I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: News Articles => Topic started by: okarol on December 28, 2010, 12:13:15 AM
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Md. philosophy class gets a real-world question: Should professor give a kidney?
By Jenna Johnson
Washington Post Staff Writer
Thursday, December 23, 2010; 10:22 PM
In late August, students in Philosophy 380 at St. Mary's College of Maryland received an unusual assignment centered on this question: Should the professor donate a kidney to a stranger?
Organ donation, a subject ancient philosophers hardly could have imagined, often comes up nowadays in college courses because of the ethical implications of the many stunning breakthroughs of modern medicine.
St. Mary's professor Michael Taber wanted to push the topic a step further, making it personal instead of theoretical. He figured it would show students a connection between their education and the real world. He also was curious whether the discussion would change with the stakes raised.
"It's easy for philosophy seminars to get lost in the clouds," said Taber, 51. "I wanted them to take the readings and seminar discussions and apply it to a concrete decision."
In 2009, there were more than 13,600 kidney donors in the United States, federal data show, about 6,300 of them living and the rest dead. Meanwhile, more than 87,000 people are awaiting a kidney donation, which would enable them to forgo dialysis treatments and potentially add years to their lives.
Medical advances in the past 20 years have made it easier and safer for living donors to give one of their two kidneys. Still, most such donations are made to help a relative or close friend.
Taber first considered giving a kidney more than five years ago, after one of his students wrote a paper about the end of life and how varying definitions of death affect organ harvesting. Sometimes he would broach the possibility of donation in a class discussion. A few years ago, he talked about donation with his wife and took a blood test.
As the school year began, though, he had yet to answer several daunting questions: What did his family think? What risks did he face? Would he need that kidney in the future? Would this be an altruistic act or an egotistic one?
He asked his eight students in the seminar to study the subject, formulate a yes or no recommendation and write a paper explaining their reasoning.
In an initial discussion in October, the students mostly agreed that donating a kidney was an upstanding thing to do. But as talk shifted to their professor, the issue became more complicated.
The students realized, "Oh wait, this is a real thing. This isn't an exercise," said Lex Cosenze, a junior majoring in anthropology, philosophy and history. Although philosophy students sometimes like to debate whether to save a train of orphans headed toward a cliff or save one beloved person, Cosenze said, "you don't get something this huge in your day-to-day life."
Many St. Mary's students meet Taber through a first-year leadership program. Taber, who has taught at the public college in Southern Maryland since 1987, is known on campus as a friendly, fatherly mentor.
He looks the part: beard, glasses, jeans, a vest and hiking boots. Often, students can be found sitting in the funky, swiveling chair in his bookcase-lined office.
About half of the Philosophy 380 students were majoring or minoring in the subject. All were sophomores or juniors.
The group included a tattooed junior who doesn't like to gender identify and loves fantasy role-playing games; an artsy rugby player from a small farm town whose career plan is being a mother; an athletic economics major who plans to do international service work after graduation; and a bearded junior who wears sandals in winter and considered the entire project "pointless."
The students researched organ donation, studied Taber's family medical history and health insurance plans, and compiled questions for the professor to ask his wife. Late one evening this month, the students e-mailed Taber a 15-page paper.
The introduction stunned him: "We took a vote on whether the answer to donate should be yes or no, and found that if we were really the ones making the choice, then we would have to say no."
He reread it. The students repeatedly wrote that it was not their decision whether to make a donation. One student dissented, saying he hoped one day to save a life by donating a kidney.
But on the whole, the students argued they could not in good conscience advise Taber to donate because of the risks, albeit slight, of death or disfigurement.
The students wrote that being a live donor is "a morally good act, but it is not the opposite if someone chooses not to."
They added that people "have a moral obligation to themselves that must be considered before moving to donate pieces of their body."
Taber had not expected that response. Especially at a small liberal arts school with a reputation for social activism. And especially in a philosophy class.
"Students are unpredictable," he said, shaking his head. "I thought they all would have been on board."
He reflected and realized that this friction point was part of the learning experience.
On Dec. 9, he e-mailed the class: "Last night I read your Project Kidney paper, and I [was] impressed with its thoughtfulness. Today I re-read it, and I am impressed with its cowardice."
He raised several objections and questioned why they were squeamish about giving a recommendation. The next afternoon, the class gathered again.
One student stressed that all they could do was provide the professor with information to make his own decision. Another drew a diagram on the chalkboard to explain that the paper was written for Taber's "spectator self" and not for his "personal self."
