I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: beep on January 18, 2017, 12:04:37 PM
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ok i'm on dialysis 3 times a week @ 4.5 hrs a session .After 3 yrs i've accepted this as my weekly routine.fortuanately the nurses are a great bunch. ok now i dont have much of a social life actially Dialysis is the hilite of my week?? i dont/cant work.n as i said dont have a life (also on my own 24/7) tho there is family at the end of a phone....
if i was to miss or stop fully a session what would happen...yes i know u would die but btween stopping n dying what happens do u go all giddy fall over without warning go to sleep if u can n ot wake up
has anyone missed a handful of sessions did u collapse n got taken to hospital
I'm still passing urine but really its not worth talking bout
I am having trouble reaching my IBW n i just keep putting weight on n i swear to the nursee "but im not drinking much at all there has been talk of an xtra session diring the week..my dialysing seems to b ok..just I cant contrll my fluid intake
all my bloods potassium creatinum are all in the acceptable range
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Never mind if you stop if you have large fluid amounts removed every session sooner or later you will have a heart attack. Removal of excess fluid puts a strain on your heart within the last tree months two of the regulars died from a heart attack both had fluid retention problems. Even if you don't die the damage will effect the rest of your life. Fluid control is the most important facet of hd.
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as i said to dr what u want me to do stop drinking altogether
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as i said to dr what u want me to do stop drinking altogether
No beeb you don't have to stop drinking, just reduce the amount you drink. Drink small cups, but drink what you really enjoy. Take your meds with the food you eat, so you don't waste it on that.
When you're thirsty, have some mints (try sticking 10 in your mouth, it will make your saliva go into overdrive ;D
If you take super strong mints it will take you at least 20 minutes to recover, so repeat 3 times, than eat, and have a small drink.
The point is, you won't have time to drink.
Good luck, Cas
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Fluid control is the most important facet of hd.
This is one of the reasons I like the NxStage program. I rarely take off more than 2kg in a 3.5 hour run. I'm currently on the hose targeting 1.5L. Even conventional (Fresenius Baby K) at home reduces fluid overload if you think to ask your MD for an every other day protocol instead of 3x/week.
One of the built in (and, in my opinion, intentional) failings of the current dialysis treatment protocol is a failure to proactively notify patients when compromises in quality of care are made for cost reasons - the biggest one of these being the 3 day protocol with the dreaded 2 day gap.
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I have to admit it has been difficult switching rom PD to Hemo. The ice water that I freely drank on PD is no longer allowed. But I am still allowed a cup or three of pure ice. An ice cube does wonders for soothing a dry mouth and thirst.
Lifesavers Mints are also always within reach. I may have a dozen throughout my day.
I occasionally grab a half dozen cold grapes from the refrigerator, savor each one separately taking a long time to suck every drop of juice from each one before swallowing the pulp.
At weigh in this mornings treatment I thought I would be way over as I did succomb and took a few gulps from the milfk jug last night.
I was very surprised that I was only a HALF kilo over my weigh out Monday!
Never know how I did that!
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There are numerous ways to cut down fluid, when you want to drink cause your mouth is dry fill a spray bottle and spray it into your mouth, I use a squirt gun duting the summer. My personal favorite is frozen grapes as they defrost they help rehydrate your mouth. Also remember any thing you eat ithat contains water counts. The other thing that happens to me is pull off too much water and my digestive track stops and if I don't go I can gain several kilos between treatments. Good luck it's doable and I just read a paper on the Implantable Artificial Kidney projects there are several nearing the start of testing,several have already been tested as Wearable Artificial Kidneys. They took the implantable device and put it in a bag on a belt and the results have been good, people testing could drink whatever they wanted and eat whatever they wanted and the labs were great. Rumor is the first implant testing may be sometime this year.
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There are some very long threads on this topic which you might want to read, including this one:
http://ihatedialysis.com/forum/index.php?topic=15216.0
From what I've read dying from kidney failure is not an easy experience. I recommend giving the fluid control a chance.
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No beeb you don't have to stop drinking, just reduce the amount you drink. Drink small cups, but drink what you really enjoy. Take your meds with the food you eat, so you don't waste it on that.
When you're thirsty, have some mints (try sticking 10 in your mouth, it will make your saliva go into overdrive ;D
If you take super strong mints it will take you at least 20 minutes to recover, so repeat 3 times, than eat, and have a small drink.
