I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Transplant Discussion => Topic started by: Sax-O-Trix on July 01, 2010, 10:23:37 PM
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Not to be a party-pooper here, but... I am having serious second thoughts about getting a transplant, I guess I am just plain scared silly. After reading the stats on the rate of cancer for all types of transplants and a comment from my GP about "what I am getting myself into", I am wondering if PD wouldn't be a better option. The rate of survival is really low for cancer patients on immuno drugs and the chances getting cancer are at least 2.6 times the average. I guess a certain virus (Barr?) causes many of the cancers seen in post-transplant patients and you can be teested to see if you have the anti-bodies. If you already have the anti-bodies going into the transplant, your chances are lower of actually getting certain types of cancers from what I have read. I think I may request the blood test.
It seems that people can survive for many years on dialysis and if you don't end up with an infection, PD seems like an acceptable alternative (but then again, I am not there yet so I don't know squat about the daily grind of PD or HD.)
Any words of wisdom?
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There just is no perfect solution. There are plenty of people out there who are perfectly happy with their dialysis modality and wouldn't touch a transplant with a 10 foot pole. Others are desperate for whatever they have to do to get off D. My advice would be to make a list of all of your concerns about transplantation and post-transplantation and ask your neph. You could always start the listing process and meet with a transplant coordinator and then pull out if you decide this is not the path for you. No one is ever going to force you to have a transplant, even if you are listen and they find the perfect match for you.
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I agree and want to ad...
Some people list in any case and then see how they feel at the time when a kidney is presented as this can take a while (years)and feelings change from day to day.
Transplant is just another form of treatment and not a cure. It has all it's side effects just like any other treatment.
The difficult part is : To find the form of treatment that is best for you.
Information ! Information! is key!
Good luck in your choice.
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I'm still waiting for a transplant so I can't speak "from the other side" - but I can put my two cents in with my opinion on the issue. For mine, yes it is a concern, but heck staying on dialysis can be a concern (PD isn't an option for me, unfortunately). The way I see it either way contains risk of some form or other, and I'd rather choose the best *treatment* option for me - that includes the option that provides the best lifestyle that it can, for as long as it can. So yes, I'm willing to take my chances. We know plenty of folks who have lived literally decades with transplants without serious complications, and that's good enough for me.
Sax, I am not sure how old you are and your goals etc, which absolutely will influence any decision you make - and at the end of the day you're not being a party pooper, but trying to make an informed decision that is the best for you and what YOU are comfortable with - I think that actually means a lot, and how comfortable/happy we are with our medical situation can influence how well we do. What I mean is that if you're concerned and worried than can create negative anxiety, and thus stress, which can cause physical problems.
Yep, there are many people doing well on long term dialysis - quite a few live right here on IHD. Just as much as there are many people doing well with transplants - so I think the choice comes down to where you are at,. what your longer term goals are, and how comfortable you feel with the various options you have.
As I said above for me, and just me, it's worth it - I will roll the dice - My view is that something bad can happen if I stay on D, or get a transplant or whatever.. I suppose I'm sort of a fatalist - if it's meant to happen, it will one way or another... since I can't do anything about that one way or another, then my choice is based on the best longer term treatment option for me, and that is to go with a transplant.
Everyone else's mileage may vary.
:twocents;
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I am a widow a few weeks shy of my 44th birthday and my main concern lies with living long enough to get my 11 and 13 year old daughters to adulthood. Basically, 10 years would be great, anything beyond that would be icing on the cake.
The thought of HD is just plain frightening... Needles, blood, needles, pain, needles, finding time to sit still for hours at a center, needles, not being able to travel easily w/o advanced planning, needles, being wiped out after HD sessions, needles, possibly not being able to work (loss of health ins., decent pay and life insurance), needles, being at the mercy of nurses, needles...
PD seems like it would be easier (relatively speaking.) I would be in charge of doing the exchanges, could still travel (always by car and usually only for a few days at a time, so taking supplies with me seems reasonable), hopefully continue to work FT, having to be super sterile is a concern (dogs and cats), but it seems to beat HD for me...
Obviously, TX would offer the most freedom and possibility of as normal a life as possible once you get regulated on the meds. If cancer weren't such a frightening prospect, I wouldn't even be hesitating about a TX. I meet with my neph on July 9th, I will be armed with loads of questions!
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Sax, just on your needle phobia - I am a big wuss when it comes to needles also - I just do not look when they are going in (coming out is much easier for some reason :urcrazy;). When they stick the needles I think about something else (usually young ladies >:D) or I chat with the nurse doing the needling(amazingly I can make them laugh by saying something stupid and they manage to needle me just fine!!!). Really after awhile most of the time I just don't feel it, and needles aren't really a big deal for me anymore. Blood? yeah well it's this red stuff going through a tube... looks kind of like a nice red wine... luckily i don't drink red ! :rofl;).
I think whichever option you take: PD, HD and/or TX down the track you will indeed be there for your daughters to blossom into lovely young ladies!!! I have no doubt of that. There's no reason to think you wouldn't - if you're fairly healthy apart from the kidney thing there's no reason why you can't be bantering with us, and your kids, in 25+ years.
Be positive. This is not the end of the world, and while there are risks to any treatment option there are risks sin every day life - heck I could get hit by a bus when I leave my office. That's life. If you don't take a risk, you don't get a reward. You have two beautiful rewards right now, but there's more to come (rewards I mean, not children!!)
:grouphug; :grouphug; :grouphug; :grouphug; :grouphug;
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Having had a transplant for 23 years (at 31 after 5 years of dialysis and doing my own needles) and now on my second transplant after another 10 months of D, for me the choice is clear. My quality of life is far better with transplant than on D, although I firmly believe that we must each find ways to live with what we have and if D is what we must do then we can do it with grace and indeed have good and joyful lives. There are risks everywhere we look. Dialysis has long term implications...so do transplants. I think all of us afflicted with this illness need to do our level best to care for our bodies and our attitudes as best we can...with help whenever necessary. With transplants I'm super careful about the sun because of cancer risks, I'm very attentive to the food I eat, I consider exercise a part of my "job" to remain alive and healthy and so on. Of course, this isn't all that much different than what we should all be doing to get the best performance from our bodies anyway...kind of like cars in a way...we just happen to need extra fine tuning and attention.
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Sax, I have the same concerns as you. I am trying to get on the transplant list because I think that would be the best treatment for me, but once I am listed, I will probably have to do D for the years it will take for me to get a new kidney. So, I have to decide on a modality, and I have chosen hemo but NOT in a center for all of the reasons you have outlined. Yes, there is the needle issue, but you have no idea how many people have posted about their aversion to needles only to overcome them and....OMG....STICK THEMSELVES!!!!!!!!!!! Can you believe that? You may want to investigate NxStage which is home hemo you do each day for a shorter period of time. When my DH gets home from work, we make dinner and then usually read or watch something from Netflix. Once I go on D and if NxStage is a viable plan (I don't see why it wouldn't be), we will do the same thing just with me on my nifty neat-o portable dialysis machine. Since you dialyze each day, the clinical results are very good, and you can travel with this setup, too. Please, look into this option. If you hate it, you don't have to do it.
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I h
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Hi, Sax. I am extremely biased in favour of transplant as hemo was miserable (but thankfully brief)for me both times I had it. Needles were not the issue (don't think they were ever used), it was severe headache and vomiting that made me hate dialysis.
I wonder where the cancer fear is coming from? Do you have a strong family history of it? They will always test for both your EBV status and CMV status before listing you, but you will have to ask if you want to know the findings. I received a kidney from my husband and I found out I was EBV+/CMV- while he was positive for both. Therefore, I am on Valcyte (to hopefully prevent CMV infection) for a few months, maybe a year. I am going to bet you are EBV+ since at least 75% of the adult population is. Have you ever had mono or been around someone who has had it? The primary cancer concern for kidney transplant patients as far as I've ever known is malignant melanoma, which is unrelated to EBV, but there is much a person can do to reduce their risk (i.e. wear sunscreen always and wear clothing that covers more of your skin). I don't worry about the clothing so much when I have sunblock on, but I think you can get clothing rated at SPF 50 (I know they make these for kids, not sure about adults).
The trouble with PD for you, being so young, is that 10 years as I understand it would be a good long run for peritoneal. Not impossible, but getting toward the upper limit of what one can expect from this type of dialysis. I know you said you would be happy with ten more years, but why set your sights so low? Whether you choose dialysis or transplant, I think you can expect several more decades. I know I intend to live to see if my children become the people that I suspect that they will, and to see what kind of parents they make.
Could you give some context to your GP's statement? Loads of people, some of them with MD degrees, lack any real knowledge of transplant. Talk to a nephrologist, preferably a transplant one, about your concerns. I would get listed if I were you, just to keep your options open and earn time.
It is your decision in the end, and no one here is going to fault you for choosing one path over the other. Best of luck!
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I must admit I have the same fear Sax, when I was told that cancer was a risk I thought great! firts they tell me a new used kidney may only last 10 years in some cases than I might get cancer from the drugs...so let me get this straight my new kidney stops working and I get cancer, so now I have kidey failure and cancer too...I explained this too a guy at work on day and you know what that arse said too me, he said well yeah life is a big gamble you could be in the road and get hit by a car. I didn't say anything back I just thought yeah your right life is a gamble because I could just choke you too death right now. So this is just a decision yo are going to have to make when the time comes, but I think it might be worth the risk for me.
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My young GP asked me if I knew that transplant patients were at a higher risk of cancer and he wanted to know if I was willing to take that chance... Mind you, I only see this GP when absolutely necessary. I don't trust him, but can't find another GP in our rural area who is taking new patients. I was in his office for my yearly "here I am, I am in compliance, see you later." He is clueless about my kidney stuff. I have given up on trying to keep him informed. Thankfully, I have been going to the same nephrology practice for nearly 10 years at a major hospital an hour from home. I don't do anything medically without consulting my neph. The GP is for colds and stubbed toes.
Knock on wood, my family does not have a history of cancer. Heart attacks and strokes seem to be our lot. I have known several people who have been dx with cancer in the past few months and thought I'd scare myself a bit by researching cancer rates among all transplant recipients after seeing the "warning label" for kidney transplants in the info packet I was given by the transplant team. Thus the EBV questions. I could deal with staying out of the sun, I live in the Northeast, work inside during the day and am not a sun worshipper to begin with.
I have completed the evaluation process and am waiting to get tenure (making sure I have insurance) with my job (board meeting appointing tenure is in the next two weeks) before I go on the active list. Transplant case manager said that I will go active when I call them to okay the call to my insurance company.
I have at least one sibling ready to complete the evaluation process and we are waiting on another to see about his ABO/Antigens/Crossmatch results. The plan has been a preemptive transplant since the beginning. I was 100% sure that that was the way to go. I am still pretty sure it is the way to go, but as the transplant is becoming more "real", I guess I am just freaking out a little.
20-30 years would be heaven on earth. My kids mean more to me than anything in this world and I am willing to do whatever it takes to be here for them. Being widowed just compounds those feelings... The stresses of being the sole provider are enormous.
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I have two teenage daughters and I am in my 40's also and I knew my only option was to get listed for a transplant. Dialysis was hard on myself and my children. I was wiped out after D and couldn't do the normal mommy things they needed me to do. I am fair skinned with red hair and higher risk than most for skin cancer. My Neph went over this with me multiple times but I didn't think twice when the call came for my transplant. The last 7 months post transplant have been amazing compared to the past five years of being sick and then on D. I have few side effects and I exercise ,eat healthy and drink water like it is my job. I don't take one moment for granted. I have a hard time even taking a nap because I feel like I am wasting my time. To get a transplant or not is not something to take lightly and you are very smart to be conflicted. It is a decision only you can make. For me it was easy.....I knew I couldn't live on D and function at the level I wanted to or needed to. Listen to what your instincts are telling you and you can't go wrong.