"I don't think any of us could say, 'Go take your kidney out today,' and then you die on the operating table," Cosenze said. Later in the class, the student asked: "What's so compelling about this . . . that you are willing to take the risk?"
"We should help each other out whenever possible," Taber responded. He doesn't have billions of dollars to donate, he said, but is "packing an extra kidney" that could improve the quality of life for someone else.
The class ended. The semester ended. Taber still has not decided what to do.
The seminar answered many questions for Taber but raised another: If he does donate a kidney, how many of his students will be disappointed?
http://www.washingtonpost.com/wp-dyn/content/article/2010/12/23/AR2010122301922.html?tid=nn_twitter
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I'd love to be a student and indulge in theoretical ponderings.
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Judging only by what I've read here, it seems that there was one crucial element missing from the discussion, and that was what a kidney donation saves a patient from. If the class researched donation, why did they not research dialysis and the effects of kidney disease? If I was considering something as enormous as organ donation, I would want to know from what, exactly would I be rescuing someone? If I was saving someone from having to take 5 pills a day instead of just one, I probably wouldn't do it. The payoff wouldn't be worth the risk. But if I understood the horrors of kidney failure and the physical assault that is dialysis as practiced in the US, I'd be able to make a much more informed decision.
Why didn't that class go and visit a dialysis clinic? Why didn't they check out IHD?
That professor is a dunce...go sit in the corner.
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Oh, or how about this...how about the professor invites a college aged dialysis patient to come and talk to the class about how marvelous his life is on D and what a terrific future he has to look forward to while tethered to a machine!!! Oh, the places he will go!
"What's so compelling about this?", the students asked. Really? Really? What is so compelling about saving a human life, or at the very least, single-handedly altering the course of someone's existence? Oh my God, how can any rational, empathetic human being even ASK that question?
When I was 17 and a senior in high school back when dirt was new, a bloodmobile came to the school. I lied about my age, told everyone that I was 18 and donated blood. For years afterwards, I gave blood. I am no saint. I would lie there and fantasize about a bleeding patient being told by his doctor that he would live thanks to the blood I had donated, that today was his lucky day. Whether this was an egotistical or altruistic move on my part was entirely irrelevant...all that mattered was that a person's life was possibly saved.
How often do we exclaim "HERO" to those who have chosen to donate a kidney? They ARE heroes! To be someone's hero would be pretty compelling, I would think.
This is not to say that people who choose not to donate are evil or uncaring or desperately bad. But to have to ask "why should I give" shows a stunning lack of imagination.
OK, I'm now officially pissed off.
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Last point..I went over and looked at the original article because I wanted to add a comment, but unfortunately comments were no longer being accepted. So I read the ones that WERE there, and a common thread seemed to be that you should save your organs for people that you know, ie, they shouldn't go to "strangers". My answer to that is that no one needs to be a "stranger". It's easy to find someone who needs a kidney via all sorts of websites. Look at Jenna's donor...Jenna was certainly no "stranger" by the time she got her donor kidney.
That's it from me for now! :rofl; I'm sure plenty of people will disagree with me, but that's the nature of this topic.
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The professor is asking the wrong people. Ask people who have donated, there's your answer. Yes, ask the ones who have had bad experiences, too. Then decide how you want to live your life - in fear or following your own path. I think what's shocking is that the professor seems to have been staggered by their response - there are 8 students and at least one of them does not even want to be there.
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The professor is asking the wrong people. Ask people who have donated, there's your answer. Yes, ask the ones who have had bad experiences, too.
LOL...I was just about to post this very thing! If the professor wants his students to think about this is "real world terms", he made a mistake in leaving out a huge part of that real world, ie donors and dialyzors.
Good point, cariad.
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Drop him a note:
Michael Taber -- e-mail: mstaber at smcm dot edu
St. Mary's College of Maryland
18952 E. Fisher Rd
St. Mary's City, MD 20686-3001
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Thanks for the contact info! I've just sent him an email with a link to this thread. Perhaps he will visit IHD and tell his students to come and have a look, too. They can read about the experiences of our young members and see for themselves how difficult a road dialysis is. Maybe one of them will be a hero. Ya never know...
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Did he post the entire paper? I'd be interested to read it.
Study after study all show that the people who donate the most - time, money, effort, etc. are usually the people who have received charity in some form themselves. There is a tremendous trend to literally "pay it forward" in the US and elsewhere. One charitable act really can snowball into far reaching improvements. I'd be interested to know if they considered the good done to society as a whole.
