I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: paddbear0000 on March 17, 2008, 11:51:59 AM
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I was talking to someone at school a little while ago when somehow the subject of me needing a transplant came up. At one point in the conversation, the girl said she felt it was selfish that I planned on doing a preemptive transplant and not doing dialysis at all. She said that why should I get a kidney when there are people suffering on dialysis and I won't be?! I have often thought about this myself to be honest and was wondering what other people's thoughts were on this.
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Nope. I don't think it's selfish. I think it's smart, if you can, to skip dialysis altogether. Tell ya what. Tell your girl that SHE can have your
dialysis for you, and let you know what she thinks after she's crashed, infiltrated, had infections, etc.
The whole POINT is to avoid dialysis. I'm getting a little irked at her quite frankly. If you get a transplant before dialysis, ALL the MORE
POWER to you!
I don't think ANYONE here would wish that upon anyone else. Okay. Off my soapbox. I'll try to contain or channel my irksomeness
into something productive....
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There are many opinions on this subject. The best answer is what you and your doctors feel is the best course of action for you. I've been told that the quicker you can get the transplant, the better. If you are fortunate enough to have a matching living donor, what purpose would it serve to wait? Some will tell you that you need to experience dialysis so you can appreciate your new kidney. I don't have to have a heart attack to know I don't want to have one. :grouphug; I hope you can get a transplant as quickly as possible--that is my hope for everyone here waiting. The waiting is hard. Go for it, Paddbear!
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Selfish for not wanting to be sick, miserable, nauseous on a regular basis, broke from spending all your money on gas to get to treatments? Selfish for wanting the best treatment available? Selfish for wanting to skip the health risks associated with long term dialysis?
Hell, that's not selfish, that's just plain sensible! Hook your dippy (and perfectly healthy, I'm guessing) friend up to a stinking machine and see how fast she wants a transplant, too!
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Oh, she's not a friend, just an acquaintance from class! Thank goodness. I'd hate to have to drop her a**!
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Holy crap!!
How on Earth can someone make a judgment like that?!? I will tell you that from the day I was diagnosed, it was my goal, along with my neph and then the transplant center's, to get a preemptive transplant. It happened for me on August 4, 2007.
I had people I thought were on my side tell me I needed dialysis and soon. I knew what was best for me and in the end I, along with my doctor's approval, made the best decision.
It is unfathomable to think that an adult with ESRD won't appreciate or take care of their new kidney unless they experience dialysis.
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Drop her a** to the ground! Go for the transplant as soon as possible. The longer you are on dialysis the poorer your chances of getting to a transplant, because of the medical things that can happen.
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My neph, the folks at the Kidney Foundation and everyone at the transplant centre all told me it's way better to get a preemptive transplant, if you can. I was told it increases the odds of the transplant lasting longer. It's not like we'll totally miss out on the joys of dialysis forever </sarcasm>. We're just trying to put it off for awhile.
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My neph keeps saying that dialysis is just a bridge. It's just a way to keep me alive until a transplant. If you can find a way to get to the other side without using a bridge - more power to ya.
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paddbear -- I vote "Not selfish at all -- just logical, sensible, and smart." If it's at all possible, go for the transplant before dialysis! And, if you need any help "roughing" up that chick, let me know. The way I see it, every transplant done means one less person on dialysis now or down the road, and, that, in my book, is a damn good thing!
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I'm 100% with Petey on this.
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You go for this and good luck.
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This issue has arisen in related form before. If you decide to take a kidney for transplant from the extremely limited supply of cadaver organs available, you also implicitly choose to put your gain in health, vitality, and longevity ahead of someone else's, since the kidney you get is one that does not go to someone else on the waiting list. This choice is selfish to the point of being murderous, since people die from having to wait too long for a transplant, so by taking the cadaver organ offered to you, you condemn those who have to continue waiting to possible death so that you can live. Just because you have waited your turn until the kidney becomes available and is offered to you doesn't mean that your decision to accept that gift of life is not at the same time your free choice to let someone else run the risk of dying on dialysis because you get that kidney and they don't.
