Transplant "Audition"

[malaka]

Went last week for transplant evaluation at my local university-based transplant center.  An all day affair, which included a consultation with a nephrologist, a transplant surgeon, a nurse practitioner who showed us a long power point/video, a social worker, and a psychologist. What a sales job!  I was left with the firm impression that the University makes a ton of money on transplants and life-long aftercare. 

The strangest part was the psychologist evaluation.  Ever see Miracle on 34th Street where the store psychologist interviews Kris Kringle and Kris deliberately flunks the test?  That was me, almost.  What day is it?
How old are you?  Who is the President?  What is 5 = 5?  I was getting bored with this, so when she asked "What state are you in?" I  truthfully replied "A state of anxiety".  That set her off her track until I innocently commented "Do you mean geography?  If so, Michigan."  More inane questions followed.  She then asked: "Do you take drugs?"  I truthfully replied "Yes, about a dozen per day".  Again, she fell off her track.  She clarified "street or illicit drugs".  I truthfully replied "no, I do take prescription meds."  This poor young gal didn't learn, and later asked "do you take drugs with a needle?"  I replied, truthfully, "yes", and pulled out my insulin pens. Hey, was I supposed to guess what she meant?  If I'd said "no drugs" then I wasn't a compliant patient and would be rejected.   

I think she was glad when that part of the interview was over.


What goes around, comes around, however.  We are to receive a letter telling us we're in, we're not in, or we're in only if we change certain things.  My wife got home earlier than I did last night and shoved an unopened envelope with a very recognizable logo of the university on the return address.  I read it.  It told me that federal regs mandate that I be told of HIV test results.  I said only "I thought so" and handed the letter to her with a concerned look on my face.  She read it and said instantly "Who cares?" 

I can only guess that her disappointed response was that it wasn't the accept/reject letter she'd thought it was.   Oh the joys of 25 years of marriage. 





EDITED: Moved to proper section, Transplant Discussion- Sluff/Admin

[MooseMom]

Geez, what an ordeal, and such stupid, cookie-cutter questions.  I actually had a good time at my evaluation.  I learned that my coordinator had been in this job for only 3 weeks; she had previously been a dialysis nurse.  We hit it off instantly, and everyone was really nice and helpful.  I had to see the SW on a separate visit, and we chit chatted about the emotional and psychological responses that people may have to CKD.  I knew that if I chose this particular transplant center that I'd be working with them for years, so they needed to prove to me that they were competent and communicative.  It would be helpful to patients to remember that they are auditioning the transplant program, not merely the other way around.

Let us know what kind of letter you get next time!

[malaka]

At this center, we got this big notebook with names, addresses, phone numbers. Didn't get to meet TC or SW, just the surgeon and the transplant nephro. I guess its easier to give people the boot you don't know.  If I'm accepted, I have to return to confer with these people.

I still laugh at my wife's response to my negative HIV test.  I know she was disappointed it wasn't "the letter" but I wasn't expecting it any time soon since my medical records need review, etc.

[MooseMom]

I still laugh at my wife's response to my negative HIV test.

Yes, that did make me giggle!

[monrein]

Any psychiatrist, psychologist, social worker or other so-called "mental health professional" without a sense of humour will probably burn out in about 2 years....if not, then a quick punch to the chops by an annoyed patient could just take them out.

A close family friend who died several years ago of ALS (Lou Gehrig's disease) was highly amused when a silly social worker asked her if she was aware that she had ALS or Lou Gehrig's as it's commonly called.  Very sharp, despite her very physical illness, she replied "Oh no dear, that's quite impossible since I really don't like baseball and never watch it."   The SW, didn't get the joke (Lou Gehrig being a noted baseball player) since she was probably too young and so then made a notation that Margaret was suffering from MD...mild dementia.  Margaret thought this was hilarious and proudly told everyone how easy it was to become a doctor.

[drgirlfriend]

Any psychiatrist, psychologist, social worker or other so-called "mental health professional" without a sense of humour will probably burn out in about 2 years....if not, then a quick punch to the chops by an annoyed patient could just take them out.

A close family friend who died several years ago of ALS (Lou Gehrig's disease) was highly amused when a silly social worker asked her if she was aware that she had ALS or Lou Gehrig's as it's commonly called.  Very sharp, despite her very physical illness, she replied "Oh no dear, that's quite impossible since I really don't like baseball and never watch it."   The SW, didn't get the joke (Lou Gehrig being a noted baseball player) since she was probably too young and so then made a notation that Margaret was suffering from MD...mild dementia.  Margaret thought this was hilarious and proudly told everyone how easy it was to become a doctor.