I agree with his describing the students as cowards. They wouldn't make a concrete decision because they didn't want to deal with their own guilt if he makes the wrong decision. Great leadership skills they are learning in the so-called leadership program! :sarcasm;
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I think the article is likely not being terribly fair to the student who asked "what is so compelling about this"? First of all, there is a gap of who-knows-how-large in the quote. Secondly, I think this is a good question. Some people are just 'called' to actions, if you can forgive the semi-religious tone to that. For me, it was never renal disease, I wanted to work with African orphans or work with people going through suicidal episodes. I've done the latter but not the former. I could probably dig up a reasonable explanation for why I feel compelled to work in suicide prevention, but the African orphans part is admittedly left-field. (I don't even know that many people who have been adopted.) So, I've had similar questions "African orphans? Where did that come from?" I never got the sense that anyone was saying "what the hell is so worthwhile about devoting your life to orphans?" but more along the lines of "Can you explain what is drawing you to this as opposed to, say, Asian orphans? Or injured veterans? Or saving the whales? Or maybe even those transplant patients that you should have some feeling of kinship toward?" There are as many worthy causes as there are people on the planet it would seem, and many of them involve risk to ones life. So we must choose wisely.
That was just how that hit me. I have to say I would be horrified if I were at dialysis and a group of philosophy students came by, safari-style, to check out the poor specimen. I don't think they would have been allowed to enter any unit worthy enough to be called a heath care facility.
MM, I hope the professor does come by and participates. I had an anthro prof (cultural linguistics, ironically enough) who used to warn us that nothing you say to a journalist will ever be accurately transcribed. This professor could certainly offer insight that we just cannot get from this article. Thanks for contacting him! I would recommend he consult with donors at livingdonors.org. That's what Gwyn did, and we did contact someone who had a bad experience but he never responded. The person who did talk Gwyn through this was insanely energetic and pro-transplant.
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That was just how that hit me. I have to say I would be horrified if I were at dialysis and a group of philosophy students came by, safari-style, to check out the poor specimen. I don't think they would have been allowed to enter any unit worthy enough to be called a heath care facility.
See, now, that's where you and I may differ. As long as I had fair warning so I'd be sure to brush my hair and smell nice, I'd welcome students and would make damn sure they got a VERY good glimpse of what dialysis means. As a matter of fact, sometimes when I go to see my neph, his nurse will tell me that there is a student doctor who would like to come in and do the whole info gathering routine. Well, I've been doing this for longer than those students, so I have PLENTY to tell them. I make real sure they know my particulars because I hear the kinds of questions the neph asks them. I go through all my meds and explain why I take each one. AND most importantly (to me, anyway), I make sure they know that getting a diagnosis of incurable CKD can send a person through emotional hell, that it has happened to me, and I remind them that there is a PERSON there, not just a chart. Oh yeah, baby...they get an earful from me. Bring on the damn safari! I'll lead them to water!
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Henry, your perspective is just as valid as mine or anyone else's, so yes, by all means...the safari-students should hear from you, too.
As far as not wanting someone to donate on my account, while I understand that perspective, I have to think about how the burden of dialysis affects my family. It's not just about me. It's the ripple effect; help one person and you end up helping many. I'd be interested in the perspective of spouses of dialysis patients, particularly those who help with home hemo. Do THEY want to be doing this for the rest of their lives if they don't have to, if transplantation is an option? I think about our member in South Africa, Des, who misses so much time with her children because she is stuck in a clinic. Dialysis affects those kids. If Des could be successfully transplanted and reclaim her life at home, her kids would benefit.
I am thrilled that you love life on dialysis and that you are thriving. I wish all dialysis patients could be like you. But if most dialysis patients endured the treatment as well as you do, then there wouldn't be thousands of us on the waiting list.
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That was just how that hit me. I have to say I would be horrified if I were at dialysis and a group of philosophy students came by, safari-style, to check out the poor specimen. I don't think they would have been allowed to enter any unit worthy enough to be called a heath care facility.