The point is, you won't have time to drink.
Good luck, Cas
I keep a pint jar at my desk at work, which helps me keep track of, and limit my fluid intake. I sip it throughout the day (I work in a call center, so lots of talking!). For my situation, drinking 1.5 to 2 pints each day, plus a little with both morning & night meds, keeps my fluid intake in check. On really thirsty days, I'll fill my glass with ice and suck on icecubes/sip as they melt.
When I was in-center, there was a running joke between a couple of us about cranberry juice & vodka! One of the patients said he had always relaxed after work with a cold beer. Since starting dialysis and having to both reduce his fluid intake and his phosphorus, he would end his day with a little liquor instead.
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Try measuring out your fluid at the beginning of your day. That way you know you can only drink this much all day long, so you can ration it better. Try gum and mints to quench thirst. If you know you had a little too much fluid, try exercising and sweating some out.
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ok its all about fluid control.....but i did ask apart ftom dying what
do u xperience btween stopping HD n dying?
getting back to fluid control how do controll these well doers who dont underatand.....at a social do..the ones who conatantly pester u...do u wanna drink comw on drink up have annother drink.. watz wrong come on drink up....no matter hoe many times i say NO THANKS how do u handle thoae people???
as far as mints r concerned im a Diabetic.....Watch out sugar levela now thats an ohter story
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ok its all about fluid control.....but i did ask apart ftom dying what
do u xperience btween stopping HD n dying?
Did you actually read Iolaires link?
getting back to fluid control how do controll these well doers who don't understand.....at a social do..the ones who constantly pester u...do u wanna drink comw on drink up have annother drink.. watz wrong come on drink up....no matter hoe many times i say NO THANKS how do u handle thoae people???
as far as mints r concerned im a Diabetic.....Watch out sugar levela now thats an ohter story
Okay, mints is not a good idea than, we have to find another something you can stick in your mouth. Try sugar free chewing gum? Not too many, just keep it with one. The point is to get saliva in your mouth.
The spray with water from Michael M is also a good one.
BTW have you measured the cups you use? Do you know how much is in those?
And for those people who pester you to drink? Just ignore them. They'll never listen, are not actually interested, so just drink a sip or two and leave the rest. I have a FIL who still gives me a huge full cup of tea. I take two sips and leave the rest. After 22 yrs (I tried explaining twice) I can't be bothered with that. Rather drink my shot (30 ml) of Cointreau when I get home. (There must be something nice that you love to drink, even in a small amount? As a diabetic, alco messes up your sugar?)
NB I even brought a small cup to FIL so he could use that, but that was no good.
He also couldn't just fill His cup half, cos that was too much hassle.
Basically, it's up to you
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From what I've read dying from kidney failure is not an easy experience. I recommend giving the fluid control a chance.
There is a difference between dying onf renal failure because you decline dialysis when informed your kidneys are failing, but still have some residual - you can get sicker and sicker over a long period of time as the residual tapers off. It's quite another matter to be on hemo until you have zero residual/zero urinate, then stop. You get a much quicker kill in this case.
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The other need is to be very careful of salt intake. Salt is bad for two reasons, first it makes you thirsty so you want to drink more, second salt causes the body to retain water.
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Death due to stopping dialysis can look different in different people. A lot depends on co-morbids. Basically, when you stop dialysis you will start to feel like you did before you started; fatigue, weight gain, foggy headed, nausea, etc. You could die quickly from a heart attack from elevated potassium, or you could die very slowly. Some people go into a coma from the toxins in their systems and then peacefully pass. Some people get infections due to toxins and deal with sores and painful side effects of toxins. Some fluid overload and struggle to breathe, saying they feel like they are drowning. Some will vomit and have intractable diarrhea. I have seen both. I worked in hospice and as a hospital discharge planner before becoming a renal social worker. Unless you go into a coma, dying from dialysis is the pits. Really. It is painful, scary and confusing. If you are at the point where that is okay with you or you just have a terrible time on dialysis, I would work on fluid overload problem. I am just being real, not trying to scare you.
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Unless you go into a coma, dying from dialysis is the pits.