In situations where the survivors of a shipwreck have been living for weeks with a limited food supply in a rowboat on the open sea, stronger people have occasionally been willing to give up their assigned food ration for a day or two to help other weaker people survive with the extra food. If we regard those people as heroic, saintly, and noble, what do we think of much stronger people, such as those who have never yet had to endure dialysis, taking a kidney while others who have languished on the machine for years have to continue with this inadequate therapy? Only if you have a living donor who would not donate to anyone but you does your choice to take a kidney not deprive someone else of what may be a life-saving chance.
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I have to agree with Stauffenbergg on this one. But to be honest , will you get the choice? If you have someone willinmg to donate to you then great , i can fully understand that. But if you are waiting for a cadaver donation , then i dont even think you will get a choice , you will end up on dialysis , otherwise why would we have waiting lists ?
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If you have a living donor lined up, I say go for it. I had a living donor lined up for my second transplant (my dad), and we wanted to do a pre-emptive transplant. Unfortunately, because of a pharmacy mess-up, I ended up on dialysis for three months prior to the transplant. I was pretty disappointed, to say the least. If the option is available, take it without looking back!
If you have to go on the list, though, let's be realistic. Considering the wait in most areas of the country is several years and you can only get on the list once your kidney function declines to a certain level, the chances of getting a pre-emptive transplant through the list are slim to nil. So regardless of what you or others think about it, it's pretty much a moot point. Just my :twocents;
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Thats how ignorant some people are hon. Hey I wish my son could have skipped dialysis. More power to ya if you can get a living donor!!!!
Lori/Indiana :bunny:
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My goal was to have a pre-emptive transplant; had my donor, had my surgery date scheduled, and days before surgery learned my PRA was 100%. Long story short, I finally had my surgery 16 months later, but did end up on dialysis for 8 months. I will say that at the time my first surgery was scheduled I kept wondering if the timing was right, as I still felt pretty good (my GFR was around 12) but I wasn't taking into account that I was on so many meds that I was anything but healthy. I was VERY SCARED of dialysis and had it in my head that being on dialysis would put me in the category of being a "sick" person (as if I hadn't been unhealthy up to this point - ha!)
As Psim mentioned, all of my docs said the same thing - a pre-emptive transplant was a good way to go if possible. However, do not put off dialysis if you need it just to have a pre-emptive transplant. You will be far healthier getting the toxins out of your blood on a regular basis and you will feel better as well. I had my fistula surgery 2 months after my originally scheduled transplant surgery and started dialysis 6 months after that. Within that time my GFR went from 12 to 6, and I felt like CRAP. Within a month I felt so much better and my energy level improved as well.
I say "go for it" - if insurance and doctors deem that your health status qualifies you for a transplant and you have a donor ready and willing, don't wait!!! :beer1;
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OMG! She just don't understand. If you are so fortunate to get a transplant prior to dialysis, I say go for it. If she comments more about this again, tell her to kiss your :sir ken;
Sorry, I know that was mean.
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My transplant was from a cadaveric donor. I was on the list for almost two years, went through several potential donors being tested and luckily got a 6/6 match predialysis.
I am honest when I say I did not hesitate to say "HELL YES" when I got the call.
Anything can happen.
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no, if you get a kidney take it
you are :sir ken; not selfish you are lucky
no reason for the butt thing,,, just thought it was cute
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Add me to the list of 100% NOT selfish. The fact is, the majority of patients on long term dialysis will have many other medical problems down the road, and if yo can get a transplant before having to deal with dialysis, then that's a good thing. This however is coming from a person who's NOT pushing for a transplant, and I've been on dialysis over a year. I'm not saying i like dialysis (I think it sucks big fat :sir ken; ), but I just don't want a transplant right now because NxStage is 1000 times better than in-centre (for me at least). But that's another story. Paddbear, go for that transplant and like someone else said, tell that girl that she could gladly do dialysis instead.
Adam
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I would have given pretty much anything to have (another) preemptive transplant. Unfortunately, it wasn't in the cards this time around. I had my PD catheter put in in June of 07, but didn't actually start dialysis until October of '07. I've been on the list since 4/20/07. As of yet none of my donors have panned out and the hospital I'm listed at doesn't do plasmapharesis yet. So...I have no choice. I have to wait. To be quite frank, there aren't many of us who get a choice in this matter so if you DO get the chance for a preemptive transplant...TAKE IT!