See, now, that's where you and I may differ. As long as I had fair warning so I'd be sure to brush my hair and smell nice, I'd welcome students and would make damn sure they got a VERY good glimpse of what dialysis means. As a matter of fact, sometimes when I go to see my neph, his nurse will tell me that there is a student doctor who would like to come in and do the whole info gathering routine. Well, I've been doing this for longer than those students, so I have PLENTY to tell them. I make real sure they know my particulars because I hear the kinds of questions the neph asks them. I go through all my meds and explain why I take each one. AND most importantly (to me, anyway), I make sure they know that getting a diagnosis of incurable CKD can send a person through emotional hell, that it has happened to me, and I remind them that there is a PERSON there, not just a chart. Oh yeah, baby...they get an earful from me. Bring on the damn safari! I'll lead them to water!
A couple of things come to mind from this, and please take it in the philosophy class style - an intellectual exercise and little more until the students are herded right in front of you.
What if dialysis turns out to actually not be that bad for you? What would you say then? What if one of those students has a loved one in liver failure, or with terminal cancer? I don't want renal patients to come off as whinging or demanding that the world stop because they are ill. If you're doing fine, then does it become less compelling?
It reminds me of a brief conversation I had with another transplant hopeful at Northwestern. They used to take everyone to this ridiculous little corridor for labs, it was like an airplane galley and so uncomfortable and claustrophobic for all. The woman next to me was bright yellow. She asked me if I was trying for a transplant and I said yes, then she asked what type. My response in that moment was just a kidney. She immediately pounced on that and replied No, not just a kidney. You need those to live.... After all these years I never think of kidney in the plural anymore, and this was another testament to the fact that she had walked a different path. She, rather redundantly, told me she needed a liver. (I tried to act like this was news.) I guess if this professor is compelled to donate, why not half his liver instead? This might go to a "greater good" argument.
MM, perhaps you should invite students to come see you at home, because in-center it would not work unless you could somehow get permission of everyone there. At the clinic that was connected to my former nephrologist's office, there was a separate entrance and a large sign stating that you were not to enter unless you had business there. I assume this was an attempt to control sanitation, but I promise you I did not march in there and ask. At home you will probably do very well on dialysis, so again, what is the argument in this situation? I feel for Des, too (Hi, Des!) but even more so because she does not have the options we do. Maybe the professor should go to SA to donate? Hmmmm.
From my five whole days on dialysis as an adult, I was probably the only person there who was responsive. Most of them appeared much older than I, much sicker, and since it was in-hospital, they were almost certainly dealing with other health issues. If the safari had rolled by at the beginning of treatment, they would have come upon an individual who probably would have seemed insane because I was smiling so much. (I knew where this was leading, so I was just so excited to be in the home stretch.) Had they come at the end, they would have been told to eff right off or be escorted out by the police. I was cramping become some little toad of a nephrologist decided to pull fluid off that wasn't there, and I had the colossal headache that stayed with me until transplant. I do not want people to see me in that condition! The responsibility to socialise and fully engage with visitors is too ingrained in me - I would resent being put in that position.
I have certainly had my share of med students, but they always trail after the doctor. I don't mind them. My former GP in Cal loved to say "OK, this woman has a creatinine of 2.6 at XX years old - why is that?" I always wanted to be left alone with one of them early on so I could whisper "If he asks you a question, the answer is probably Because she's in kidney failure!" just to see his reaction. The med students, interns and residents are still trying to choose a field. If you find a good one, as I have a few times, I would not want to come off as too angry. I would want to encourage them to stay in nephrology. (And the good ones will be courted by loads of different fields. I was sitting next to a student at the cafe at Northwestern who was being lobbied by a doctor to join obstetrics, and this doctor clearly really wanted her to join the team.) A few years after I got my records from back in the day, one of them was signed by a resident who really left a mark with me. There was one resident there who was pure evil and the one who signed my records was sweet and would listen to the moany adolescent. I looked him up. He's gone into oncology. Ah! Such a loss.
Henry, your perspective is refreshing. As for your comment about the number of donors who die in the US, I have two quick questions: 1. Why do you care what the stats are in the US, what are the stats in Oz? 2. Do you have any biological children? (Please don't answer either one if you don't care to.) Because the death rate of women in childbirth in the US is 17 per 100,000, and most men have absolutely no issue with risking women's lives in this manner, and they frequently do this much more often than a donor would risk his or her life. 17/100,000 is roughly half the risk that a donor accepts. I've had 2 children, so I guess my husband and I have taken equal risk. And when is a risk so low that you just think well, that's just silly to let that stop me. Don't get me wrong, I was in a frenzied state before my transplant because these were no longer dry stats, this was my husband. But if you were contemplating donation, you might just think those stats are in fact an argument for taking the plunge.