  That's awesome!!  LOL!  The SW we spoke to was really great and funny. Plus we didn't have those weird questions, malaka. I hope you get on the list soon!

[malaka]

There are advantages to being older, knowing people, etc.  I did some behind the scenes checking and learned that one needs to really be messed up to flunk the psychology part of the "audition".  Most rejections are for reasons of poor physical condition -- not being well enough to withstand the surgery.   Cancer history is an important screen, too, as active patients don't get transplants.  I'm still healthy enough and don't have cancer that I know of, so I hope to pass and get on the list.  I'd love to read the psychological evaluation, however. 

This kidney disease is really getting to be a full time job!

[MooseMom]

I think the psych eval really is to determine if the patient is stable enough and disciplined enough to take a lifelong regimen of anti-rejection meds.  In their eyes, you are getting a gift, and they want you to be able to take care of it.  Would you give a kidney to someone who habitually skipped dialysis sessions, refused to adhere to the diet and never took their meds?  I'd think twice about such a patient. 

[cariad]

Hmmm, I don't think it's particularly fair to say one must be "really messed up" to be excluded due to the psychosocial. It is rare, but I have heard horror stories about people being rejected on nebulous grounds. They can hide behind 'patient confidentiality' any time anyone questions individual centres. Mental disorders like scizophrenia are quite real, and it is not uncommon for people with mental illnesses to also have physical illnesses. They are not 'really messed up' anymore than I am. They have a devastating disease.

Request your records if you want to see what they say. The psychological eval will be there.

[cariad]

Would you give a kidney to someone who habitually skipped dialysis sessions, refused to adhere to the diet and never took their meds?  I'd think twice about such a patient.

Oh dear, MM. You are describing the first 34 years of my ESRD life perfectly, (minus the dialysis bit). Of course I get what you're saying, but obviously they think their tests are more powerful than they actually are.

[MooseMom]

Would you give a kidney to someone who habitually skipped dialysis sessions, refused to adhere to the diet and never took their meds?  I'd think twice about such a patient.

Oh dear, MM. You are describing the first 34 years of my ESRD life perfectly, (minus the dialysis bit). Of course I get what you're saying, but obviously they think their tests are more powerful than they actually are.

But you've never had a cadaveric kidney transplant, have you?  I thought both of your donors were live donors who specifically wanted YOU to be the recipient.  Does that change the equation?  I don't know, but I suspect it does even if it should not. 

[cariad]

It shouldn't change anything. They were evaluating my suitability for the cadaver list, so the fact that I ended up having a live donor did not come into it. Plus, they do not want a living person to go through donation if the graft won't last. As far as I've ever seen, one must get onto the cadaver list first even if one has no intention of accepting a cadaver organ.

There is no way they can tell my entire history from their stupid psychological eval. It's an indignity that I resented being put through, and they treat it as if they've stumbled upon some magical formula that separates the successful transplant candidates from the ones who will lose the organ. My theory is that this dangerous attitude plays into why we hear ludicrous stories on here about people being blamed when a transplant fails (Riki, for example). If these transplant teams would get over themselves and return to the home planet, they would be forced to admit that their system is deeply flawed and causes unnecessary stress, while not having any science behind it. Where is the scientific evidence that talking to some bored and boring social worker does anyone one drop of good?

[MooseMom]

LOL, I do see your point.  I've seen my SW once, just for the psych eval, and my experience was entirely different from others described on this thread.  She told me that caring for a transplant means being vigilant about appointments and meds, and could I handle that?  I told her that I'd already been doing that for 7 years, so I had a good idea of what would be necessary.  Then we talked in general about how people handle ESRD and the stages of grief, how many people get stuck on "anger" (that's where I am and have been for a long time!), and that was it.  Haven't seen her since and probably never will again.

[malaka]

Moose Mom is right.  When I used the phrase "really messed up" I meant one who is not able to follow med regimens, make appointments reliably, etc. They don't want to "waste" a kidney on someone destined for rejection due to lack of understanding of the need for lifetime follow up care.  Apparently, some think its like changing a light bulb -- works fine until it burns out and you need another. It would be very nice to get a transplant and wave goodbye to the medical community, but that's not the way it is.

When I let the examiner know that I've had to take as many as 16 meds every day (well, some were a.m. and p.m. doses) and monitor my blood sugar to adjust my insulin, and that for various reasons I'd seen 9 different medical specialties in the past year, she did chill out somewhat.

I'm not holding my breath until I get "the letter" as I know it will take time to review my medical records once they get them from the various providers. And, if I get accepted, then I get to wait. In the interim, I'm still preparing for dialysis -- hopefully home dialysis which my treating nephro recommends.