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Are you kidding? Run if the call comes and grab that kidney. We are soooooo wanting to get a transplant b-4 Dialysis for Otto he was on it once and did awful on it and never want to go through that again. I would never want ANYBODY on dialsys but I can't have it my way. And if you need me I'll come and give a little :boxing; to your co-worker. :grouphug;
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paddbear -- After reading one or two of the posts here on this thread, I thought maybe I had "jumped the gun" when I told you to go for a transplant before dialysis if you had the chance. Since I'm not the one on dialysis, I went back and discussed your question with my Marvin (13-year ESRD patient). Marvin has been on the waiting list twice -- the first time for 5 1/2 years (March of 1995 until July of 2000) and the second time now for 4 1/2 years (Oct. of 2003 until March 17, 2008 and still waiting); thus, he has actually had his name on the list for a total of ten years. The transplant he did get in the middle was from a living donor (namely, me). He did not have a chance to get a transplant pre-dialysis, as his ESRD was discovered and then four days later he started dialysis.
Here's my Marvin's take on your question (and, he was on his machine here at home when he discussed his feelings about it with me): By all means, Marvin said, if you get the chance to have a transplant (living or cadaveric) before you have to go on dialysis, JUMP at the chance!! Marvin then reached down and picked up his "lines" as his blood was pumping to and from his body through that machine and he said, "I wouldn't want anyone else to have to do this if they can avoid it." Marvin said that he didn't agree with Stauffenberg; he said if you can get on the list for a cadaveric kidney transplant and can get a transplant before you have to start dialysis, you should take it and not feel remorse or guilt that you were taking someone else's potential kidney.
Marvin said he believes that when it's "your" time to get a kidney, it's your time. He said, "If paddbear gets on the list and gets a kidney before I do, I certainly wouldn't begrudge her at all. I would be happy for her. It wouldn't be 'my' kidney that she was getting; it would be 'her' kidney. It was her time and it was meant for her. My time will come, but that was HER time." (Marvin and I are Presbyterians by faith, and we believe that things happen -- or don't happen -- in our lives for a reason. We also believe that God determines in HIS time when the events of our lives will occur. I'm not saying this is right -- I'm just saying this is what we believe.)
So, there you have it, paddbear, from a man who wants desperately to get a kidney transplant, too. Marvin says if you can get a transplant before starting dialysis, you should take it, appreciate it, take good care of it, and thank God above that you didn't have to walk the path he's been walking for so long now.
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paddbear -- After reading one or two of the posts here on this thread, I thought maybe I had "jumped the gun" when I told you to go for a transplant before dialysis if you had the chance. Since I'm not the one on dialysis, I went back and discussed your question with my Marvin (13-year ESRD patient). Marvin has been on the waiting list twice -- the first time for 5 1/2 years (March of 1995 until July of 2000) and the second time now for 4 1/2 years (Oct. of 2003 until March 17, 2008 and still waiting); thus, he has actually had his name on the list for a total of ten years. The transplant he did get in the middle was from a living donor (namely, me). He did not have a chance to get a transplant pre-dialysis, as his ESRD was discovered and then four days later he started dialysis.
Here's my Marvin's take on your question (and, he was on his machine here at home when he discussed his feelings about it with me): By all means, Marvin said, if you get the chance to have a transplant (living or cadaveric) before you have to go on dialysis, JUMP at the chance!! Marvin then reached down and picked up his "lines" as his blood was pumping to and from his body through that machine and he said, "I wouldn't want anyone else to have to do this if they can avoid it." Marvin said that he didn't agree with Stauffenberg; he said if you can get on the list for a cadaveric kidney transplant and can get a transplant before you have to start dialysis, you should take it and not feel remorse or guilt that you were taking someone else's potential kidney.