I do have to wonder if the professor has considered that he may not even be eligible. My physical anthro prof wanted to do a study of blood pressure in his colleagues but had to scratch the idea when he found that over half the male professors over 40 were on blood pressure meds. I think most people who offer to donate do not even consider the risk that they may get information about their health that is less than encouraging. He may have only one kidney, they may be fused, he may show signs of high blood sugar..... Obviously, this only skims the surface of possibility.
This is such an interesting discussion. Thanks for all the input.
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There are a lot of things in this world that present an unacceptable risk, in my opinion. No one should own guns because there is that risk that a child will come along, find it and kill someone accidentally, but no one is calling for private ownership of guns to be banned.
Forcing dialyzors into thrice weekly inclinic sessions presents an unacceptable risk, too, but there is no move to increase access to optimal dialysis.
Carrying a pregnancy and enduring childbirth is statistically riskier than abortion, but pregancy is a choice and people willingly take the risk.
We take risks with other people's lives all the time. Everytime we get behind the wheel, there is a statistical chance that we will hurt or kill someone. At least with live donation, the donor gets a choice.
It is not my responsibility to think of donors' families...that is their responsibility and their duty. I can't be responsible for everybody and everything. That is why live donors should think very carefully about their decision and why prospective recipients should ensure that their donor has all pertinent information and is well supported. No operation is without risk, but if I were to have a live donor, I would trust that person's judgment. If the donor decided to back out because of the risk involved, no matter how small, I would honor that choice and just be grateful that he considered donation in the first place.
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Cariad, I'd be thrilled to have the safari-students come to my home and watch me dialyze (once I actually start). If I do really well on dialysis like you tell me I probably will, then I would share that with them and let them see my smiling face as I self-cannulate. I will explain to them that I am lucky that I am doing swimmingly but that it is hard work that other dialysis patients may not be able to do as well as I can. For every dialysis patient that is doing fine, there are probably at least five who are not. It's not about me and my wants; it's about being able to end someone's suffering, and that someone doesn't have to be me. If I am doing fine, then it's probably less compelling TO ME, but if I were a donor, the idea of literally saving someone's life remains probably the most compelling scenario I could imagine. But that's just me, but I don't think I'm the only one who feels this way. There are altruistic donors already out there who find the ability to change the course of a person's life to be incredibly compelling.
Most people in the US don't have many options, otherwise why are over 95% of dialyzors trapped in the thrice weekly incenter routine? More people each year probably get transplants as opposed to being supported in getting optimal dialysis. Actually, I'd be interested to know...how many people get transplants as opposed to being offered home hemo/home nocturnal/in-clinic hemo? Perhaps if optimal dialysis was the norm in the US, more people WOULD be fine on dialysis and not opt for transplantation. But dialysis as practiced in the US is next to barbaric which very few well-supported choices. Perhaps THAT's to where this discussion should really lead.
It is true that many people who offer to donate don't think about what health information might come to light. My own husband struggles with this; he is afraid that if he were to start the testing process, he'd find out he's diabetic or something, and he may well be right. Fear can lead to inertia in many people, and I don't even speak to him anymore about donating. But I DO stress that if there IS something physically wrong with him, then it's best to find out sooner rather than later. But overall, I've just dropped the whole subject. He's a big boy and doesn't need me to point out the glaringly obvious. I trust people to think for themselves.
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Actually, Henry, you do fit this particular description of most men because my point was you do not seem to have worried about the risk until something went wrong. My husband really wanted children but was afraid about the health consequences for me, so we had that wrenching discussion before the fact. Let's be honest, the species is in no danger of dying out, if anything overpopulation is now of grave concern. The evolutionary drive is there to reproduce, not do our best by the orphans that already exist. The species would have survived just fine without my contribution or yours. The comparison speaks to the fact that the risk is so small in both cases, yet few men (and few women, I suspect) consider this before attempting to reproduce. And women take all of the risk on with children, and are almost always the ones left to raise them in cases of divorce or parent abandonment. My kids would not exist if I had not had a transplant as a child. So, transplant can contribute to the survival of the species as well....
Sorry to hear about the horrible episode with your former wife. :(
I was just curious about why the focus on the US when you are not here. It hit me as an odd example since it is irrelevant to your personal consideration of live donation, and rather comes off as you scolding us Americans for accepting live donation. You gave that stat as part of your reasoning, and I would have thought it would make more sense for you to give us the OZ stat.