We can thank the papist lobbyists in MA for depriving ESRD patients who want to go peacefully of that option. Of course, home hemo patients have that option, but using it would be illegal and would therefore have to be done without proper medical/logistical support, would have to be done when loved ones had alibis (to protect them from persecution), and could not be done within two years of initiating any life insurance if one expected the family to collect.
I am on home hemo now, and having a great life - but I resent those who would interfere with my right to decide when to live and when to die. I've already told my team of my plans to discontinue dialsys. I've advised them my discontinue date will be shortly after my 85th birthday.
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True, Simon Dog. Some hospice agencies will let you filter toxins and not pull fluids if you want to go that way. But not all of them, and, like you said, the legal implications of things like life insurance need to be considered.
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I don't recommend dying from lack of dialysis. It's not fun. I came close once, when I was 12 years old. We didn't know I needed dialysis until I was close to death. I went into septic shock from the toxins. I couldn't move or speak voluntarily (I yawned a few times, so that was involuntary), but I could still see, hear, and understand all that was being said and done around me. It was terrifying, and it's not something I'd like to experience again.
As for fluid restriction, after 12 years, I've come up with a few tricks.
1. Measure. Everyone has a favorite mug or glass that they always use. Measure how much it holds so you know how much you are drinking each time you use it.
2. Keep track. My memory isn't the greatest and I have a hard time sometimes remember what day it is, let alone how much I've had to drink, so I write it down. I have a notebook dedicated specifically to keeping track of how much I drink. I try to keep it between 2-2.5 litres between treatments, and definitely less than 3 litres, because I know that I can only take off 3 without any nasty effects (cramping, low bp, passing out, etc).
3. Plan ahead. If you know you're going to be out somewhere, say out to dinner or whatever with friends, try to refrain from the morning coffee (or whatever a regular daily drink may be) that day, so that you can have a drink without worrying. If you have someone who keeping bothering you to have another, and refused to take "no, thank you" as an answer, be blunt. Tell them, "I'm fluid restricted for heath reasons, and I've had my limit." That tends to shut people up.
A lot of people have given their suggestions for what to do to keep from drinking. This is one of the things that I do. I splurged and bought myself a counter top ice maker. I ALWAYS have ice. I also have a sports bottle, one of the ones you have to suck on or squeeze to get anything out of. I know that, when filled with liquid, this particular bottle is supposed to hold 750mls. I filled it with ice, and let it melt so I could measure the water. It's about 300mls. Now that I know this, I can fill that bottle with ice, and I drink the water as it melts. It lasts me hours, and it's only 300mls. When you only are supposed to have 1000mls a day, 300mls is nothing, especially if it lasts you all afternoon.
This is all that I do. I have a 450ml iced cappuccino every night, and it's rare for me to go over 3kg, even on the weekends.
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Most every time I walk through the kitchen I reach into the freezer a grab a cube of ice. Not so bad.
It's when I fill my glass with ice and carry it around with me. I worry that I have too much, it does begin to add up.
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I know that not everyone has the option to do PD and that PD has an expiration date. But all these really intense dietary and fluid restrictions make me wonder why anyone would choose Hemo over PD.
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I have a house in the Adirondacks near a large lake one of the true joys in my life is on a hot summer day is to jump in and cool off. PD would stop me from doing that. Every ones life is different therefore everyone's choice of dialysis type would be different. There is no right or wrong choice only what fits the persons life and what does not fit. Different people different choice,
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i chose HD over PD cause at least ive got a chance to get out of home .With PD i'd b stuck at home alone,n would probably take short cts if there are any
another reason is that i dont liks the idea of carrying those boxes everywhere i go ( if i was travelling) if im at home i'd have to stop doing whatever im doing n hook up the bags 4 times a day
the main reason i chose H/D when i started H/D i had a line coming out of my chest for 8 mths n it annoyed the living daylights out of me ...n developed a virus.. so theres no way im going thru life with a pipe coming out of my tummy
getting back to the question i asked(if i stopped wat would happen) i've asked at my clinic n i keep getting the nurses saying back " why do ask that question" ?
aren't i allowed to know wat this disease can do to me ?
P.S. does anyone know of a forum such as this one re Diabetes i see there is a section discussing Disbetes in the forum but it is well an truly outdated by several years ?