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Cancer was and is a big scary point for us as well. Married to a man that has smoked since he was 14 years old, already has the beginning signs of emphysema and has COPD, it makes me worry what the anti-rejection meds would do.
In the last 3 years, we've waffled back and forth between wanting it. He has 3 siblings all willing to give him a kidney, right now it's a matter of him quitting smoking, losing 60 lbs (which is hard to do on dialysis when you don't feel good) and being "compliant" to what the doctors already tell him to do.
It's a big choice and to be honest, right now dialysis seems the "safer" bet for us.
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OK, I am getting a picture of your GP. Stubbed toes I understand, but are you quite sure you want to trust him with colds? :sarcasm; :rofl;
I have never heard of an MD trying to talk someone out of a transplant, but there is a first time for everything I suppose. Perhaps your GP should come on here and talk to some genuine transplant patients? I have been a transplant patient for over 34 years, and I am incredibly thankful to be able to report that I have no cancer. I have a stat for him, if you ever find that you are anxious to beat your head against that wall again: the average (or more accurately 'half-life') of a live-donor kidney transplant is 25 years. This means that after 25 years, 50% of recipients transplanted this year will still have their kidney. So, if 20-30 years sounds good to you, I would jump and not look back.
I have known several people who have been dx with cancer in the past few months and thought I'd scare myself a bit by researching cancer rates among all transplant recipients after seeing the "warning label" for kidney transplants in the info packet I was given by the transplant team.
I'm sorry those people had to receive this scary news, but I did also laugh at reading this. I find myself wandering around the Internet at times, researching these possible side-effects, too, and then end up thinking "why am I doing this to myself - I know what misery this brings" and I stop. I think in many ways I was lucky because little was known about transplant when I had my first, and I really had no say in my treatment anyhow.
Very normal to 'freak out' as the transplant approaches. I was a bit of a wreck before my second, and then I got so sick from dialysis and everything else that the big, emotional scene I was expecting with my husband (donor) or the surgeon never happened. I had such a splitting headache, I could barely respond to anyone, so no tears or last-minute agonizing about whether to call it off or not. I only have the vaguest memory of saying goodbye to my husband, and my operation was only 3 months ago. I guess headaches are occasionally good for something....
Good luck. It sounds promising for you. I feel for you on the stress of being a single mom. :cuddle;
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With PD, HD, or transplant, we are all going to die with much high rates than the general population. The question is which one will get us to live a little longer with a better living quality. The answer is very clear: transplant. The mortality rate of transplanted patients die from cancer is much lower than the patients on dialysis. If one just wants to live 10 years as Sax said, transplant is perfect, the mean expected transplanted kidney life is 11-13 years with deceased donors and 18-20 years with living donors. If one wants to live more than 20 years, it may be good to do some good dialysis for a few years and then have a transplant. Cancer occurs most likely for longtime transplanted patients.
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Sax, I went through the same thought process before deciding to get on UNOS. My mother was transplanted in the mid-80's, and I saw the back side of a transplant. The prednisone had destroyed all of my mom's major organs. Since she had Alport's Syndrome, she went into kidney failure with relatively good health. The end was simply dreadful. She always told me it was worth it; she said she had 13 good years she would not have had otherwise.
I've been on dialysis for almost 4 years now. The first 3 went quite well, and I still vacillated on whether or not to take the transplant when I got the call. The last year? Not so much. I'll take that kidney when I get the call.
Age matters, too. I'm 59 so a transplant is not going to add so much quantity as quality to the years I have left. Were I in my young adulthood, I'd probably approach this quite differently. Also, post-tx drugs have been refiined since my mom's day, and I hope to have a better outcome 13 years out than she did.
I'm still on the wait list after 3 years. Good luck in making your difficult decision.
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I've done PD, HD and Transplant. At first I didn't want a transplant because I was worried about the risk, and I was doing so well on PD. The problem is that long term dialysis wears on your body, and you are on a downward spiral health wise. You don't get better, you just try to maintain you health. Transplant makes your health better, and the drug side effects are the price you pay.
Also, everyone does not get every side effect, and the drugs effect everyone differently. So you may have an increased cancer risk, though never get cancer.
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I had to be on PD for 3 months before my transplant in December and when I went to meet with the surgeon who was going to put in my catheter, he told me, don't do a live donor transplant! Cadaver transplants work just as well! I was crushed. I was so conflicted as I never wanted to be on dialysis but my brother wasn't through with his compatibility testing so I was going through the process of starting dialysis, I was torn about my brother having such major surgery, and there was a doctor telling me not to do live donation. (Turned out he had a good friend whose mother donated her kidney and she ended up in kidney failure as well.)
I also started reading things on the internet about what could go wrong with a transplant and all the side effects of the drugs, etc. I am 6 months post transplant now and, all in all, very happy with my choice. Yes, I have to change my life style a bit (you can find lots of posts on post-transplant life) but to not be tied to that PD machine is heaven.
As others have said, in the end, you have to live with your decision. Just know that there are pros and cons to whatever you choose. There isn't a perfect solution to our kidney disease.
Good luck with your decision.
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With PD, HD, or transplant, we are all going to die with much high rates than the general population. The question is which one will get us to live a little longer with a better living quality. The answer is very clear: transplant. The mortality rate of transplanted patients die from cancer is much lower than the patients on dialysis. If one just wants to live 10 years as Sax said, transplant is perfect, the mean expected transplanted kidney life is 11-13 years with deceased donors and 18-20 years with living donors. If one wants to live more than 20 years, it may be good to do some good dialysis for a few years and then have a transplant. Cancer occurs most likely for longtime transplanted patients.
Sorry, but I have to disagree with much of this. Every surgeon I have ever spoken to and journal article I have read said that preemptive transplant is the way to go. It is perfectly possible to live 20+ years with a transplant, and Sax has said she has live donors ready to go and that this is more of an insurance issue now. Obviously one can live this long on dialysis, but it will certainly require more commitment and strict attention to daily maintenance than transplant ever will. I am sorry to say, but the innovations in transplant are moving at a much faster pace than dialysis. The iniquity of this has been discussed. Research seems almost exclusively focused on transplant.
Jie, do you have literature showing a link between long term transplants and cancer? I have never read about a long time transplant recipient coming down with cancer. I am sure these people exist, but do not necessarily buy that the numbers are greater than in other recipients. I think when one gets to a certain number of years on these drugs, it is difficult to say whether the drugs have caused this or if these individuals would have contracted cancer regardless. Breast cancer runs in my family, sort of, as it seems to only appear late in life. Both of my grandmothers had/have it. One died at 92, the other is still alive at 90. Cancer appears in almost everyone who lives long enough - eventually our cells ('our' meaning the human race) will malfunction. My cousin (all of 27 or so years old) was diagnosed with stage iv brain cancer (inoperable) last year. The doctors don't know why he got this. It makes me grateful that all I have is piddly ESRD. Transplant or dialysis is in fact a perfect solution when I look at his options.
BrandyChloe, I would want to report that doctor. He gave you factually incorrect medical information because he wished to have you follow his agenda. I find that unconscionable and am glad you followed your own path.
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It is just a common sense that the longer one takes the post-transplant drugs, it exposes more to cancers and has a higher risk, like skin cancer. I know some transplant patients with skin cancer after about 20 years of transplants. What I tried to make is that how to minimize the risk of cancers and take the fear of cancers out of transplant.
Cariad, I think you have very little disagreement with my whole statements except for this cancer issue. If you disagree most of my statements, then you contradict youselves that the transplant is better than dialysis. Nowdays, many surgeons like preemptive transplants. Not too long ago, a few months of dialysis before the transplant were preferred to cleaning the wastes and stabilize the patients before the transplant.
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Watch it with skin cancer: My friend James had a transplant and got skin cancer which got very bad, eventually he died I think of complications related to skin cancer? I'm not sure what the actual cause of death was.
And my DH had some skin cancer cut off his head the other year.
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It is just a common sense that the longer one takes the post-transplant drugs, it exposes more to cancers and has a higher risk, like skin cancer. I know some transplant patients with skin cancer after about 20 years of transplants. What I tried to make is that how to minimize the risk of cancers and take the fear of cancers out of transplant.
I think I do disagree with much of your previous statement, and I also disagree with relying upon 'common sense' rather than data. It seems common sense to me that long term transplant patients tolerate these drugs really well and therefore may not be as susceptible to many of the more dangerous side effects. Skin cancer, sadly, is not an uncommon cancer and as I said, you cannot say that an individual transplant patient who gets skin cancer would not have had it without the transplant drugs. You stated that you recommended a few years of dialysis before a transplant for the option of living twenty years and I frankly find that advice odd. It would be much wiser to have a preemptive transplant and, if the time ever comes, go onto dialysis should that transplant fail and a second transplant is not an option for whatever reason.
I don't know how you define "not long ago". I had my first eval in 2004 and was told that I should consider getting a transplant immediately to avoid dialysis. I had about a month of emergency dialysis in 1976 while donors were tested with my first transplant and they certainly gave me as close to a preemptive transplant as they possibly could. I am certain I would not have survived several years on dialysis - but you're right that I would not have died of cancer. Anyway, I was trying to see if you had more information that I did not have, not start an argument. I did not realise that you were approaching this solely from an angle of how to avoid cancer as a side effect.
Nat, I read about your friend James in another post of yours and I am so sorry. I have a mineral make up that I use (a powder) that has SPF15 in it. I now apply it to my eyelids after reading about him. (I use a stronger lotion everywhere else, but my eyes water horribly if I get the lotion too close.) I have been lucky - no skin cancer (yet, touch wood) and I spent most of my childhood in southern California, and rarely used sunscreen. I was a tennis player, so outside all the time. If I do get skin cancer, I would have a hard time just blaming my transplant history. If only we could go back and undo these early mistakes....
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Absolutely right! The skin cancers apparently could have been damage done ten years ago, Gregory's skin specialist told him. I thought quietly about my years sunbaking as a teenager and into my 20's.... I think once the skin cancer started to grow, for my boys James and Gregory, then the immuno suppressants allowed the growth to be faster bigger nastier. Whereas if you were a person not on immuno suppressants it might be a slower trajectory and more effectively treated. These days Gregory wears big cricket hats, and I walk in the sun carrying parasols (well it looks dandy I reckon)... And I keep a close eye on skin cancers, they are visible, therefore, findable. Found early, they are also treatable... and for the record, while I think transplant isn't for everybody and wonder what choice I would make, Gregory is clearly and without question in favour of transplant over dialysis.
Modification: (another thought) My second cousin? would it be? The husband of my father's cousin? Has been a fisherman all his life, and he has some nasty dangerous skin cancer now and having radiation etc to try and deal with it. And no transplant. My point is just to say to all of you whether you've got a transplant or not, be sun smart (tm). Yes, I am a volunteer skin cancer spruiker these days.
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I see a dermatologist every year to 18 months or so and we review all possibly dodgy looking things. A few times things have been sent off to the lab but never anything cancerous so far. Touch wood but so far so good and I've been on immunosuppressants since 1985.
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BrandyChloe, I would want to report that doctor. He gave you factually incorrect medical information because he wished to have you follow his agenda. I find that unconscionable and am glad you followed your own path.