[MooseMom]

Is there any reason you think you might not be accepted?  Has anyone hinted that there is a problem?  Or is it just understandable paranoia?

I think it is important to keep your body as healthy as possible once you're listed because you want to be in good shape for surgery and for a looooong life with a new kidney.  Home dialysis would help you achieve this.  It's really hard waiting for your kidneys to finally clap out.   

I can't wait to hear some good news from you!

[cariad]

Moose Mom is right.  When I used the phrase "really messed up" I meant one who is not able to follow med regimens, make appointments reliably, etc. They don't want to "waste" a kidney on someone destined for rejection due to lack of understanding of the need for lifetime follow up care.  Apparently, some think its like changing a light bulb -- works fine until it burns out and you need another. It would be very nice to get a transplant and wave goodbye to the medical community, but that's not the way it is.

Except, that is the way it is for some people. Not the waving goodbye part - they will track you down, trust me. Your hospital becomes like another alma mater, even down to the begging for donations.

As it stands, any conventional transplant will have its limits, and you may feel fine one day and wake up in acute rejection the next. Wouldn't it be wonderful if our medical outcomes were always entirely proportional to adherence levels? At least we could promise children in renal failure that if they just follow the rules, everything will work out for them. That is most definitely not the way it is. A lack of understanding is not the issue - the issue is that some of these drugs are positively brutal, and most of them are ridiculously expensive. People who are turned down due for psychosocial reasons generally have either lack of social support or are battling mental illness or addiction, supposedly anyhow. The problem comes when you get a trigger happy psychologist who decides to label people with various conditions based on a 20-minute conversation.

Your experience sounds particularly bizarre, Malaka. Those were the sorts of questions they asked me when I checked into hospital, just to make sure I was lucid enough to sign the consent form, but not ever in an eval. Glad you could have some fun with it.

I would follow up on that letter and listing date. If you have not already, confirm in very clear language with your coordinator that the hospital does not require any more tests from you in order to be listed. Ask when the committee meets next and tell the coordinator that you expect a phone call when a decision has been reached. If you are not listed for some reason, often there are things you can do to address those issues and you'll want to start as soon as you can. Good luck.

[MooseMom]

I would follow up on that letter and listing date. If you have not already, confirm in very clear language with your coordinator that the hospital does not require any more tests from you in order to be listed. Ask when the committee meets next and tell the coordinator that you expect a phone call when a decision has been reached. If you are not listed for some reason, often there are things you can do to address those issues and you'll want to start as soon as you can. Good luck.

This is a particular important point.  If you are not listed right away, don't panic.  When I had my eval last year, the surgeon warned me that the nephrologist (who I never got to meet) probably would want me to get my gallbladder taken out.  Sure enough, as I was going through the testing, it became clear that my gallbladder was a disaster (Oh, gallstone attacks are awful!), and yep, the transplant neph wouldn't list me until I got that puppy out.  So the tests do serve a purpose in that they are supposed to identify potential problems.

Gee, I never got a powerpoint presentation.

[malaka]

MM--to their credit, they were quite explicit about $$$$$.  And tips like "don't sign up for a Medicare HMO since it won't cover the needed drugs, but Medicare will.  Don't rely on Part D, you'll blow through that into the donut hole really fast. And they backed it in writing with a big notebook. 

I'm not particularly worried about not being immediately listed.  I know from another cite referenced here how long it takes on average to get a cadaver transplant kidney for type O blood.  I'm looking at about 5 years. And, I'm still not on dialysis,  so I can tell myself that the life expectancy clock isn't running yet. 

My wife got some good news for her.  Her company is offering no questions asked spousal life insurance for very cheap rates. Its only up to $40K, but I told her she should sign up.  Little by little, she's getting drawn into the chronic renal disease web and realizing that her life is changing, too.

[MooseMom]

I understand that you are not worried about being immediately listed, but just because the average wait for your blood type is 5 years doesn't mean you should allow your center to waste time.  The sooner you get on the list, the more quickly you accrue time, and that's important.  On the one hand, you want your center to be thorough in their evaluation, but they have a lot of patients to deal with, and it is all too easy for you to slip through the cracks.  Stay on them.  Don't let too much time pass before checking in and asking about your status. 