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My PD cath was 'tunneled' upwards under my skin, deep enough I really had to push in to feel it. It came out midway between the center of my chest and my left nipple about even height wise even with my nipples. I never had a problem with the site, no infection. Three and a half years and finally had a peritoneal infection from Hell. After three months of antibiotics this infection kept coming back. Finally gave in figuring the cath itself was contaminated within. It came out and a Hemo cath stuck in going up and over my right clavicle and down into the vein near my heart. Little over a month on Hemo so far. Figure a couple more before I get another PD cath.
I did manual PD for a bit over a year. Had my Cycler maybe two and a half years. The Cycler was SOO much better than manuals. Set up the machine every evening, connect and go to bed. Get up in the morning, restart the drain to make sure it all came out, then poke the button to go on to the Last Fill with Ico for the all day carry. DONE.
The fluid and food restrictions on PD were almost non-existant. I could eat and drink almost as I pleased. Totally different from the very strict fluid and diet on Hemo.
I very HIGHLY recommend PD. For me, it just works. Labs were very good. Far better than what I have now on Hemo.
Seriously think about PD. Ask far more questions how it works for others. It is not for everyone, but for those it works, it works very well taking off the excess water and toxins daily.
I would guess those on Home Hemo also do very much better. But my needle-phobia, I would have to have a major mind set change to even think about using those needles.
I wish you well whatever method you chose.
Take Care,
Charlie B53
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I did PD right up until I couldn't do it anymore. When I was a kid, it was what I was started on. We didn't really know anything about dialysis, it was just what was done. I loved it, for a lot of reasons. A lot of things about PD have changed since I started on it back in 1991.
There were less restrictions on what you could do on PD back then. I was allowed to swim in the ocean, but not a pool. I just had to change my dressing as soon as I was done swimming. I was trained on the shower technique, and I never got any kind of infection as long as I or my mom did my dressings. Things changed when the nurses insisted on doing the dressings. When I asked about the shower technique when I was an adult, the nurse looked at me like I had two heads.
I liked PD because of it's flexibility. I could set my own schedule, or I could visit with my grandparents in Nova Scotia as long as I brought supplies to do manual exchanges. As a teenager, with the cycler, I could go to school during the day and dialyze at night. Nobody knew I was on dialysis.
I do better on HD than I did on PD, I know that. My weight is lower, I don't carry around as much fluid, and I have a little bit more energy. Still, if I was able to go back to PD, I probably would.
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I had better labs while on PD. I am learning to change diet to try to do better while on Hemo.
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getting back to the question i asked(if i stopped wat would happen) i've asked at my clinic n i keep getting the nurses saying back " why do ask that question" ?
aren't i allowed to know wat this disease can do to me ?
beep, did you have chance to read the link I posted?
http://ihatedialysis.com/forum/index.php?topic=15216.0
Your question has actually been asked a few times or articles on dying posted. I'd think reading over those old posts would give you some idea. I believe from what I've read its not an easy death. I'd think that looking into assisted suicide would result in a much easier decline.
http://ihatedialysis.com/forum/index.php?topic=28776.0
http://ihatedialysis.com/forum/index.php?topic=1113.0
http://ihatedialysis.com/forum/index.php?topic=31835.0
http://ihatedialysis.com/forum/index.php?topic=6985.0
http://ihatedialysis.com/forum/index.php?topic=27199.0
http://ihatedialysis.com/forum/index.php?topic=27093.0
http://ihatedialysis.com/forum/index.php?topic=32633.0
http://ihatedialysis.com/forum/index.php?topic=26709.0
sp mod Cas
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https://www.diabetesdaily.com/forum/
This looks to be updated several times a day and has good information. As to why nurses don't want to talk about happens when a person stops dialysis, it is often because it is so hard when a patient passes. You get used to seeing that person in his/her chair and it is so hard when that chair is empty. You become invested in the patients and know about their family and friends. You know about their pets which team they pull for, what they like to do, etc. Death isn't pleasant to think about for healthy people. Ask your social worker. He/she should have information on hospice and what it is like to die from renal disease. I can't imagine having to have dialysis three times a week in-center. I would be having the same thoughts you are. I would definitely talk with your social worker about how hard a time you have been having. There are resources available to help you through this, even if you decide to stop dialysis. Going at dialysis alone is hard; that is why forums like these are available. Don't do it alone. Ask for support from your dialysis team, other patients, and here.