Totally agree with this. I was aghast when I read that!!! While the technology of transplantation has improved a lot over time, a live donation is ALWAYS preferred due to the fact you can plan it, and take the organ in a controlled way, and the organ/donor body won't be under duress or have any other problems with it - it is the best possible situation to be in.
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I think once the skin cancer started to grow, for my boys James and Gregory, then the immuno suppressants allowed the growth to be faster bigger nastier. Whereas if you were a person not on immuno suppressants it might be a slower trajectory and more effectively treated.
I believe this, too. I think immunosuppressants take the risks you would have already faced, and amplify them. So the issues you would have probably encountered regardless come on younger or more aggressively. I also think that where one lives is a big factor. I have heard that New Zealand has laws rendering sunscreen compulsory for all children, and I've been told it's down to sitting under a giant hole in the ozone. I think in some ways transplant patients are more aware of skin cancer risks, and therefore better motivated to reliably use sunblock.
I had to look up spruiker, even though the context made it clear what you were saying. No idea how to pronounce it, though.
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Yes, the risk of cancer is worth getting a transplant.
You mention you have children. It will be easier on your children not to deal with dialysis because dialysis is something they see and know and feel the consequences of, just as you do. With a transplant, you will have more energy and your children won't have to deal with your issues of dialysis. If nothing else, do it for your children.
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The risks of cancer post transplant are much overlooked especially in the popular press that looks at renal transplant as a cure. Unfortunately, it is a treatment option with its own set of complications including a much higher risk of cancer. Research shows that some immunosuppressant regimens are more likely than others to increase the risk. Skin cancers in transplant patients are an especially deadly combination with renal transplant. It is not melanoma so much that is the issue but instead Squamous Cell Carcinoma that in patients with normal immune systems is relatively benign but in transplant patients can rapidly prove deadly. I wrote about this issue shortly after I joined Bill at DSEN:
http://www.billpeckham.com/from_the_sharp_end_of_the/2008/05/deadly-skin-can.html
In addition to the skin cancers, one of the most dreaded transplant complications is a form of lymphoma called PTLD which stands for Post transplant lymphoproliferative disease. It is especially prevalent in pediatric renal transplants in up to 7% of cases and carries an exceedingly high rate of mortality.
http://emedicine.medscape.com/article/431364-overviewl
The culture of renal transplant as the ONLY effective treatment option for renal disease lends to an overlooking of the risks of renal transplant not only in the popular media, but also in the manner in which the risks of transplant is portrayed during informed consent. Having gone through the transplant informed consent myself, I have been greatly shocked to learn over the last 4 years of the many complications that were completely glossed over by those that gave me my informed consent on transplant. When I developed an early melanoma one month after starting dialysis, I dropped the renal transplant request. I have found very few people who are considering transplant that even know of the high risk of cancer post transplant.
It is a real risk that I personally believe is belittled by the medical community since they compare transplant only to incenter dialysis. I have yet to come across many nephrologists who give a truly informed consent on these issues since in their mind even with the increased risks of cancer being well documented. It should give all those considering transplant pause before running off believing that all of their problems will disappear with a transplant. For me, the risk of cancer is prohibitive in my mind and I will take my chances at this time with daily dialysis which has equal mortality compared to cadaveric transplant. It is not an open and shut comparison between the options, there are personal decisions to consider. The only way in which to make a truly informed decision is to know and understand as much about the individual options as best as possible. In such, I believe that the renal transplant informed consent procedure needs to evolve into the same framework that it is found in all other aspects of medicine that I have been involved with. It is a much different standard than in other areas of medicine. For many it is the best option, for others such as myself, I do not have confidence that it would be the best way to go.
Now, as far as PD, it is an excellent bridge to transplant but at present it does not offer equal mortality compared to cadaveric transplant as daily dialysis has been shown. The issue of needles was a huge issue for me. I hated to even have a PPD done annually with a tiny needle. Now, doing home dialysis, sticking a 15 ga needle in my arm is not fun, but it is not in any way something that I can't do. i simply suck it up and just do. The first time you self cannulate is very scary, but after a fashion, I would never want to have someone else stick me. Once the needles are in, there is no discomfort for me. I would not rule out daily dialysis as a viable option if you decide that you have no peace of mind over the renal transplant. Every one has their individual preferences. It is the duty of your medical team to give you all of the information that you personally need to make that decision. Fortunately today we have incredible access through the internet to highly detailed information on all of these issues. Learn as much as you can about all of the options and then discuss them openly with your medical team. You may decide in the end that transplant is the best option but you deserve to know and understand exactly what the risks and benefits are before you proceed in either direction.
I wish you the best in your decision.
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spruiker
rhymes with puker.
rhymes with filthy lucre.
ah! rhymes with snooker.
This is the delightful thing about an international forum however: now I will discover that people pronounce these four words differently in the USA or the UK. Here in Australia, all those words rhyme. Well, if puker was a legitimate word, which maybe it is, then it would rhyme with the others. : - )
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This thread is beginning to remind me more of the college football fan websites I lurk on than a typical ihd thread. Everybody has to make the decision that's best for them but for me personally I wouldn't trade the three 1/2 months I v'e had since my transplant for 25 years on dialysis. Ive lived more, happier stronger done more than I ever dreamed possible during my time in ESRD. Iget up at 5:30 every morning and go nonstop until 9 PM every night. I was present for my first grandson's birth in Alaska last month and got to hold him before he went to infant icu(5 weeks premature, he's fine now. )That never would have happened if I had been on dialysis(to weak to travel and I might not have lived to see that day. My donor friend Christie is doing extremely well and is so happy she did this. She has never had children I says she now feels fulfilled because she knows she gave the gift of life. During my short time(2 1/2 months) on dialysis Fresenius would never tell me my creatinine level, only that I was getting adequate dialysis. Now i know why.
Mycreatinine was 5.0 when I started dialysis and it was 7.5 the morning of my transplant 12 hours after my last dialysis treatment.
Yes I was fully informed of the cancer risks and every other side effect of the anti-rejection drugs by Mayo in Phoenix before the transplant and when they asked me if I was still ready to proceed I said I've never been so ready for anything in my life. The manager of the clinic where I got dialysis seemed disappointed that I was getting a transplant but the nurses and techs that took care of me told me privately how happy they were that I was getting a transplant because they hated seeing how rapidly I was declining before their eyes. The dietitian at the clinic moved from Arizona to New Hampshire and when I called her a few weeks ago she told me the same thing. My Neph strongly urged me to get the transplant even though if anything she had more of a financial interest in me staying on dialysis because her practice supplied medical services to the clinic where I went. I realize everyone's desires and needs are different but those are mine.
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I have found this 'conversation' very interesting. I am nine weeks into APD and have experienced hardly any problems. I feel better although I didn't really feel terribly ill before starting. My hubby had tests to be a donor but was found to be predisposed to kidney stones and although he has never had one stone, this stops him from being a donor. I am yet to be activated on the transplant list and with my treatment at the moment going so well, am wondering if I want to be. I live in a very sunny hot part of the world and my early years were spent doing lots of swimming, so the skin cancer thing seems to be a big issue for me. I have a history of cancer, with one sister having breast cancer and another dieing of ovarian cancer. I know I can't stay on PD forever.
How lucky we are to have this forum with so many views and ideas to help us make up our minds!
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Here is a link about skin cancer:
http://at-risc.org/TransplantPatients.aspx
Here are some quotes in case one does not want to open the link:
"The immunosuppressive medications necessary for the survival of your transplanted organ also increase your risk of skin cancer.
While there may be a lag time of five to seven years after transplant surgery before skin cancers begin to develop, this period will vary for each organ recipient depending on individual risk factors. For example, if you are older when you receive your transplant, skin cancers may develop earlier. In addition, the longer you take immunosuppressant medication and the higher the dose, the greater your risk of skin cancer. "
"Squamous cell carcinoma is 65 times more common in transplant recipients than in non-transplant patients
Kidney transplant patients are nearly four times more likely to develop melanoma.
In Australia after fourth post-transplant year, 25 percent of heart transplant patients actually die from skin cancer."
I think it is important to understand what is the risk. The minimum way to define the cancer risk is that the risk per year is constant and independent over time. In such a case, the total risk within 20 years is 20 times as high as one year and 2 times as high as 10 years. In the real world, the skin cancer may depend on cumulative exposing to the sun. That is, the risk per year may increase over time, so the total risk within 20 years are more than 20 times as the risk in one year.
Now come back to common sense issues. I think some common sense is needed sometime. When I had my first child, the doctor suggested to have the baby to sleep face down. This was about a standard recommendation at that time. My commom sense told me at that time that this was a bad suggestion. Facedown sleep could block baby breathing. After about 10 or 15 years and many babies died without any reason, this suggestion was stopped.
As a suggestion for dialysis for a few year before transplant for patients who want to live more than 20 years and who fear of cancers, the objective is to minimize cancer risk. As I stated in my post, the risk of dialysis is higher than transplant cancer risk. However, different patients weight different risks differently. This is really a personal decision based on the weighting of different risks.
I used to argue in the other forum that there is an optimal point for preemptive transplant. If one can do the transplant close to the optimal point, preemptive transplant may be the best. But the optimal point is not easy to find. Do you do transplant at 15% GFR or 10% GFR? Some patients can live well with 9 or 10% GFR, or some patients can hold off dialysis for a few years with a GFR of 15%. With the improvement of medicines, shortterm survival of kidneys have improved a lot, but the longterm survival rates do not improve that much. A too early preemptive transplant may be a bad decision for some patients.
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Just wanted to add that two of the transplant surgeons at Piedmont in Atlanta told me that a poorly matched live kidney is FAR better than a perfectly matched cadaverous kidney.
Pete
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Here is a link about skin cancer:
http://at-risc.org/TransplantPatients.aspx
"....In Australia after fourth post-transplant year, 25 percent of heart transplant patients actually die from skin cancer."
I think it is important to understand what is the risk. The minimum way to define the cancer risk is that the risk per year is constant and independent over time. In such a case, the total risk within 20 years is 20 times as high as one year and 2 times as high as 10 years. In the real world, the skin cancer may depend on cumulative exposing to the sun. That is, the risk per year may increase over time, so the total risk within 20 years are more than 20 times as the risk in one year.
??? Well, I certainly do not follow nor agree with your math. Sorry, but constant and independent means just that and would remain at the baseline of 4x as likely than non-transplant patients. And while I agree that sun exposure has a cumulative effect (I think that has more or less been proved) this is true of the entire population, and therefore, we are back to the risk being constant when compared to the general population. This is not indicating that immunosuppressants have a cumulative effect, only sun and age. These stats do not take lifestyle into account, nor family history, nor other confounding factors.
I would never compare heart recipients to kidney recipients, so that last stat from the article is meaningless to me. The fact that 25% of those heart transplant patients die from skin cancer does rather go to my point that if I were going to contract skin cancer from immunosuppressants, it would have happened by now, and I think that is true of most long term transplant recipients. If I understand the math that you are employing, I would need to multiply the squamous cell cancer rate of 65% more likely than the general population by 34.5, or I have a 2242.5% greater likelihood of cancer than non-transplant patients. I don't buy that.
I am returning to this now since my mother phoned during my first response attempt. I don't see why you chose a 1% increase per year. That is just sheer speculation. Even if these risks were that linear (they're not, there's no way) why not say 5% more likely per year, or 50%? This is my life and possible death we are idly discussing, so I only want to deal in factual numbers and percentages, not assumptions and guesses.