Marvin said he believes that when it's "your" time to get a kidney, it's your time. He said, "If paddbear gets on the list and gets a kidney before I do, I certainly wouldn't begrudge her at all. I would be happy for her. It wouldn't be 'my' kidney that she was getting; it would be 'her' kidney. It was her time and it was meant for her. My time will come, but that was HER time." (Marvin and I are Presbyterians by faith, and we believe that things happen -- or don't happen -- in our lives for a reason. We also believe that God determines in HIS time when the events of our lives will occur. I'm not saying this is right -- I'm just saying this is what we believe.)
So, there you have it, paddbear, from a man who wants desperately to get a kidney transplant, too. Marvin says if you can get a transplant before starting dialysis, you should take it, appreciate it, take good care of it, and thank God above that you didn't have to walk the path he's been walking for so long now.
Very well said
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Yes jump at the chance if you get the call. Do not hesitate. You can't think about other people who may have gotten the organ as one person mentioned to doing. The reason they call you is because in part your the best match, along with other factors. So you must in a way think of your health first, not others of what could of, might of. Your health comes first, so fight for it. Do what you need to do to obtain good health. Dialysis was a pain, hated going there, didn't go a couple times when I first started till I found a better center. Luckily I only had to wait about a year for my k/p tx and so glad to have it.
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It's a no brainer...get the kidney... :sir ken; to dialysis.
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:clap; Well said petey and Marvin. paddbear GO FOR IT.
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I tend to agree.
Down here I believe you can't easily get on the cadaveric transplant list until you starr dialyisis, and even then the weighting is such that all matches with higher dialysis time will get first "dibs" on a kidney. If you were on the list and a match got to you before you started dialysis (as I said, here in oz I am not sure you are allowed to be active on that list until you start.. but I am not 100% on that).. well then you'd HAVE to take it.. because you would thus be the best match for that organ.
And of course if you had a live donor that worked out hell YEAH take it... you wouldn't be taking anything away from anyone else with a live donor and putting off dialysis is a wonderful thing. So definitely go for it.
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The best time to have a transplant is about 6 months before you need dialysis, the problem is getting onto a list and waiting for a match. If you have a lived donation option look into it well in advance as the whole process takes time, plus you need to book the theatre time for a live donation.
If you get a cadervaric call go for it as you never know when you might get another.
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Not selfish at all! When Rob started this process pre-dialysis, his surgeons said if you can get a transplant before dialysis, you have a better chance at living longer and less complications. Have that aquaintance sit in a dialysis chair for 4 hours at a center and see if she changes her mind. I would never wish what my husband goes through on anyone.
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Janet...I think it would be difficult to find any dialysis patient who woud begrudge someone, especially someone young, vital and with many great years ahead of her, a preemptive transplant. This dialysis stuff makes for a hard life, so if you can avoid it, do so. Anyone waiting may be disappointed, but only in the circumstances, not in you as the recipient. Your transplant would be celebrated, and you acquaintance is just another of the many out there who have no idea what this life is like.
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Hmmm, my last post didn't show up! Anyway, I wanted to thank everyone for sharing their opinions. I really appreciate hearing both sides. If I do go ahead with the preemptive transplant, it will definitely be cadaveric, as I will be doing a kidney/pancreas transplant. So this whole attempt at preemptive might be a moot point since I will have to be put on the list. My transplant coordinator said that the wait time at the Ohio State Transplant Center was approximately 6 months for a kidney/pancreas transplant. I'm not sure I quite believe that, but we'll see.
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i am weighing on this thread a bit late (as I tend to be these days!), but I do not see how looking after your health and well-being could ever be considered as selfish. go for it!
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Paddlebear - you are not selfish. I was working on a pre-emptive transplant from a live donor but due to test cancelletions, transplant unit staff being "too" busy, and life that just got in the way - I was not able to have my final end goal of a pre-emptive transplant. However, it was not for lack of trying. I did end up being one of the very lucky ones though. After a preceeding 10 years of slow kidney failure I ended up having to do dialysis for only 9 months or so before I had my transplant surgery last September. But my short time on dialysis was because of the fact that I had a live donor.
Even though we were working on a live transplant I was also on the regular transplant list. And, I went on this list before I started dialysis - well, it was only a month or two before but they did qualify me for the list.