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Hello Riki
Would you explain your shower technique when you were on PD
I am always trying to do the best for my alternate belly button and you may have a better routine
Thank you
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https://www.diabetesdaily.com/forum/
This looks to be updated several times a day and has good information. As to why nurses don't want to talk about happens when a person stops dialysis, it is often because it is so hard when a patient passes. You get used to seeing that person in his/her chair and it is so hard when that chair is empty. You become invested in the patients and know about their family and friends. You know about their pets which team they pull for, what they like to do, etc.
[off topic]
The home care room at my clinic is a large open space with a long worktable down the middle with a raised portion in the middle separating the two long sides. On this raised area are several flower vases, two with flowers in them and three with lids on them. The funny thing is, they look just like urns! I jokingly asked a nurse if they were former patients. She looked at me funny then looked at where I was pointing and said, "Oh my God, they do look like urns, don't they?" She gave me a little laugh but I think it unnerved her a bit.
[back on topic]
OldKritter: I started PD within the last 6 months and was told only to use an antibacterial soap and to use my fingers in a circular motion around my exit site, never the wash cloth. I use Dial Odor Armour mainly because it was on the list the center gave me. I also use a http://www.secureway.org/ necklace to keep my catheter protected while I shower. When I first showered I kept slinging my catheter around and slamming it into the shower door.
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When I was on PD I wore the PD belt in the shower to keep the tube from flopping around, and swapped if for a dry one when I was done. This also kept the PD belts washed.
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thanks iolaire for that link i'll check it out ..please dont think im looking down that path.just b nice wat to xpect
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And even if you were thinking of going down that path, beep, that would be okay. It is your illness and 70 years ago it was a death sentence. No one should have to do dialysis if he/she does not want to.
Not getting enough dialysis can kill, too. I lost three patients this week, two to inadequate dialysis. One had even lost one arm and both legs. I see a lot of amputations due to inadequate dialysis coupled with diabetes and peripheral vascular disease.
Solid98, that is too funny! And I love your avatar! I have a half standard poodle half collie at home that I adore!
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thanks smartcookie but not thinking of going down that path...yet....
i am on my own with nobody to keep company with and all these disease ive got..diabetes .heart. BP. kidney failure..aching tired bones n really dont have a life.eg. fishing camping socializing.and any hobby a normal guy grows up with it just makes it hard to go on .
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It is indeed difficult living with Kidney failure. The constant exhaustion. Add to that the constant pain of permanent physical disabilities from far too many injuries of leading a very physical life. It is VERY difficult.
But we push on because that is what we do. Simply keep on going.
Hang in there.
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Hello Riki
Would you explain your shower technique when you were on PD
I am always trying to do the best for my alternate belly button and you may have a better routine
Thank you
I wouldn't do anything without making sure that it's okay with your dialysis centre. This is what I did as a kid, 25 years ago, and when I asked about it, going back to dialysis as an adult, just the look I was given made me well aware that it wasn't done. I was on PD a couple of years as an adult before they allowed me to start doing this type of dressing again.
The shower technique is fairly simple. I did something similar near the end of my time on PD. I always left the dressing on when I was in the shower, and took it off just before I got out. I was told (again, 25 years ago) to let the water run over it for a minute, after I'd finished washing everything else. Once out of the shower, I'd use a clean cloth to dry the site, clean the area where the tube and skin meet with a betadine swab, then cover with a mepore. I changed the dressing whenever I felt it needed to be changed. As an adult, the mepore was switched for a piece of gauze and 3M wide medical tape, with the gauze having a dab of gentimycen ointment on it.
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All we have to do is hang on help is coming. Implantable Artificial Kidney is going to start testing in the near future, and I read a strange story today about chimera organs. Some university using private funds has managed to combine pig embryo with human cells which will grow into a transplantable organs. A little creepy but still the tissue would match the recipient so no drugs.
sp mod Cas
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can someone clarify for me .You have a transplant 1 or both kidneys do you somewhere in the future go back to HD..PD for any unforeseen issues obviously rejection would b main cause
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You can only get one transplanted kidney at a time. That is enough to restore normal function. A small number of transplants do not even work, and then I have seen transplants last 25+ years. The key is taking care of yourself and getting a good match. Live donor kidneys do better because they don't have to "wake back up" like cadaver kidneys. Transplants can fail for all sorts of reasons, probably the number one being rejection. Sometimes the issues that killed your native kidneys can take out the transplanted one. Nothing is ever for sure, but transplants are much safer now and the drugs to keep from rejecting are getting better with less side effects. Patients who are on the transplant list, even without ever getting a kidney, have much better outcomes.