I have been thinking about the heart transplant patients, since 25% deceased at four years is a whopping big percentage. I seem to remember Richard saying that there are only 20 million people or so in Australia (I would love it if an Australian would correct me if I'm wrong) and that their list numbers are tiny compared to the US. Heart transplants are relatively new (compared to kidney anyhow) and back when I was on a transplant listserv, there was one 16 year post-heart transplant patient who constantly referred to herself as a 'dinosaur' in that universe. (She was American.) I have to think that Australia performs only a minute number of transplants per year. Small sample=data that cannot be responsibly used to generalize. I don't know how many heart transplants they perform, so it makes a huge difference whether we are talking about 10 per year or 100 per year. The site you linked to is not a peer-reviewed journal article, but rather a site written as a skin cancer primer, so they are not really analysing these numbers in depth. I can almost guarantee that in terms of skin cancer, were we to graph the occurrences in post-transplant patients, we would see a slow increase for the first however many years, a peak at some point, and then a fairly sharp drop-off. I have no data on this, this is only a guess as this seems to be the case with so many medical risks.
I wholeheartedly agree with you that common sense is extremely worthwhile, which is why I am using my common sense to see that my lifestyle choices combined with genes that are not predisposed to skin cancer have seen me this far and will continue to get me through the future. I also am happy to learn of recent, exciting treatments for skin cancer as I know what a concern it is for many transplant recipients.
Of course there is such a thing as too-early for preemptive transplants, which is why when I was encouraged to get a transplant with a GFR still in the 20s I declined. There was absolutely no way that I was going to go on dialysis if I could avoid it, though, because in my case, I suspected I would deteriorate rapidly, as I did the first time. Absolutely every doctor who knew me desperately wanted me to get a preemptive transplant, including, I believe, my surgeon. When I told him I did not mind waiting years to be included in his trial, he found a way to perform the transplant inside of 10 months. Preemptive transplants are more successful according to statistics, but of course individuals have circumstances that will translate to not fitting the statistics properly.
There is undoubtedly increased risk for transplant recipients and cancer, which is what I've been saying since the beginning of this particular discussion.
Nat, those words do indeed rhyme here, although I have to admit I always thought lucre was pronounced 'lukra'. I love the word spruiker! Thanks for clarifying.
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BrandyChloe, I would want to report that doctor. He gave you factually incorrect medical information because he wished to have you follow his agenda. I find that unconscionable and am glad you followed your own path.
Totally agree with this. I was aghast when I read that!!! While the technology of transplantation has improved a lot over time, a live donation is ALWAYS preferred due to the fact you can plan it, and take the organ in a controlled way, and the organ/donor body won't be under duress or have any other problems with it - it is the best possible situation to be in.
At the time, I was devastated, but after I calmed down and thought about it, I realized his experience with live kidney donation was not a good one since his best friend and his best friend's mother had a negative experience. He was just sharing that with me. I heard some horror stories of PD cath placements not being done correctly. I never had a problem with the cath he put in me and learned later from my dialysis clinic, that he has the best repuation in Jax for cath placements. So all in all, it didn't turn out badly. :thx;
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Yes I was fully informed of the cancer risks and every other side effect of the anti-rejection drugs by Mayo in Phoenix before the transplant and when they asked me if I was still ready to proceed I said I've never been so ready for anything in my life.
I had my transplant at Mayo Jax and agree, they tell you every possible thing and side effect you could have with the anti-rejection meds and the transplant. After a while, I wondered if they were going to tell me anything positive! But I understand they don't want anyone to come back and say "you didn't tell me that" and my transplant experience with them was great.
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Cariad, yep we're around the 20mil population. No wait, according to wikipedia it's 22 million (http://en.wikipedia.org/wiki/Demographics_of_Australia). Last year, we had 59 heart transplants(!)
(source http://www.anzdata.org.au/anzod/v1/TransplantsByYear.html) and 82 in 2008. Kidneys 770 in 2009 vs. 813 in 2008. So far in 2010 we're at 32 hearts(if I read this correctly) & 273 kidneys(this obviously includes live donations) - 446 were cadaveric donations. So yeah, it is VERY SMALL numbers.
Note the current oz waiting list is 84 for hearts and 1282 for kidneys....
So from that you can extract that it is likely you'd wait less than a year for a heart here, but 4 or so years for a kidney.
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Cariad,
All numbers, 65 times, 4 times and 25%, are from publications with detailed citations in that website. So it is not difficult to check the sample size through reading the original papers if interested. The papers are quite old, and there should be some new publications on it.
As to the total risk of cancers, it will help you understand better if you realize the definition of total risk involves the unit of time. Just think this way, is total risk of getting a cancer the same within one day and within 20 years for a transplant patient? If your answer is no, then you get my idea. If your answer is yes, then need sometime to study the risks. Whether the risk of cancers per year increases or not, the website put out by the professionals said yes. You can find some evidences to argue against this view. I have not found any evidences in your posts to oppose this view.
Regardless the amounts of risks, the most important thing is how one to weight different risks. Personally, I would go for transplant at the time close to starting dialysis, if possible. I know some patients who weight the transplant and post-transplant risks very high and do not want to have a transplant. There are not any right or wrong decisions here since no one knows her or his real risk until she or he did the transplant. We know only the risks for a patient population, not a given individual.
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Cariad,
All numbers, 65 times, 4 times and 25%, are from publications with detailed citations in that website. So it is not difficult to check the sample size through reading the original papers if interested. The papers are quite old, and there should be some new publications on it.
As to the total risk of cancers, it will help you understand better if you realize the definition of total risk involves the unit of time. Just think this way, is total risk of getting a cancer the same within one day and within 20 years for a transplant patient? If your answer is no, then you get my idea. If your answer is yes, then need sometime to study the risks. Whether the risk of cancers per year increases or not, the website put out by the professionals said yes. You can find some evidences to argue against this view. I have not found any evidences in your posts to oppose this view.
Regardless the amounts of risks, the most important thing is how one to weight different risks. Personally, I would go for transplant at the time close to starting dialysis, if possible. I know some patients who weight the transplant and post-transplant risks very high and do not want to have a transplant. There are not any right or wrong decisions here since no one knows her or his real risk until she or he did the transplant. We know only the risks for a patient population, not a given individual.
My point was that I did not follow your math, not that of the website. My further point is, without examining how this data was collected and analysed, we don't have to blindly trust it. The world is littered with statistics based on bad data collected by lazy and/or irresponsible researchers. I like to view the studies for myself. I did not see the citations on the page that you linked, but will try to find time to look them over when I have a chance, which will not be for quite some time I imagine.
You chose to state as fact that the minimum risk is a straight line where x=y if x is the number of years and y is the additional risk. What on earth makes you think that this is the minimum risk? I ask, if we're going to make up statistics, why not say x=1/10y + 5? Do you see how it would take 50 years using this equation I pulled out of the air for the risk to even double that of year zero? I stated I thought it was closer to an inverted parabola, when you look at risk over time for use of immunosuppresants. In order to isolate the risk of the drugs, we most adjust for other factors such as age. The risk over twenty years for a transplant is more because the risk for older people is always more than for younger, in general. But we are looking at extra risk, because only the extra risk can be of concern to a potential transplant patient. My risk is nowhere near what it was when I had my first transplant because I was a kid, but that says nothing of the additional risks I face due to long term immunosuppresant use. By the same token, your additional risk will fall after transplant if, like most people, your drug doses are significantly reduced over time. These stats tell us nothing about what drugs these patients were on, what doses, how old they were, what their sunblock history was like, family history, nothing. We are not the only patient population on these drugs, either. Individuals with autoimmune diseases take them, asthmatics sometimes still have to take prednisone for a lifetime. Cancer patients sometimes take them! There are risks every where, for everyone.
I am not presenting evidence, so I am not surprised you found none. I am arguing against using speculative mathematics that have the potential to scare people who may not be as versed in these issues as we old timers. If I sound exasperated, it is because I am. We seem to be talking across each other now. I don't appreciate being told that I either agree with you or I need to study more. What exactly are your credentials to make such a statement to me? Your example misses the point entirely.
Yes, finally, I agree with you and I have said many times across this site that stats only apply to populations. In fact, they only apply to large populations, so looking at, say, 50 heart transplant recipients in Australia and saying 12 of them died of skin cancer by year four is not giving us any information at all. (Thanks for the demographic data, Richard!) That site is trying to scare people into using sun block, which I am all for, but I fear that it is now scaring people who are considering a transplant, which I do not support at all. We seem to both agree that every individual needs to make the choice that works best for them.
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Hi Cariad,
I guess you still do not understand the total risk has a time unit. When you assume the risk PER YEAR is constant, then total risk within N years will increase linearly over time due to time increases. As I said, this is a minmum assumption. After you do not have confusion with relative risk and absolute risk and confusion with the risk PER YEAR and total risk within a given period, you will understand what I said.
I just did a quick google with "kidney transplant and cancer", a lot of information shows up. Here are three links:
http://www.medicalnewstoday.com/articles/187361.php
http://www.sciencedaily.com/releases/2005/09/050926074404.htm
http://www.medscape.com/viewarticle/516342
From these reports, the risk PER YEAR has also increased after transplant; the longer the transplant, the higher risk PER YEAR. The risks of cancers by 20 years of transplant are much higher than I thought:
"27% of patients developed non-skin cancer and 48% of patients developed skin cancer" by one report, and "82% of kidney transplant recipients develop skin cancer 20 years after being transplanted" by another report.
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I see you still are deeply confused, Jie. Risk is not a linear function in humans, that is just muddled thinking and you are bordering on offensive with your condescending tone. The risk of dying does not even progress in a linear fashion - there are ages with statistically higher odds of dying than their older counterparts. This discussion has entered into the ridiculous and has become a total waste of time. Believe what you want but I would not enter into the field of scientifically analysing human behaviour and cost/benefit if I were you. All I can hope is that people go with the option that suits them, and that those people who opt for transplant take the precautions that everyone on planet earth is advised to take regarding skin cancer.
"82% of kidney transplant recipients develop skin cancer 20 years after being transplanted" by another report.
:rofl; :rofl; :rofl; :rofl;
I'm sure there is a story behind that one but I don't care to look into it.
You seem desperate to prove yourself right with random quotes. Transplant has worked out fabulously for me and coming into the transplant section spewing quotes and links and advising people to decline a preemptive transplant against all prevailing medical evidence is irresponsible. Most skin cancers are treatable, especially if caught early, so I resent your implication that if one wants to LIVE a long time, that they should spend years on dialysis. Ludicrous. There are more risks to the life of both dialysis and transplant patients than just cancer. If skin cancer appears, treat it. My mother told me that her mother has (dunh dunh dunh) SKIN CANCER!!! Basal cell carcinoma. My grandmother told my mother it was no big deal even before the doctors told her the exact same thing. They removed it, she's fine. Oh, and she's 92. Like I said, live long enough, cancer will appear in everyone. I was told that 80% of men ages 80 and over have prostate cancer. Sorry, men of IHD: let the terror commence....
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I see you still are deeply confused, Jie. Risk is not a linear function in humans, that is just muddled thinking and you are bordering on offensive with your condescending tone. The risk of dying does not even progress in a linear fashion - there are ages with statistically higher odds of dying than their older counterparts. This discussion has entered into the ridiculous and has become a total waste of time. Believe what you want but I would not enter into the field of scientifically analysing human behaviour and cost/benefit if I were you. All I can hope is that people go with the option that suits them, and that those people who opt for transplant take the precautions that everyone on planet earth is advised to take regarding skin cancer.
