tote, comb hair, operate ranges and many things for paralized people and they are doing it very well. Now, I'm thinking..hmmm...no one to talk back....don't have to pay...unless with fruit??...hmmm...
Sheesh, I hope my director at the clinic don't read this!! :rofl;
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When I was a kid, I bought a squirrel monkey from an advertisement in Boy's Life magazine.
8)
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oh oh...I hear a story....share....are they really smelly??? I have heard..... :o
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I remember those days, Zach. One of my best friends bought one too. He was a nasty little critter.
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lol@trained monkeys... all I can think of is "Family Guy" where poor Chris has an EVIL monkey living in his closet....
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This is really off topic, but ...
Here's Jeremiah:
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This is really off topic, but ...
Here's Jeremiah:
I thought Jeremiah was a bull frog.
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He was a good friend of mine.......
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Didn't understand a single word he said
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But he always had some mighty fine wine.
Back on topic anyone??
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Oh sure, now that this song is in my head........ :Kit n Stik;
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where does the fluid go after it is drained or sucked out of out bodies----
do they have a drain pipe or something
:bandance; for the monkey
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;musicalnote; Joy to the world ;musicalnote;
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all the boys and girls ----
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Three Dog Night was one of my favorite groups.