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You can only get one transplanted kidney at a time. That is enough to restore normal function. A small number of transplants do not even work, and then I have seen transplants last 25+ years. The key is taking care of yourself and getting a good match. Live donor kidneys do better because they don't have to "wake back up" like cadaver kidneys. Transplants can fail for all sorts of reasons, probably the number one being rejection. Sometimes the issues that killed your native kidneys can take out the transplanted one. Nothing is ever for sure, but transplants are much safer now and the drugs to keep from rejecting are getting better with less side effects. Patients who are on the transplant list, even without ever getting a kidney, have much better outcomes.
Dear smartcookie, however much I love you, and all that, it IS poss to get 2 kidneys, like when they are from a kid.
Taking good care of youself and getting a good match is NOT the magical key to keeping your transplanted organ a long time. It's probably as much as 60% the rest is luck. And people on the transplant list have better outcomes because they are 'good enough' to receive one in the first place.
Love, Cas
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I agree with cass. I was once offered two cadaveric kidneys that were from a child.
I had an interesting discussion with my tx coordinator not long ago about keys to keeping a transplanted organ. In her experience, the most frequent cause of loss of an allograft is rejection, and the most frequent cause of rejection is poor patient compliance with taking their meds. She expressed real surprise when relating how many patients they have who take their meds when they can be arsed to do so. They might take them with food when they are not supposed to or take them on an empty stomach when they're not supposed to, or they may unthinkingly take them too close to the time they take their vitamins, or they might not take them at the proper times of day. So when I was experiencing an inexplicable rise in my creatinine, the very first thing my coordinator asked me was if I was taking my meds.
I don't know how much to attribute to luck, but I do know that a tx patient will be more likely to have a successful outcome if s/he is meticulous with her/his meds regimen. This is part of taking good care of yourself, and I think it will make you "luckier".
Cas is also correct in pointing out that those on the tx list are already "healthier". You have to be just healthy enough while also being just sick enough to make the cut.
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Thank you for correcting me! And you are right, luck is definitely good to have. I was trying to say that what you can do to keep a kidney as long as possible is to take care of yourself, including taking you meds as prescribed. I worded it wrong. You can do everything right and still lose a kidney. It just happens. Transplanted kidneys do not last forever.
I did not know that you could get two kidneys from a child! That is wild! I learn something new every day!
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How many times can you transplant a kidney into someone? Do they run out of room eventually? I had some basic education about kidney disease and dialysis when I started my job, but I have been trying to learn more. The nurses laugh at how many questions I have. So please correct me if I say something wrong! I am still learning about this myself.
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How many times can you transplant a kidney into someone? Do they run out of room eventually? I had some basic education about kidney disease and dialysis when I started my job, but I have been trying to learn more. The nurses laugh at how many questions I have. So please correct me if I say something wrong! I am still learning about this myself.
I was told that in order to have a third transplant, one of my other 2 failed transplanted kidneys will have to be removed.. that will be done at the time of the transplant, and that's because there isn't any room left
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Very interesting!! So a person can have four kidneys in him/her at one time! The two native and two transplanted.
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The nurses laugh at how many questions I have. I am still learning about this myself.
I've been on HD 3 YRS now n i get the same response from my nurses when i ask questions bout dialysis i'm the one on HD surely i've got the right to know whats happening to my body thru dialysis
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Loogadis: http://www.weirdasianews.com/2009/05/27/indian-man-5-kidneys/
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Very interesting!! So a person can have four kidneys in him/her at one time! The two native and two transplanted.
I have 4, 2 native and 2 transplanted. Unfortunately, none of them have function
I have a shirt that I bought from the IHD CafePress site.. says "kidney sale, buy 1, get one free" and underneath, in smaller writing in brackets it says, "not working." I always say that I could make a killing because I have 4 kidneys when most people only have 2. *G*
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That is so cool, Riki! And I loved the article, Simon Dog! Five kidneys! :o