"82% of kidney transplant recipients develop skin cancer 20 years after being transplanted" by another report.
:rofl; :rofl; :rofl; :rofl;
I'm sure there is a story behind that one but I don't care to look into it.
You seem desperate to prove yourself right with random quotes. Transplant has worked out fabulously for me and coming into the transplant section spewing quotes and links and advising people to decline a preemptive transplant against all prevailing medical evidence is irresponsible. Most skin cancers are treatable, especially if caught early, so I resent your implication that if one wants to LIVE a long time, that they should spend years on dialysis. Ludicrous. There are more risks to the life of both dialysis and transplant patients than just cancer. If skin cancer appears, treat it. My mother told me that her mother has (dunh dunh dunh) SKIN CANCER!!! Basal cell carcinoma. My grandmother told my mother it was no big deal even before the doctors told her the exact same thing. They removed it, she's fine. Oh, and she's 92. Like I said, live long enough, cancer will appear in everyone. I was told that 80% of men ages 80 and over have prostate cancer. Sorry, men of IHD: let the terror commence....
The cancer risk with all solid organ transplants is quite real as well as the infection risk which we have not even touched upon. That being said, for many people, renal transplant is the best solution for their situation. Nevertheless, you are belittling the risk of skin cancer specifically which is in error. It is not Basal Cell Carcinomas that are an issue but instead Squamous Cell carcinomas of the skin which are quite common in renal transplant patients and quite deadly in many patients. Quite simply, they behave differently than in patients with an intact immune system where even in patients with normal immunity, a small percentage metastasize as well. In renal transplant patients, it is literally a medical emergency when SCCA is suspected as any dermatologist will confirm.
The risk, benefit and alternative discussion for renal transplant needs to include daily dialysis outcomes that are equal in survival to cadaveric transplant. I suspect very few patients will hear that in their renal transplant talks. I understand a couple of folks had very in-depth discussions at the Mayo, but that is the Mayo and not the ordinary centers doing the transplants nor more importantly the local neph who refers his patients to the transplant center. For some, the outcome will be the choice of daily dialysis and some transplant. Yet why get upset about the truth of transplant that these things are so. We all have renal disease on this site and we all must live with the choices we make, no one gets out of renal disease with ESRD without some degree of risk no matter the renal replacement therapy choice. It is not a matter about what is right and wrong, but instead about knowing and understanding specifically what the risks are and making the best choice possible with that information. The choices often are not easy to make but to make them we truly have to first understand them.
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Cariad,
You are so right on with your comments on this thread. There are a couple of people on here who are so determined to scare the hell out of people that are considering a transplant it is truly amazing. The only other time I have encountered this is the manager of the Fresenius clinic I was treated at. Maybe the three of you should start a new sight called "I love dialysis" because I actually heard the manager use that phrase.
Ed
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Cariad,
You are so right on with your comments on this thread. There are a couple of people on here who are so determined to scare the hell out of people that are considering a transplant it is truly amazing. The only other time I have encountered this is the manager of the Fresenius clinic I was treated at. Maybe the three of you should start a new sight called "I love dialysis" because I actually heard the manager use that phrase.
Ed
Dear Ed, no one is trying to scare anyone about renal transplant. For many it is indeed a life saving renal replacement option. Nevertheless, there is a culture of worship in the US for renal transplant that completely ignores a simple fact that it is not a cure, it is simply one of several options that all of us with renal disease face. The simple fact remains that infection and cancer risk are part of the discussion of renal transplant whether people want to know that or not. Facing the truth of our options is not at all a scare tactic, it is simply the reality that we live with. People with renal transplants can reject the organ and suffer tremendously from the anti-rejection regimens. They are also at a higher risk of cancer as already noted and after all is the topic of discussion here. If people wish to white wash the subject so be it, but does that serve any useful purpose. Let's face it, the risk of dying from ESRD is essentially 100% in a very short period of time. I did have one patient who refused dialysis and she survived way beyond anyone's expectations. Renal disease itself is the scary animal and we do have many incredible options compared to 50 years ago, but they indeed carry their own set of risks and benefits.
The difficulty is that renal transplant is almost always universally compared to conventional incenter care in the US. Japan for instance has survival incenter 2.5 times better than in the US. The popular media always has a story of donation from family and strangers alike, but no one ever hears of those that did poorly after a renal transplant. Unfortunately, there are many doing well on dialysis that have adverse outcomes after transplant. Over all, the majority of renal transplant patients will survive longer and have a better quality of life than patients on dialysis. I don't believe any one is disputing those facts. However, there are many patients who simply are not a candidate for renal transplant among which is anyone at a high cancer risk. It is a relative contraindication in many and in some who have already suffered an episode of cancer it may be an absolute contraindication.
As far as dialysis goes, I would absolutely say I love dialysis but not in the negative connotation that you are implying. Try a transplant program that does not have any dialysis support and you will find a bunch of dead patients since very few people are able to have a preemptive transplant. The lifesaver of the majority of renal transplant patients has been and will continue to be the various forms of artificial dialysis modalities. I despise the manner in which conventional incenter dialysis is practiced in the US, but that is a separate discussion in itself. At one point or another, every long term renal transplant patient I personally know has had a bridge of life from dialysis either before or after a renal transplant when they eventually fail and another is needed. Is dialysis fun? Absolutely not, but I do love the fact that it has given me nearly 4 years of life that I wouldn't have had without it. Yet I am daily thankful and grateful for people like Dr. Chris Blagg who continues to fight the battle for optimal dialysis 50 years after it became the first life saving treatment available for ESRD.
If someone wants to discuss the risks of long term dialysis, I would be equally forthcoming if anyone was interested in that as well. It is not a bowl of cherries either but for my circumstances, daily home dialysis is my best option. Having two prior cancer episodes both of which were completely cured surgically by being caught early, I would add that understanding cancer risk in the arena of renal disease is something that all renal patients should have an understanding of to simply foster lifestyles that reduce that risk in every way. For myself, the thought of dying from a metastatic melanoma gives me shudders where the thought of a quick sudden death from dialysis doesn't bother me in the least, although I am going to do all I can to avoid that as long as possible.
Having seen many patients die from both, the latter is much preferred to me even though none of us can predict what will eventually get us. I had no peace of mind about the renal transplant but because of undo pressure from every part of my medical team, I did complete the entire renal transplant work up which actually in one way saved my life since my early melanoma was found while it was nearly 100% curable after I scheduled a preliminary skin screening as part of this evaluation. How many patients get a full dermatological screening BEFORE a renal transplant? The last I checked, it was not part of the evaluation at my transplant center. Many transplant centers include annual or semiannual skin cancer screening after the fact, but I would be very interested to know how many people that have had transplants were seen by a dermatologist before the procedure.
So Ed, no scare tactics, but I am tired of the biased view that the media and almost all involved in renal transplant gloss over the very real risks in many instances., the MAYO notably excepted. If you believe misinformation about post transplant skin cancers is admirable, then so be it, it is not likely that I will change your mind. For those that want to know everything about their choices, then infections and cancer post transplant is part of the discussion as well as the very well documented benefits. I always advised my patients when they were considering difficult treatment choices to make sure they understood to the best of their ability what risks were entailed and were willing to accept developing those risks should it happen. Many people are not willing to accept the increased risk of cancer that does go with renal transplant. Others hate dialysis so much that they are willing to accept those risks. That is a personal choice, but who is served by pretending that those risks do not exist?
For Sax-O-Trix who started this thread, all I can say is you are not alone in your concern over the cancer risk. I was uncomfortable with the cancer risk while I initially considered renal transplant under very high pressure from my medical team and it became unbearable once I developed an early melanoma. In contradistinction to the entire renal transplant culture here in the US, you actually have other renal replacement options that for some like myself are preferable to transplant. Dr. Chris Blagg has stated publicly in the past that at his age, he would reject renal transplant as his first choice and instead choose daily home dialysis performed nocturnally should he develop renal failure. Of all the people in my medical team, I have only met one other person who would likewise choose dialysis at home over transplant. With evidence of equal survival as cadaveric transplant, it is a viable alternative despite the incredible media bias to the other. Which ever choice you make, know and understand your options. If you are unable to do daily dialysis, then the data is clear that you will have a better chance of long term survival with renal transplant than conventional US incenter dialysis if you have the usual cancer risk factors and no contraindications.
Some people cannot tolerate the discipline needed to do daily dialysis and that puts the decision back to the renal transplant option for many people. For me with my medical back ground and all the years doing medical procedures, I feel a little bit at home so to say since it has been part of my professional life for so long. It is a stressor on my wife who assists me but up to this point she has been able to cope well with it and she is good at being my assistant. My wife is in complete agreement with me over my decision not to go for renal transplant at this time until the time they are able to significantly mitigate the cancer risks. If I developed access problems or other dialysis related complications, I might reconsider that decision, but at this time my dialysis has been going well and I will continue. I am certain that I am not the only renal patient who has made a similar choice yet you will NEVER hear their voice in the renal transplant biased media. I suspect that there may be some people even here on IHD that don't want the bother of having people second guess their choice to not opt for a transplant. In some ways I am actually grateful for my melanoma since I no longer get nearly 100% of people telling me how stupid I am not to have a transplant. Once again, so be it, but any thinking person that knows what is truly entailed in the transplant option should at least pause for a moment or two before preceding and be willing to accept the consequences either way. For those that decline a renal transplant and choose daily dialysis, I hope you have thick skin because you will not hear the end of the criticism of your decision. I would only encourage you to be comfortable with what ever you or any one else chooses to do. There are risks and benefits no matter which option is chosen.
I continue to wish you the best Sax in what ever you decide to do.
God bless,
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Dr Stanley Shaldon just placed a comment over at DSEN on the longest living renal patient in the world. I think that Dr. Shaldon, the first to use nocturnal dialysis back in 1963 sums it up so well:
Allow me to make a personal comment on the Robin Eady Saga. In 1963, his father came to see me at the Royal Free Hospital as his son had end stage renal failure. We were full and I recommended that he tried to get into Seattle. Scribner took him on temporarily on and then he went to Lionel Mcleod in Canada until we had a place for him at Royal Free Hospital. I persuaded Prof Butterfield to take him on as a medical student at Barts where he qualified in medicine and also married my best dialysis nurse and went on home HD.He received an unrelated cadaver kidney transplant in 1988 after 25 years of dialysis. He qualified in medicine and became a renown dermatologist and is now retired and has several grandchildren. Having known him both as my patient and later as a personal friend, I would characterise this unusual man as having an extremely strong desire to survive and lead as normal a life as possible. His story should be held up as what an individual can achieve with a severe and life threatening handicap if he has a strong enough motivation to live.
Stanley Shaldon
Posted by: Stanley Shaldon. MA.MD.FRCP | July 10, 2010 at 06:28 PM
http://www.billpeckham.com/from_the_sharp_end_of_the/2010/06/dr-robin-eady-to-receive-the-clyde-shields-distinguished-service-award.html?cid=6a00e54fc659eb88340133f2339537970b#comment-6a00e54fc659eb88340133f2339537970b
The will to live and doing what is needed to survive is probably the most important characteristic to consider. Dr. Eady survived for 25 years before having his transplant back in 1988. What a testimony to the will to live and thrive. Perhaps that is the most important component. Once you have that, all of the many renal replacement options take a second place.