Good luck in your quest.
Take Care
Sandyb
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My wait time for a kidney and pancreas in Chicago may have been around 6 months, but there are two factors when trying to figure it out. When I was first diagnosed with kidney failure, I went for a kidney transplant. The hospital I was sent to for information seminar said that pancreas transplants are being performed. Unfortunately this hospital did not do one yet since it was new to their program and I didn't want to be the first one there to make a long story short of that experience. So while I was on the kidney transplant list with that hospital, I went to 3 other transplant hospital seminars. About 4 months later I was put on the kidney and pancreas transplant list with the hospital I chose for the surgery. Then while on dialysis I did not know the unit stopped taking blood for transplant screening each month until I got a call from my transplant center asking if I had a transplant from another hospital because I was taking off the list. A person wit the same name somehow got mixed up with mine, so I was taking of the list by a f.u.b.a.r. mistake. After everything was straightened out in less than 2 months, I received my k/p transplant. So if we count the day I was put on the k/p transplant to the day I got my transplant is 11 months. It could have been less if I wasn't taken off the list. So it is possible for a 6 month wait time.
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No way....six months???!!! What is it for just a kidney? I'm thinking I need to get myself waitlisted in Chicago! My wait time is supposed to be 5-6 years at least (due to my sensitized state).
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At the time I was going to transplant seminars before my transplant, the different centers were say 4 to 7 years for a kidney only and about 2 years for a dual k/p transplant. One thing I had going in my favor was my health, then being taken off the list by a f.u.b.a.r. error. I was told why dual organs have a short wait time compared to a single transplant (kidney), but I am not 100% sure if my memory is right.
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I say go for it! When we found out my mom's kidneys were failing, I wanted to know who to call about being tested. When we found out her PRA was high, I looked on the internet and found out everything I could. I found this website in the process...my mom isn't on dialysis yet. She's hanging in at 9% function and waiting for her number in queue to be called (she has a living donor, my sister). My siblings and I did everything we could short of doing our own nephrectomies to help our mom and I will say that yes, we are being selfsih. We don't want to lose our mother. We love her too much. I say do what works for you. It's your life and you need to be proactive. I wish you all the luck in the world!
Beth
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For some reason I am not sure Kidney/Pancreas transplant wait times are A LOT less than just Kidney transplant wait times (and I know that doesn't really make a lot of sense). I understand in Australia it's about 8 months for a K/P transplant vs. 4 years for a Kidney. I had a friend in the unit who is waiting for a K/P transplant and she told me they told her it was approx 8 months wait list.
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I have the same question. Why would a K/P transplant be faster than just kidney. Since the organs will be come from a deceased donor why don't they go to the matching kidney patient that has been on the list the longest?
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Good to see you Razman.
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I have the same question. Why would a K/P transplant be faster than just kidney. Since the organs will be come from a deceased donor why don't they go to the matching kidney patient that has been on the list the longest?
Kidney patients are given transplants in order of "wait time" but other organs are allocated by medical urgency. You can do dialysis for kidney failure, but if you lose your pancreas there's no treatment that can sustain life. I believe that's why kidney/pancreas transplants are given ahead of kidney transplants.
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I went to the UCLA transplant orientation yesterday. The wait time for straight kidney transplants is 5-7 years. The wait time for
pancreas/kidney was said to be 18 months to 2 years.
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okarol is right ....
Kidney patients are given transplants in order of "wait time" but other organs are allocated by medical urgency. You can do dialysis for kidney failure, but if you lose your pancreas there's no treatment that can sustain life. I believe that's why kidney/pancreas transplants are given ahead of kidney transplants.
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Different hospitals have different opinions about Pancreas/Kidney transplants. The surgeons at Rob's hospital, Massachusetts General in Boston tell us that a P/K transplant is way more taxing on the body and therefore won't do it. They have seen better results of keeping both organs longer by doing separate organ transplants.
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People generally require pancreatic transplants because they have type 1 diabetes, in which one tiny sub-structure within the pancreas, the beta cells, has been destroyed. They can live about two-thirds of a normal life expectancy without any beta cell function at all, just by injecting insulin to replace the most metabolically important of the many hormones that healthy beta cells normally produce, so a pancreas transplant is not needed on any special emergency basis, since the lack of beta cells is easier on the body than the lack of kidneys is.