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.......Actually, Henry, you do fit this particular description of most men because my point was you do not seem to have worried about the risk until something went wrong. ......... .
Cariad, I am dumbfounded. You have made an assumption about me in complete ignorance of the circumstances,- and you with a research background!
Let me enlighten you.
Wow! Someone is absolutely spoiling for a fight. Frankly, Henry, I don't give a.... no, I won't go that route.
This has nothing to do with my research background, this is a conversation. If I were to research whether most men take the risks of pregnancy into account, I would most certainly not include anyone who had prior warning from doctors that there was danger. That is not the situation that most people are in, and has no bearing on the point I was making, which you went out of your way to say you did not understand.
How positively bizarre that you could be disappointed by someone whom you've never met, never will meet, and know next to nothing about, who had the sheer gall to not be so fascinated with your story and not request that you share every last detail of what I would have thought would be a personal, private situation. From what you wrote initially, you did not SEEM to take the risks into account. You say you did, fine. That was really and truly all you needed to write. My statement is perfectly valid - from what you wrote, since you made no mention of taking the risks into account prior, you would fit the definition of most men in that circumstance. Conversations in which one participant is simply waiting to pounce on any little phrase and nitpick it to death are pretty boring.
Do you really not understand that when you write in this holier-than-thou tone about donation, something you've not had to consider for most of your life, that it comes off as judgmental? I also have a writing and theatre background. There is a writing 101 saying that many young people struggle to comprehend: artist's intention does not matter. People get out of your writing what they get out of it, and if you cannot take responsibility for that, then perhaps writing is not the best activity for you. There are certainly unwritten statements in your posts, and many people's posts. When you end a treatise with "You say that you have to think of your own family. I think of the families of those who die donating." that is tantamount to saying "I care more about donors than you do. I am a selfless person and you just want a kidney and don't care how you get it." I have had this argument before and these sorts of statements crop up frequently.
I am interested in hearing others' thoughts about something that has been part of my life - often central to my life - since almost as far back as I can remember. I am not interested in playing your silly gotcha games. I asked two simple questions, you took both extremely personally and used it to attack my research abilities. ??? Your last explanation about using US stats made more sense to me, that was really the only part of your last two posts that was worth reading in my opinion.
In closing, I'll state the exact same back to you about what I've written....
If that caused you discomforture, I make no apology.
except I would probably say discomfiture, or discomfort - since those are actually real words.
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I think most people who offer to donate do not even consider the risk that they may get information about their health that is less than encouraging. He may have only one kidney, they may be fused, he may show signs of high blood sugar..... Obviously, this only skims the surface of possibility.
This is what worries me most. Oddly (perhaps?) I'm not worried in the slightest about the fact that I might die on the operating table, but I am worried that all these tests I'm going to be having in the next couple of months will throw up some underlying condition. And that worry is primarily focused more on letting Blokey down and not being able to help him in his desire to live a more 'normal' and certainly less tiring life.
But I DO stress that if there IS something physically wrong with him, then it's best to find out sooner rather than later.
This is what Blokey says to me when I let him in on my worries, and it is true, but for those of us who tend to stick our heads in the sand when we think something is wrong, it is a genuinely scary ordeal (but one I will get through)! He also points out that I'm getting a free top-to-toe medical and by the end of it I will know *touch wood* that I'm in perfect health ... thank you, NHS!
;D
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Poppy, as I've posted, my husband is afraid he might be on the way to diabetes, and he tells me that he doesn't want to find this out and then be disqualified as a donor. Now, my hubby is very smart, but this is stupid and just makes my brain explode. If he's going to be a donor, they're gonna find out if he's not in tip top condition anyway.
Those of us with ckd don't get the luxury of being able to just wish away our fears; going ostrich can result in death. If you love someone with a chronic illness, you can't find solace in sand.
Imagining how you will come to Blokey's rescue and then having someone tell you you can't donate...that would be a very bitter pill to swallow. All of this takes a huge amount of courage. But you will find many other ways to rescue him from the abyss that dialysis can become; love and huggles do wonders for anyone who is struggling with this horrible disease.
Your love will conquer your fear. I sense that in you. :thumbup;
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Aw, Poppy.... :cuddle; When it's your husband or someone close to you, there is a real risk of feeling like a failure if you cannot help, and that is not even to mention the dread you would feel if they did find something serious. I am wishing you the best of luck with this process.