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Cariad,
You are so right on with your comments on this thread. There are a couple of people on here who are so determined to scare the hell out of people that are considering a transplant it is truly amazing. The only other time I have encountered this is the manager of the Fresenius clinic I was treated at. Maybe the three of you should start a new sight called "I love dialysis" because I actually heard the manager use that phrase.
Ed
Oh, Ed, I hear you. And thanks for the support. I agree with you that this discussion is taking on more of a "one team against the other" feel that is so unfortunate. We are a better support group than this.
Peter, I read your first message in which you quoted me, but sorry, your second is absolutely too long for me to wade through. That's not meant as criticism, just personal circumstance. Right now, if I were to ask a risk question it would be "Is having children worth the risk of getting a child who tantrums at least twice a week?" (OK, yes, it is worth it. :))
I really challenge anyone to find somewhere where I said that there was no serious risk of skin cancer in transplant patients. You seem to have missed the point of my talking about my grandmother - I had been saying I have zero family history of skin cancer, and now I am correcting myself by saying I have a 92 year old grandmother who was diagnosed with basal cell carcinoma. It was a lighthearted comment, not meant to be used as evidence of anything. The timing of my mother's call and this discussion made me laugh.
My transplant centre went over the risks ad nauseum, and it was not Mayo. I have been hearing about the risk of skin cancer from every random nephrologist since the early 1990s, so I don't agree with you that this is unique to Mayo. Far, far from it. I have had my garish and painfully protracted death foretold by plenty of doctors. Apparently, believing I am healthy and being confident that I can manage with whatever life throws at me is considered a form of arrogance to some doctors, because they have certainly tried to scare me into blindly following their demands. Unsuccessfully, may I add.
The original question from Sax was is a transplant worth the risk of cancer. This is obviously going to boil down to a constellation of personal factors unique to each individual. For me, the answer is ABSOLUTELY. Thirty four years with almost zero problems and little in the way of maintenance requirements? Yes, I would say that beats dialysis. Is the risk of entirely different types of cancer worth it to me to be in a tolerance trial in which I have every reason to believe that I will be off all meds within eight months? Yes, a thousand times, yes. Cadaver donor transplant and dialysis may offer the same success rate, however, Sax has potential live donors, and I had a live donor. People who have had transplants on here and are speaking from personal experience have overwhelmingly stated that the risk was worth it to them. I think this is wonderful news, since I would hate to hear that anyone regretted their choice, no matter which way they decided to go.
You're right, Peter, there is little reason to get upset about this. If one were to go back and read through this discussion from the beginning, one might note that I brought up skin cancer by repeating what I have been told for almost two decades. It seems to me that the people here know about the risk of skin cancer, so I see no reason to belabour the point.
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Cariad,
You are so right on with your comments on this thread. There are a couple of people on here who are so determined to scare the hell out of people that are considering a transplant it is truly amazing. The only other time I have encountered this is the manager of the Fresenius clinic I was treated at. Maybe the three of you should start a new sight called "I love dialysis" because I actually heard the manager use that phrase.
Ed
Oh, Ed, I hear you. And thanks for the support. I agree with you that this discussion is taking on more of a "one team against the other" feel that is so unfortunate. We are a better support group than this.
Peter, I read your first message in which you quoted me, but sorry, your second is absolutely too long for me to wade through. That's not meant as criticism, just personal circumstance. Right now, if I were to ask a risk question it would be "Is having children worth the risk of getting a child who tantrums at least twice a week?" (OK, yes, it is worth it. :))
I really challenge anyone to find somewhere where I said that there was no serious risk of skin cancer in transplant patients. You seem to have missed the point of my talking about my grandmother - I had been saying I have zero family history of skin cancer, and now I am correcting myself by saying I have a 92 year old grandmother who was diagnosed with basal cell carcinoma. It was a lighthearted comment, not meant to be used as evidence of anything. The timing of my mother's call and this discussion made me laugh.
My transplant centre went over the risks ad nauseum, and it was not Mayo. I have been hearing about the risk of skin cancer from every random nephrologist since the early 1990s, so I don't agree with you that this is unique to Mayo. Far, far from it. I have had my garish and painfully protracted death foretold by plenty of doctors. Apparently, believing I am healthy and being confident that I can manage with whatever life throws at me is considered a form of arrogance to some doctors, because they have certainly tried to scare me into blindly following their demands. Unsuccessfully, may I add.
The original question from Sax was is a transplant worth the risk of cancer. This is obviously going to boil down to a constellation of personal factors unique to each individual. For me, the answer is ABSOLUTELY. Thirty four years with almost zero problems and little in the way of maintenance requirements? Yes, I would say that beats dialysis. Is the risk of entirely different types of cancer worth it to me to be in a tolerance trial in which I have every reason to believe that I will be off all meds within eight months? Yes, a thousand times, yes. Cadaver donor transplant and dialysis may offer the same success rate, however, Sax has potential live donors, and I had a live donor. People who have had transplants on here and are speaking from personal experience have overwhelmingly stated that the risk was worth it to them. I think this is wonderful news, since I would hate to hear that anyone regretted their choice, no matter which way they decided to go.
You're right, Peter, there is little reason to get upset about this. If one were to go back and read through this discussion from the beginning, one might note that I brought up skin cancer by repeating what I have been told for almost two decades. It seems to me that the people here know about the risk of skin cancer, so I see no reason to belabour the point.
Dear Cariad, you are one of the fortunate survivors and you have really hit the nail on the head with the tolerance issues. If they are ever actually able to accomplish that task, then you would be able to drop the immunosuppressants which are the major factor in the side effects of renal transplant. If they are able to do that then renal transplant begins to jump into the cure category instead of the treatment option category. They have no easy task before them. And yes, it is a personal choice for all to consider.
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Dear Hemodoc,
Most of your comments reflect your opinion and experiences and I have no problem with that . I have said many times that everyone has to make the choices that are best for them. But I do have a problem with your comment that those who can't tolerate dialysis lack the "discipline required". I find that comment uninformed and unprofessional.
Ed
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Dear Hemodoc,
Most of your comments reflect your opinion and experiences and I have no problem with that . I have said many times that everyone has to make the choices that are best for them. But I do have a problem with your comment that those who can't tolerate dialysis lack the "discipline required". I find that comment uninformed and unprofessional.
Ed
Dear Ed, you mistake my point which was to do daily dialysis at home requires a mindset and the discipline to do that. Some people and some partners don't share that type of discipline or perhaps a better word is tolerance of the grind of dialysis. It is not always easy to do daily dialysis. In fact, one of the aspects of home dialysis evaluation is whether the candidate possesses that type of discipline and tolerance. May comments were not in the least uninformed or unprofessional.
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Dear Hemodoc,
Most of your comments reflect your opinion and experiences and I have no problem with that . I have said many times that everyone has to make the choices that are best for them. But I do have a problem with your comment that those who can't tolerate dialysis lack the "discipline required". I find that comment uninformed and unprofessional.
Ed
Ed,
I find the latter part of your response to Hemodoc to be misleading and your labelling of him as "uninformed and unprofessional" as offensive.
He did not say that "those who can't tolerate dialysis lack the discipline required," as you claim.
Rather, he said that "Some people cannot tolerate the discipline needed to do daily dialysis." - (note the use of the word "some.") - a proposition with which, I would add, I am in full agreement.
There is more than one carer who posts to IHD, expressing their frustrations with their partners who refuse to follow the required regime in dialysis and whose health suffers accordingly, to their great distress. I am sure they would have no argument with Hemodoc's statement either.
Henry
Thank you Henry for your comment. To some, for some reason, the truth is simply offensive. Not much I can do about that.
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I stand by everything I said and the last two posts just prove my point. Im done with this thread. There is plenty of intelligent discussion to read and respond to on ihd.
Ed
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The risk, benefit and alternative discussion for renal transplant needs to include daily dialysis outcomes that are equal in survival to cadaveric transplant. I suspect very few patients will hear that in their renal transplant talks. I understand a couple of folks had very in-depth discussions at the Mayo, but that is the Mayo and not the ordinary centers doing the transplants nor more importantly the local neph who refers his patients to the transplant center. For some, the outcome will be the choice of daily dialysis and some transplant. Yet why get upset about the truth of transplant that these things are so. We all have renal disease on this site and we all must live with the choices we make, no one gets out of renal disease with ESRD without some degree of risk no matter the renal replacement therapy choice. It is not a matter about what is right and wrong, but instead about knowing and understanding specifically what the risks are and making the best choice possible with that information. The choices often are not easy to make but to make them we truly have to first understand them.
I agree with this comment in general. My only real comment to add is that you suggest the risks needs to be taken into account when matched against those doing daily dialysis of some form or another. Or rather you say the thsee folks need to be included in the stats - absolutely - unfortunately daily dialysis(you mention home dialysis in another response, so I presume this is what you generally mean, eg: NxStage or similar). Not everyone has access to daily Dialysis. I know if I could, I'd be all over that, but it's simply not an option for me. I can not dialyize at home, and my unit does not offer nocturnal in-centre dialysis (in fact I do not think anyone in my city offers it, though I could be corrected on that). There have been rumblings that one of the senior docs here, soon to take over the top job, wants to introduce it, but I think the unit staff are kind of against that idea(for obvious reasons). If I could I'd jump on board to do nightly nocturnal!
I think you make the point well that not only are outcomes going to vary by individual based on their choices, but choices will be based very much on individual needs and circumstance.
The bottom line, which I think everyone here agrees on, is that whichever way you go, there are risks. Doing your own "cost/benefit analysis" will yield a different result for each individual weighing up potential pros and cons of each treatment option.
I am the sort of person that is happy to adhere to protocols required to make the most of a transplant outcome... for me, the "cost" of covering up/staying out of the sun and being careful to avoid infection and the like is worth the freedom allowed by a transplant (and yes, i can drink the 2L+ a day of water!). For others, staying on dialysis may provide a better outcome. Eveeryone's different, and our decisions should be respected if made with a proper amount of information and understanding to back them up. I think it would be foolish to choose either way without understanding all the choices and implications of those choices. In this regard, this very thread is helping untold numbers of readers make their own decisions.
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The risk, benefit and alternative discussion for renal transplant needs to include daily dialysis outcomes that are equal in survival to cadaveric transplant. I suspect very few patients will hear that in their renal transplant talks. I understand a couple of folks had very in-depth discussions at the Mayo, but that is the Mayo and not the ordinary centers doing the transplants nor more importantly the local neph who refers his patients to the transplant center. For some, the outcome will be the choice of daily dialysis and some transplant. Yet why get upset about the truth of transplant that these things are so. We all have renal disease on this site and we all must live with the choices we make, no one gets out of renal disease with ESRD without some degree of risk no matter the renal replacement therapy choice. It is not a matter about what is right and wrong, but instead about knowing and understanding specifically what the risks are and making the best choice possible with that information. The choices often are not easy to make but to make them we truly have to first understand them.
I agree with this comment in general. My only real comment to add is that you suggest the risks needs to be taken into account when matched against those doing daily dialysis of some form or another. Or rather you say the thsee folks need to be included in the stats - absolutely - unfortunately daily dialysis(you mention home dialysis in another response, so I presume this is what you generally mean, eg: NxStage or similar). Not everyone has access to daily Dialysis. I know if I could, I'd be all over that, but it's simply not an option for me. I can not dialyize at home, and my unit does not offer nocturnal in-centre dialysis (in fact I do not think anyone in my city offers it, though I could be corrected on that). There have been rumblings that one of the senior docs here, soon to take over the top job, wants to introduce it, but I think the unit staff are kind of against that idea(for obvious reasons). If I could I'd jump on board to do nightly nocturnal!
