Md. philosophy class gets a real-world question: Should professor give a kidney?

[cariad]

Aw, Poppy....  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.

[MooseMom]

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?

[cariad]

Was there one particular moment or occurrence that made Gwyn finally get off his arse?

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. 

[cariad]

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. 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....  (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!)

[MooseMom]

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.

[Poppylicious]

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).

 

[MooseMom]

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!!