Oh, MM, for some reason I missed the part about your husband fearing the tests in the first read. That has to be hard. I always assumed Gwyn would just jump up and get started, but there were many tense months where the initial donor packet sat on our countertop, untouched, and I got sick and angry of looking at it. I feel that between spouses, the rules can be chucked, so I eventually shouted something to the tune of 'how long do you expect me to stare at this packet before you do something?" We had a few ugly arguments over it. Gwyn always pleads ignorance, so he claims he did not know that the hospital would not ring to cheer him on every week or so. It took him ages to cotton on to the fact that you either show willing or they will write you off completely. I admire your level attitude toward this. I don't know how much longer the marriage would have lasted if my husband did not eventually get off his arse and make some appointments. (Now I feel guilty writing that. That feels like so long ago, and now when I think of him, I only see a stellar donor who went through misery with such grace just to end my life under the shadow of ESRD.)
The professor in the article may not realise that he could be rejected for something fairly minor, and that would render the project irrelevant at least for him. If I were he, I would at least get tested to see if you would qualify. Then back out if you don't like your odds, and no one would ever know.
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Cariad, my husband knows that he has to lose weight before being considered as a donor. This is probably the one area in which he has very little self control. He has a stressful job, and food/eating makes him happy. He simply does not know how to lose weight. I think he would be quite horrible to live with if he had to seriously diet. I KNOW he would never be able to follow a renal diet. The discipline simply is not there. His idea of dieting is to eat nothing all day and eat only dinner, but of course by the evening, he's starving hungry and ends up consuming more calories than he might otherwise would have.
He told his dad that for my sake, he'd be able to control what he put in his mouth. But he hasn't been able to do that for reasons that have nothing to do with "my sake". He has emotional attachments to eating and food.
What worries me is that his health will be compromised and I won't be able to look after him. He won't go to the doctor because he's afraid of what he might be told. I've told him on many occasions that it would be horrible if we BOTH ended up on dialysis. There is a part of me that thinks, "If I can do all of the things I have to do to keep myself healthy, then you can refrain from eating that extra piece of pizza," but this business of judging people by my own personal yardstick is unfair and unwise.
When he tells me that I won't have to wait the current average of 3-5 years for a transplant, my mind screams, "How do you know that? What are you gonna do to cut my waiting time?" I often wonder what he's really feeling, if he wonders if he is letting me down or if he wonders if I believe he's letting me down. I honestly don't know the answer. I'd like to believe that I'm OK with all of this, and most of the time, I actually am. But in my deepest, darkest moments, I wonder if I'm less important to him than that extra piece of pizza. But that's just my general unfocused rage shining through.
I suspect that part of the problem is that as of now, there is no urgency that he can perceive. I don't look any different to him. That my egfr is 15 means very little in theory. It's just a number. It's all just numbers. There are no trips to dialysis yet. There are no needles or dialysate or NxStage machines or blood or bandages or antibiotics or heparin pumps or any other evidence of severe kidney disease. There are tears and nightmares and rants and rages on my part, but he can just leave the room or try to distract me, and after a while, that evidence of malady has largely dissipated. I keep telling him that soon, life as we know it will change dramatically, and maybe then, that extra piece of pizza won't look quite so appealing.
Yes, the prof should first find out if he's qualified to donate. If he is not, then he'll be off the hook and can still feel all heroic for even considering it.
Was there one particular moment or occurrence that made Gwyn finally get off his arse? :rofl;
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Was there one particular moment or occurrence that made Gwyn finally get off his arse? :rofl;
Gwyn's on the phone right now, but when he's off, I'll ask him if he can remember, because I honestly can't think what the inciting incident was.... I'll report back. :2thumbsup;
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OK, I return with answers!
Gwyn: I don't know. You getting pissed off with me about it? I just thought I had to say I want to do it and they'd organize what needed to be done and I'd do it. I had other things to worry about, a life to lead, things to do, beer to drink.... I needed time off work? [this might well have been a factor as he worked for a company of pure evil and he really got going with the testing once he was let go from that place, which turned into one of those 'best thing that could have happened to us' scenarios]
I know I'd be really angry with Gwyn in your situation, because I was really angry with him in a similar one. It did damage to our relationship, although it's amazing how far donating a kidney goes toward repairing the damage. :rofl; At one point, Northwestern told all of us little kidney hopefuls that they could do the transplant as soon as we completed testing (assuming a live donor). Then they said that the testing was one of their ways of determining how keen you are. I was annoyed at this - do we really need mind games on top of everything else? It would seem they play the same games with the donors. Gwyn was never warned that he had to show all the initiative, and perhaps it's bleeding obvious to some, but I guess not to him. Like your husband, Gwyn is ferociously smart when he is in his element. Also has a razor-sharp wit. Might be a little low on common sense.... :rofl; (only joking!)