I think you make the point well that not only are outcomes going to vary by individual based on their choices, but choices will be based very much on individual needs and circumstance.
The bottom line, which I think everyone here agrees on, is that whichever way you go, there are risks. Doing your own "cost/benefit analysis" will yield a different result for each individual weighing up potential pros and cons of each treatment option.
I am the sort of person that is happy to adhere to protocols required to make the most of a transplant outcome... for me, the "cost" of covering up/staying out of the sun and being careful to avoid infection and the like is worth the freedom allowed by a transplant (and yes, i can drink the 2L+ a day of water!). For others, staying on dialysis may provide a better outcome. Eveeryone's different, and our decisions should be respected if made with a proper amount of information and understanding to back them up. I think it would be foolish to choose either way without understanding all the choices and implications of those choices. In this regard, this very thread is helping untold numbers of readers make their own decisions.
Dear RichardMel, I wish none of us on IHD had any need to know these issues, but sadly we do. I am thankful that we have enough choices today that we can actually argue about them. What a concept compared to the folks in the 1950s who had the hope of treatment options but most didn't live long enough to get the choices we have today. In that I do love dialysis and all that have seen even one extra day due to a machine should be eternally grateful for the contributions of men such as Dr. Scribner for instance. Renal transplant in the right patient is often the best option and I wish you the best in transitioning to becoming a urinator once again. It is quite sad that optimal dialysis is not universally available. That is the mission of DSEN to make the awareness of the daily dialysis option to all who might benefit from this life saving technology which is equal to cadaveric transplant in survival. You also have the take home message of mitigating any cancer risks by lifestyle choices.
One of the reasons that I wrote the post last year or I guess it was in 2008, was after talking to a fellow dialysis patient while I was incenter who had a son who was going to donate a kidney. She was a horse lover in the middle of the Mojave desert and even though she had already been seen and approved at the University program, she was completely clueless on how dangerous the sun would be to her after her transplant. Perhaps she simply didn't want to know and didn't listen when she was told, but she was quite shocked to hear how deadly the sun could be after transplant. I have spoken to several patients in various stages of the transplant evaluation and none to date understand this risk. I believe it is much better to enter into a treatment option with eyes wide open so that you maximize the benefits and minimize the risks.
Once again, RichardMel, I wish you the best.
God bless,
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Not to be a party-pooper here, but... I am having serious second thoughts about getting a transplant, I guess I am just plain scared silly. After reading the stats on the rate of cancer for all types of transplants and a comment from my GP about "what I am getting myself into", I am wondering if PD wouldn't be a better option. The rate of survival is really low for cancer patients on immuno drugs and the chances getting cancer are at least 2.6 times the average. I guess a certain virus (Barr?) causes many of the cancers seen in post-transplant patients and you can be teested to see if you have the anti-bodies. If you already have the anti-bodies going into the transplant, your chances are lower of actually getting certain types of cancers from what I have read. I think I may request the blood test.
It seems that people can survive for many years on dialysis and if you don't end up with an infection, PD seems like an acceptable alternative (but then again, I am not there yet so I don't know squat about the daily grind of PD or HD.)
Any words of wisdom?
Thought I would repost the orginal question. We may have lots Sax during the lengthy posts about who may have the absolute answer regarding cancer and transplants. Richard, you are so right---following simple suggestions can help. Thank you for encouraging Sax.
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I agree with what many other people have already said in this thread. At the end of the day, it comes down to a personal preference. You should choose the treatment option that best fits your life. I believe that it all comes down to a personal decision on your part. You can ask others for advice, but you need to choose your treatment based on your own circumstances.
I have been on HD, and I HATED it. I'm on PD now, and while it is better than HD, it still sucks. Am I terrified about getting a transplant? Of course. But that's not going to stop me. I can't imagine being on dialysis for the rest of my life. But maybe that's because I'm only 16.
The most important thing, at least in my opinion, is to be true to your own interests. What is the best thing for you?
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I have known for a long time about the increase of skin cancer risk post-transplant, so imagine my surprise when this was not even discussed at my pre-transplant evaluation. I have wondered for months why a visit to the dermatologist was not part of the pre-transplant protocol. They made me get my gallbladder taken out, but they never once checked my skin or had me visit a specialist (but I had to see a dentist???). Seems to me that if you are worried about skin cancer post transplant, then make an appt with a dermatologist and then see him/her regularly. I am hoping that other transplant units are better than mine is at reviewing all of the risks of transplantation. I've done my own research, but not everyone has internet access or is well enough to do the research. I'm not on dialysis yet, but I've had to change my lifestyle in many ways already, and I am prepared to do what it takes to get a transplant and to protect myself in any way I can from infection or any other risks that go with it. That's my choice. I've worked hard to keep myself as healthy as possible, and I will continue to do so, but not everyone can do the same.
This discussion reminds me a bit of the "mommy wars" in that we all make our decisions in the best way that we know how, but we don't like to have to defend those decisions because that can lead to second guessing, which can psychologically undermine us at a time when we need to feel confident about our choices. We need to remember that while discussion is healthy and necessary, we must also respect the choices that our members make for themselves and to do our best to support them.
My neph came right out and told me that NxStage required commitment and determination, but if you can do it, then NxStage gives good clinical results, which is just what I want. I can do this...I know I can....but again, not everyone can. So, I will start out on NxStage but continue to hope for the cahnce for a transplant.
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The most important thing, at least in my opinion, is to be true to your own interests. What is the best thing for you?
But it can be really difficult to ascertain what the best thing is. Based on your pre-dialysis research, you think, "OK, this is what I want to do...this is what will be the best thing for me.", but what if that turns out NOT to be the best thing for you? What if my DH decides he can't cope with helping me with NxStage? I am a much more disciplined person than he is...what if, despite his very best intentions and after a finite period of time, he just can't hack it? You know what they say about best-laid plans...
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The most important thing, at least in my opinion, is to be true to your own interests. What is the best thing for you?
But it can be really difficult to ascertain what the best thing is. Based on your pre-dialysis research, you think, "OK, this is what I want to do...this is what will be the best thing for me.", but what if that turns out NOT to be the best thing for you? What if my DH decides he can't cope with helping me with NxStage? I am a much more disciplined person than he is...what if, despite his very best intentions and after a finite period of time, he just can't hack it? You know what they say about best-laid plans...
I think Bo is echoing what most of us have said and agreed upon. MM, if your husband starts to waver in his commitment, after you two are all trained up, you could basically do it all on your own. Yes, even self-cannulation! (*horror movie scream*) And I know you would do what needs to be done if that scenario arose. Really, it seems the NXstage partner is most crucial in emergency situations, which hopefully will not crop up in your case. A wonderful IHD member who used to post on here all the time was her husband's partner, and she used to swim while he was on the machine - she just carried a radio out with her so that he could communicate with her in the event of a problem. We have at least two members (Meinuk and Bill Peckham) who do/did NxStage without a partner.
Aside from that, if it's the wrong choice for you, try a different option. Perhaps you'll find that you would prefer in-centre nocturnal because you want to sequester dialysis in a place outside your home. I think most people (you included) have a good sense of what will work for them not only medically, but also psychologically and logistically.
Bo, you are such a well-spoken 16-year-old. I think there is little doubt that transplant is the best option for someone so young. Now you have some idea of the risks with the medications, and hopefully you will always remember your sunblock. I am so fanatical about sunblock and telling my kids about the dangers of overexposure to the sun that my 7-year-old came home in tears a few weeks ago. He had got his first-ever sunburn. It did not hurt so much, he just had really taken my warnings to heart - I tell them both that sunblock is necessary because they could get really sick in later life if they are not careful now. I think he thought he was facing certain death over this one mistake. I had to do a lot of clarifying, and it was heartbreaking to see how terrified he was.
I have known for a long time about the increase of skin cancer risk post-transplant, so imagine my surprise when this was not even discussed at my pre-transplant evaluation. I have wondered for months why a visit to the dermatologist was not part of the pre-transplant protocol. They made me get my gallbladder taken out, but they never once checked my skin or had me visit a specialist
Interesting observation. I was not sent to a dermatologist for any eval, but this probably has to do with the fact that skin cancer is more a post-transplant concern than a pre-transplant concern. Oh, but wait, I was post-transplant, so you'd think they would have checked even more? Hmmm, perhaps I'll ask them next time why this was not part of their eval. Doctors tend to assume I already know everything when it comes to transplant, so I am not surprised that risks of long term immunosuppresants were not mentioned to me. I also think that you would have been sent to a dermatologist if you had mentioned a family history of skin cancer. They did ask for a thorough family history, right? I (stupidly) admitted to having a relative who died of colon cancer, so it was off to the colonoscopy I went. (The surgeon tried to make me feel better about it by saying 'I sent myself to one when I was only 41, so I'm not trying to make you do tests that I won't undergo myself.' I was so annoyed at the pre-transplant paranoia that I walked into every cancer test saying 'I don't have this cancer, but they're making me do this, so here I am!' Guess I should stop tempting fate.... but where's the fun in that? :rofl;)
Dear Cariad, you are one of the fortunate survivors and you have really hit the nail on the head with the tolerance issues. If they are ever actually able to accomplish that task, then you would be able to drop the immunosuppressants which are the major factor in the side effects of renal transplant. If they are able to do that then renal transplant begins to jump into the cure category instead of the treatment option category. They have no easy task before them. And yes, it is a personal choice for all to consider.
Thanks for the comments, Peter. Harvard has of course accomplished this already in a limited number of patients (4 out of 5 are living med-free without rejection) and you may remember the TIME magazine article from January 2007 on that study, which I believe began in 2002. Stanford has also accomplished it for several patients. According to my surgeon, he presented my case at a recent transplant conference, and he said "yours is the one that will make them fall off their chairs - a re-transplant with an unrelated donor". I was looked over by many dermatologists after the transplant, but that was to detect GVHD, not skin cancer. Let's hope that if they had seen something suspicious outside the realm of GVHD, they would have let me know.
I am so excited by this trial that I want to tell the world about my experience, but of course, not everyone can participate in one of these trials and not everyone has the option of transplant, so I worry about fostering jealousy or coming off like I am bragging. I have certainly done my time on the meds, though. More and more centres are doing these trials and I do hope that if someone is interested, they will look into it. The risks are pretty scary, but I promised the surgeon that I have a really high risk tolerance and I am trying to live up to that claim.
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Cariad,
I am not sure why you are so offensive with my citations of scientific study results. A quote from a scientific study would give a better support than just arguing with personal opinions. It is not difficult to accept that the cancer risk per year increases over time after transplant, as supported by many studies. As to the linear increase of total cancer risk within a given period as a function of time, a simple example can illustrate it: suppose 1% risk for the first year, 1.05% for the second year, with 1000 patients, there will be about 10 patients with cancer during the first year, and another 10.5 patients with cancers during the second year. Total risk during these two years is (10+10.5)/1000=2.05%. One can work this math forward to 20 years, and relative risks within 20 years are more than 20 times of the risk within the first year. You can see why I said you were confused with risk per year and total risk within a given period. You forgot that when one increases the time, the total risk increases even with a constant risk per year. It is good for you that you do not have cancer. But one patient does not mean anything. I personally know several transplant patients within 6 years of transplant, and none of them have cancers. But I also know some transplant patients 15 or 20 years after transplants and some of them are struggled with skin cancers. My personal observations are basically the same as reported by these scientific studies I cited.