Aside from insulin and its related hormones, the pancreas produces digestive enzymes, all of which are easily substituted for by oral medications if the pancreatic function aside from beta cell function ceases for any reason. Pancreas transplant patients whose pancreas is being destroyed by immunological processes discover this usually not because of symptoms from the rest of the pancreas failing, but just from the beta cells dying off, which will cause less insulin to be produced and become visible as elevated blood sugar.
The waiting list for combined pancreas/kidney transplants or close sequential kidney and pancreas transplants (which are now preferred) is shorter than for kidneys simply because it is a separate list from the kidney waiting list. Only a select minority of patients are put on the pancreas/kidney list, and although this list only has a small number of pancreases available, the wait is still less because of the relatively small number of patients allowed on that list in the first place. In contrast, everyone except those too old or with too many co-morbidities goes onto the massively long wait list for a kidney.
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That is my thought exactly why cant we just get a transplant if we need one? Why do we need dialysis? I just want my transplant and get on with my life. Dialysis takes so nuch out of us and people just don't get that.
If I could have a transplant and skip this dialysis thing I would be lovin life!!!
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Different hospitals have different opinions about Pancreas/Kidney transplants. The surgeons at Rob's hospital, Massachusetts General in Boston tell us that a P/K transplant is way more taxing on the body and therefore won't do it. They have seen better results of keeping both organs longer by doing separate organ transplants.
Glad I didn't go there. I just don't believe in their thinking. Get it over and done with in one thinking, why put life on hold twice, plus the organs are from the same person. I haven't had any major issues with my simultaneous tx, so I would have to do some research to get an idea why they believe that protocol of separate transplants is better.
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Different hospitals have different opinions about Pancreas/Kidney transplants. The surgeons at Rob's hospital, Massachusetts General in Boston tell us that a P/K transplant is way more taxing on the body and therefore won't do it. They have seen better results of keeping both organs longer by doing separate organ transplants.
Glad I didn't go there. I just don't believe in their thinking. Get it over and done with in one thinking, why put life on hold twice, plus the organs are from the same person. I haven't had any major issues with my simultaneous tx, so I would have to do some research to get an idea why they believe that protocol of separate transplants is better.
Rob would rather have a better chance at keeping both organs, so he is staying with the hospital. It is one of the best hospitals in the world and the surgeons are superb. Also this hospital has the best odds of keeping a kidney from rejecting.
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That is my thought exactly why cant we just get a transplant if we need one? Why do we need dialysis? I just want my transplant and get on with my life. Dialysis takes so nuch out of us and people just don't get that.
If I could have a transplant and skip this dialysis thing I would be lovin life!!!
Transplants are hard, yo! It's great to get one and sustain it, but it was HARD! I was in the hospital every three to six weeks because of acute rejection. It was just harder to have a normal life after transplant. Although, I gotta agree. Dialysis just takes up so much time.....and it's nice to be able to the have those extra 15 hours to yourself. It's a part time job! If I got paid for every hour that I spent in dialysis, I'd be a rich woman with my own island in the Caribbean, sipping pina coladas with my sexy man slaves feeding me grapes off the vine and rubbing my feet!!!!
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No.
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If I got paid for every hour that I spent in dialysis, I'd be a rich woman with my own island in the Caribbean, sipping pina coladas with my sexy man slaves feeding me grapes off the vine and rubbing my feet!!!!
Now That would be the life. !!
EDITED: Fixed quote tag - okarol/admin
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Now are we talking about being paid in American dollars or Euros to lead the good life? :rofl;
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Well, yen, of course!!!!!
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Selfish? NOT! If you can get a transplant straight away and avoid any affects of bone disease, organ disease, etc you go for it! How dare that girl even say something like that? As far as transplant list for K/P usually people eligible for pancreas transplants are Type 1 juvenile onset diabetics and it is a different transplant list. It is absolutely wonderful when a pt gets both - no more insulin, no more dialysis.