Hmmm, how to get your husband to the doctor, MM? I once went four years without going to the dentist, and there came a point where I just thought "Oh, I probably have a million cavities and will need a slew of root canals and to top it off, will be treated to a lecture from the dentist on my lax attention to my teeth." I finally went and it was such a load off my mind - my teeth were fine, no cavities, and I told him I was going to wait a year to see him again because I would be on immunosuppressants and did not want to take the risk when I could just wait until I was off them. (I contracted massive strep from my dentist appointment just before that one.) He told me that was fine, that "you have good teeth!" It was a lovely feeling, and I would still be worrying myself needlessly if I had not just picked up the phone and done it. Does he ever go to the doctor?
I remember that feeling of "he doesn't really love me" way back when we started this ordeal. It's is just awful. Especially since I told a friend that Gwyn was dragging his feet and I was starting to suspect that he did not want to donate and the friend very eagerly piped up "I'll do it!"
I hope your husband comes through for you, if that's what you want. How much weight would he need to lose to make their BMI requirement? Have you discussed the possibility of him donating even with the extra weight? I am telling you, there are no studies that i could find (even when I had library privileges) that show that extra weight in donors is any great extra risk. Although, I guess I wouldn't want my husband to be a pioneer in that way, just in case there is elevated risk there and it just hasn't been documented. I'm hoping you get a preemptive transplant one way or the other. It did wonders for me, twice! (mine were so close after starting dialysis that I can call them preemptive in this instance - poetic license!)
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No, he doesn't do doctors. And he doesn't do flu shots, so I've told him that if he gets the flu, he's on his own. I think what bugs me is the fact that he so totally neglects his health while I stand on my head trying to do everything I can possibly think of to stay in the best shape possible. I understand fear, and I understand the inertia it can bring, but I don't admire those things. I don't admire his lack of courage. And it's not about the kidney. If he doesn't want to donate, that's really OK; he says he will train with me to do NxStage at home, and that will be a tremendous help, and I will be very grateful for that. And he is emotionally supportive; it's not easy living with me all the time (I know that's a shock to learn). I am grateful for he HAS done for me, and that has been a lot, but much, much more is going to be required...more that doesn't even include donation. And I need him to be healthy.
I suppose extra weight may not make him ineligible to be a donor, but he won't find out what that extra weight might have done to him. Again, fear rears its ugly head.
I don't want this to affect our relationship. So far, it has not, but I am not as sick as I assume you were when Gwyn donated to you. If I was having a horrible time coping with dialysis and dialysis itself was keeping me alive but was at the same time causing me harm, then I might feel like he should make more of an effort, but I am not at that point yet. My strategy at the moment is to do what is necessary to stay on the transplant list but to not count on that as an option any time soon. I am just focussing on how to prepare for dialysis. Hope can be painful, and I often avoid it at all costs.
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I needed time off work?
*chortle* ... this is a good reason! It is worrying to think that I actually want the time off work as this perhaps should be a clue that I don't enjoy my job. Regardless though, if I get through the testing process and they say, 'Hey, let's set a date!' I plan on saying that July and August are no-no's. I work hard (in education) all year for my summer holidays; I'm not going to spend most of them in hospital and then recovering!
MM ... I still have a few pounds to lose before my BMI is acceptable (I should shift them by the beginning of Feb., which is when I'm seeing the neph, the counsellor and having the stress test,) and I'm doing it with WeightWatchers. It's brilliant now they've changed the points system! You could get hubby on a WW diet and he wouldn't even know (seriously).
;D
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Poppy, it's one thing to go through the testing when your life depends upon it, but it's quite another when you are doing it for someone you love. You are a star for even considering it. If you prove to be a viable donor for Blokey, I wish you all the happiness in the world and hope that the knowledge that you changed the course of someone's life for the better will lift your spirits forever. If you cannot donate, however, I know Blokey will love you for even trying and that you will find other ways to keep him happy and healthy. You have a generous spirit and a very big heart.
I am hoping that Blokey will be transplanted by the summer and that you two can spend the holidays enjoying a shiny new life together!!