I do not want to scare anyone about transplant. As I stated repeatedly that transplant is my first choice. Whether to have a transplant depends on the patient's risk weighting. Even the cancer risk is much higher than I thought from a simple google search, my weighting of cancer risk is lower than other dialysis risks. The biggest reasons are quality of life with transplant and that I consider any years in my future life after 20 years is a bonus.
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Cariad, I've had the "luxury" of knowing for quite a long time that I'd be facing dialysis one day, so I think my choice is more informed than many people's. I intend to learn to self-cannulate since I don't have a particular horror of needles. I refuse to do PD because I refuse to give up swimming. That may be a silly reason to discount a certain modality entirely, but I've given up too much already! I understand that NxStage can be done very successfully with minimal help and that a partner is valuable mostly in emergency situations, so I personally will be able to just get on with it if DH wimps out. But other people may need more help than I will.
Believe it or not, no, the transplant team did not ask about a family history of skin cancer. Both of my parents had it (the curable kind), but then again, both of my parents lived their entire lives in the South and had never once used sun screen. I lived a long time in England where the sun does not shine ( :rofl;), and once I returned to the US and was put on cyclosporine, I use sun screen religiously, so my risk is, hopefully, lowered.
I'm sure you know that I am so thrilled about your clinical trial, and I am grateful that you chose that particular path. You've done all of us a great service, and you are right in saying that few of us could have/would have made the same choice for ourselves. Far from bragging, your posts about your experience are testaments to your generous spirit, and I thank you so much! :cuddle;
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I am aware of cancer risks regarding immunosuppressive drugs.
I am fifty, so I am perfectly willing to take the long-term risks. However, the major factor in my decision making to try for a transplant was in the way my kidney disease has effected my family.I have lived with stage 4 kidney disease for nine years now and in that time I have seen how this disease has affected everyone in my family, even though I have tried my best to do otherwise. Plus, it gets harder the sicker I become. My two children, now 19 and 21 years old have spent more than 1/2 their lives living with my kidney disease and I see how it affects them. My husband of 21 years, whom I've loved for 30 years, has experienced our lives change for the worse because of this disease.I would never dream of expecting him to stay home everyday to partner with me in NxStage, though I know he would. I cannot imagine also putting my family through years of me being on dialysis when I know what they would like so much for me is to have the freedom a kidney transplant could provide for us all. I would once again be able to go on long hikes, trips, and vacations. I would once again be able to stand in the kitchen and make their favorite meals ,take my daughter shopping for hours on end, go to car shows with my husband and son. Travel every summer. I will take the risk of cancer because the way I see it, dialysis has it's own separate kinds of risks, yet a transplant will at least allow more freedom. I also have 2nd thoughts about a transplant. Ultimately, I will get through my fears and I will do it for my family. But then again, you're listening to someone who has already survived Goodpasture's Disease. After that, cancer sounds survivable to me anyway.
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Sunny, you raise a very good point, one that I have discussed with my husband. We have to remember that our decisions affect those that love us and live with us. I have repeatedly asked my husband if he was sure he wanted to do NxStage with me. At first, I had decided that I'd do in-center because I wanted to spare him the hassle. But the more we discussed it, I realized that up to now, he has felt so helpless. All he has been able to do is to listen to me rant and rave about the unfairness of it all. While his emotional support has been invaluable, he is an action man; he does not feel like he is truly contributing to my welfare unless he is ACTIVELY doing something, and for him, that something is helping me with NxStage. This chance to DO something tangible is important to him, so I had to realize that my heroic intention of going it alone was rather selfish.
Your thoughts about how your family will benefit from transplant are valuable and worth remembering. Thanks for this point of view. Our choices are not made in a vacuum.
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Cariad,
I am not sure why you are so offensive with my citations of scientific study results. A quote from a scientific study would give a better support than just arguing with personal opinions. It is not difficult to accept that the cancer risk per year increases over time after transplant, as supported by many studies. As to the linear increase of total cancer risk within a given period as a function of time, a simple example can illustrate it: suppose 1% risk for the first year, 1.05% for the second year, with 1000 patients, there will be about 10 patients with cancer during the first year, and another 10.5 patients with cancers during the second year. Total risk during these two years is (10+10.5)/1000=2.05%. One can work this math forward to 20 years, and relative risks within 20 years are more than 20 times of the risk within the first year. You can see why I said you were confused with risk per year and total risk within a given period. You forgot that when one increases the time, the total risk increases even with a constant risk per year. It is good for you that you do not have cancer. But one patient does not mean anything. I personally know several transplant patients within 6 years of transplant, and none of them have cancers. But I also know some transplant patients 15 or 20 years after transplants and some of them are struggled with skin cancers. My personal observations are basically the same as reported by these scientific studies I cited.
I do not want to scare anyone about transplant. As I stated repeatedly that transplant is my first choice. Whether to have a transplant depends on the patient's risk weighting. Even the cancer risk is much higher than I thought from a simple google search, my weighting of cancer risk is lower than other dialysis risks. The biggest reasons are quality of life with transplant and that I consider any years in my future life after 20 years is a bonus.
You know what, forget it.These examples are silly and I don't wish to continue fueling it. This ScienceDaily summary only deals with melanoma. 3.6 times a really low percentage is still a really low percentage. The incidence of melanoma is approximately 60,000 per year in the US, or .02% of the population. This includes everyone, immunosuppresed or not. Even if we just separate out the transplant recipients and multiply the risk by 3.6 overall, we have a .072% chance of contracting melanoma on average. Talking about risk increasing over time, my baseline risk will be very different to a white, male, 60+ New Zealander who takes no sun precautions. Your numbers make no sense since you continue to look at the full 1000 while not accounting for the fact that new incidences of melanoma may strike the same person twice, or many times. The article you posted acknowledges how difficult it is to talk about statistics and risk with such rare events.
The ScienceDaily article goes on to state that women do not see an increase in risk with age, and their risk is "significantly lower" than that of men, especially caucasian men. This risk is just a rough average - you must take your own situation into account if you really want to stop needlessly scaring yourself. Jie, I don't know your race nor your age, I do know you are male but that you also reside in Alaska. (My mother's native land....) You also are aware of the risks and can take precautionary measures. I would say your risk is pretty darn low.
Here is a pretty good article that broadly discusses skin cancer risks across all solid-organ transplants, and it acknowledges that heart transplant patients are at far greater risk than kidney transplant patients (their guess it's down to greater immunosuppression and higher age at time of transplant.) This is an actual scientific review article, not a summary written by a layperson. http://dermatology.cdlib.org/DOJvol8num2/reviews/squamous/wu.html
It supports what Hemodoc was saying about greater risk of squamous cell carcinoma (SCC in the article) than melanoma, which was actually news to me. Further, it supports both Hemodoc's and MooseMom's observations that recipients are not receiving proper dermatology screening and education, though almost half showed no interest in screening for skin cancer! It discusses greater risk depending on location of the recipient, so I am now a bit more worried about our Australian members, as this was used as an example of a high-risk area. It also discusses advances in treating and preventing cancer, including using tretinoin, a new and very popular anti-aging cream. I am going to see if I can get this cream on insurance. Why not? It does seem to lower the risk of certain lesions that correlate with increased risk of skin cancer.
Since we are talking about living longer, skin cancer or not, let's look at their conclusions on mortality:
SCCs in transplant patients are much more aggressive and deadly.[78,79] They tend to recur locally even after surgical excision.[80] Cancer that spread to lymph nodes occurred in 5.8% of patients. Seventy-five percent of these were caused by SCC.[69] Of the 5.1% of transplant patients who die from skin cancer, 60% had SCC and 33% had melanoma,[69] which represents a 10-fold increase in mortality from SCC.[81] This is in stark contrast to the mortality of skin cancer in the general population, where melanoma is the most common cause of death.
Only 5.1% of transplant patients die from skin cancer. If this is true, I think this is pretty good news. Turn it around and you could say you have a nearly 95% chance of NOT dying from skin cancer as a transplant recipient. Is the risk worth it, as Sax originally asked? To me it certainly is.
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Okay... I now have more information than I did when I originally posted. This is good. I did discuss the cancer risks with the neph and his resident last week, they did confirm that skin cancer was a concern as well as other solid organ cancers. Noted that a Tx patient gets checked over every year by a dermatologist and that most of the lesions are caught early enough to take care of them. BUT, did they tell me to get screened now??? NO. I am going to though, just to have a baseline to go by with the few small freckles/moles that I do have.
I have decided I am going to go through the process of being ready for a transplant as planned, because who knows, my donors may not pass the evals and I may want to be listed with UNOS just in case I find that dialysis is just too much.
I wonder if having a preemptive hysterectomy is in order... One less thing to worry about.
Thanks for all of your opinions and observations!
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Okay... I now have more information than I did when I originally posted. This is good. I did discuss the cancer risks with the neph and his resident last week, they did confirm that skin cancer was a concern as well as other solid organ cancers. Noted that a Tx patient gets checked over every year by a dermatologist and that most of the lesions are caught early enough to take care of them. BUT, did they tell me to get screened now??? NO. I am going to though, just to have a baseline to go by with the few small freckles/moles that I do have.
I have decided I am going to go through the process of being ready for a transplant as planned, because who knows, my donors may not pass the evals and I may want to be listed with UNOS just in case I find that dialysis is just too much.
I wonder if having a preemptive hysterectomy is in order... One less thing to worry about.
Thanks for all of your opinions and observations!
Sax, great to hear you are taking control of your treatment options. The more you learn, the more involved you can become in your own care decisions. If nothing else, this makes your medical team offer more detailed and precise information which I personally don't believe can ever hurt. Keep your options open as you describe is absolutely the right way to proceed. If we could foreknow the future and what is the best way to go ahead of time, that would be easy, but we simply can't predict that. All we can do is make the most informed decision we can and be willing to accept what ever happens.
I fully support your request to have a skin CA screen done before your full evaluation is completed. Once again, learn, learn, learn as much as you can about all of your options and at some point you will likely become more comfortable with one over the others. The take home message is there are several paths that you can take that should offer you an excellent chance of not only meeting your modest goal of 10 years but much beyond. The good Lord is in control of how much time any of us have, but for our own input, there are many modifiable factors that greatly improve our odds. Learn of them and put them to practice as best you can.
Once again, I wish you the best in all that you choose to do.
God bless,
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After following this discussion, I'm ringing around today to organise another skin cancer screen. I've had two already and both clear, but the last one was almost two years ago. I'm thinking I'm due for another one. Thanks for all the info that has motivated me to do this.
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The basic message is to detect cancers early. I echo Hemodoc's post. For the 10 years of survival goal set by Sax, either transplant or daily/good/optimal dialysis would work fine. As studies after studies show, the cancer risks during first several years after transplant is very low. For those transplant patients who having cancers, the mean time to first cancer is about 9 years. The most occurring skin cancers are not fatal if detecting and treating earlily. As Hemodoc mentioned, an optimal dialysis has very good survival rates, showed in Japan and Europe. The low survival rates of U.S. dialysis patients are partly due to the minimum dialysis used by most dialysis patients.
The big factor to choose transplant is quality of life as many posts indicate. For those transplant patients who survived more than 20 years, they already outlived most transplant patients. The high risk of cancers should not be a big deal. Some combinations of dialysis and transplant will reduce the cancer risks for the longtime transplant patients, then dialysis risks may pose problems to some patients. Knowing more about cancer risks will help patients to make a better decisions and decide a better weighting of different risks. There are so many studies out there on this issue, and it is not difficult to get good information about it.
I like Chook's ringing. For those transplant patients, don't forget to make such a ringing once year.