As for your wife, yes, as much as you may try, a spouse is gradually dragged down into the quagmire.  Do you have any idea how difficult it is for us renal patients to get life insurance?  I'm not sure it is possible, actually.  Not too long after I was diagnosed 20 years ago, my then-husband was offered the same sort of spousal life insurance for me, and I remember getting a letter that declined my application.  I was so upset because even though I felt fine, that letter made me realize I was not.  My then-husband was really shocked because he didn't realize, either, the seriousness of the situation.  My now-husband gets to see me in real renal decline, but I look the same to him, and I don't think he yet fully understands.  I mean, how could he?  But once I start D and he sees me sticking needles into my arms, I think he'll get it if he doesn't faint dead away.  lol  All in all, how is your wife handling things?  Is it still sort of all theoretical to her, or does she have a real understanding of your illness?

[malaka]

I've been as straightforward as I can be with her re life expectancy & uncertainty re same, disadvanatages of in-center dialysis versus some degree of freedom with home dialysis and much more with transplant, odds of getting kidney, big time recvoery problems post transplant and need for llifetime of medication and medical care.  She knows I'll never be "better", and never "better" than I am today.  Fortunately, her girlfriend's brother in law had a kiddney transplant so she wasn't entirely unfamiliar with the concept that once transplanted, you're still "sick" and need continuing care.

Today's nephro appointment caused him to guess that I'll be on dialysis by the Spring, although he cautioned that that was at best an educated guess.  GFR 17 from mid-September blood draw.  My wife isn't really up on the "technical stuff" like creatinine levels and GFR, but I told her GFR was roughly the % of remaining kidney function.   Like you, I don't apppear to be deathly ill, so its not llike CKD is in her face all the time.  That's a reason I told her to buy the life insurance--it may not be available next  "open enrollment" time.  Not that life insurance does ME any good, mind you!

We were told several times to wait for the letter of acceptance or rejection.  Since I've moved, I have an excuse to call them in a couple of weeks if Ive heard nothing.  That's the plan.

[MooseMom]

She knows I'll never be "better", and never "better" than I am today. 

I wish I had a dollar for every time I've said this myself, but in thinking about it, I'm not sure it is true.  I have an egfr of 16 and have to take a mountain of pills, probably much like you, and it occurs to me that if I am successful in my grand scheme to eventually do nocturnal home hemo, I will probably actually be much healthier than I am now.  I was in Las Vegas and had the chance to talk to Desert Dancer who does nocturnal with a Baby K, and she is off binders and most other meds.  She does take sensipar.  But she also has a billion dance classes a week, and I declare that I don't have the energy to do that.  So even though she is on dialysis, I'd bet that she is healthier than me.  Research shows that nocturnal home hemo gives comparable clinic results to cadaveric transplantation, so (and I cannot believe that I am saying this) I think you and I may be wrong in believing that we will never be "better" than we are today.

There are millions of people who live with imperfect health.  So many live with chronic disease, and you and I are just two of those people. 

We were told several times to wait for the letter of acceptance or rejection.  Since I've moved, I have an excuse to call them in a couple of weeks if Ive heard nothing.  That's the plan.

That's a good plan!  But this making you wait for a letter is bogus.  Once I was medically cleared, my coordinator called me (I was out of town attending to my dying mother, but she still called me!).  She said that all that was left was "the financials", ie, they wanted to make sure they'd get paid!  Once they cleared THAT, she called me again to tell me, and she said that an official letter would be arriving soon with my official listing date.  So this business of making you wait for a letter is really crappy.

[malaka]

I sort of suspect that the pathology department is doing a thorough review of my insurance card first!  Then they'll get around to the blood samples, xrays, etc. 

[MooseMom]

I sort of suspect that the pathology department is doing a thorough review of my insurance card first!  Then they'll get around to the blood samples, xrays, etc. 

And that's no joke!

[malaka]

Got "the letter" yesterday.  I passed the audition, once they believe me that the spot on chest xray which I've had since at least 1997 isn't cancer.  I told them it was old, I told them where it was, and I told them it was a granuloma or "coin lesion"--stuff radiologists have told me--but they have to check out my old reports themselves.  Like I'd know what a granuloma or coin lesion is!  Oh well, its all good news. 

Also, got a phone call today from dialysis clinic which wants me to show up and get taught home dialysis.  That's more good news since I really want to try home dialysis rather than appear at a center 3 days a week.
As I said, its all good news.

Now I'm waiting for my occasional Friday call from the nephro with my labs.  Will I go 3 for 3?  That would be great.

[MooseMom]

That's outstanding news, malaka!  While waiting for our kidneys to finally give up the ghost, we pre-D people rarely get good news.  So, I particularly happy to hear that you've received a whole shedload of it.  Here's hoping for 3 for 3, but even if it's just 2 for 3, well, I'd take that deal.

I'd be very interested to hear about your home D training if you care to post about it.  Anyone going through that process has so much to teach the rest of us, so if you want to share, that would be much appreciated.