I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Transplant Discussion => Topic started by: malaka on October 13, 2011, 01:02:11 PM
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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. :cuddle;
EDITED: Moved to proper section, Transplant Discussion- Sluff/Admin
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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!
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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.
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I still laugh at my wife's response to my negative HIV test.
Yes, that did make me giggle!
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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.
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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.
:rofl; 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!
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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!
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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.
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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.
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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.
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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.
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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?
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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.
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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.
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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? :P
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. :cuddle;
I can't wait to hear some good news from you!
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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. :P
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.
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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. :P
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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.
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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?
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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.
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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.
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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. :lol;
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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. :lol;
And that's no joke!
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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.
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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.
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I plan to post my experience with the training and with home dialysis itself. Not sure if I'm up for nocturnal with alll the alarms, etc., I've read about elsewhere. Good thing I'm into reading since I'll be sitting in a chair for hours. I'm going to try nocturnal, too.
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And, of course, my steroid use to treat membranous nephritis and nephrotic syndrome. Steroid-induced cataracts. Surgery 11/18. Just what I need -- more medical care!
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I plan to post my experience with the training and with home dialysis itself. Not sure if I'm up for nocturnal with alll the alarms, etc., I've read about elsewhere. Good thing I'm into reading since I'll be sitting in a chair for hours. I'm going to try nocturnal, too.
I can't remember the last time I had an alarm. I sleep like the dead. The only time my machine alarms is if I run over 12 hours, because then I generally run out of bicarb. By that time I've had a good night's sleep and it's time to get up anyway.
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Hi all, my psych eval is next Monday and I am concerned, primarily because I am on disability due to PTSD and anxiety disorder and I fear I will be discriminated against because of this. This, coupled with the fact that I have been raw emotionally, due to the oppressive and poverty ridden process of obtaining disability and being diagnosed in the middle of it all. Also, I had relied on Ativan for 11 years to deal with persistent anxiety, and it stopped working in 2009. I was diagnosed in 2010, and my pscyh. wouldn't give me xanax or any benzo because of the history with the ativan, so basically I could not get any effective medical help with the anxiety. I became depressed (for the first time ever in this way) and found that SSRIs, or anti depressants, did not agree with me (2009 was the year of bad side effects from experimenting with ssri's), so I am unable to get medical assistance with that either. Most of my help has to come from other methods (talkiing, reading, writing, excercise, etc).
Having said that, I see a psychiatrist and a counselor regularly (they had a lot of turnover in the past couple of years and I have not received the help I needed, hence the rawness, but I did just begin with a good counselor). I have taken NAMI (National Assn for the Mentally Ill) Peer to Peer Classes in living with mental illness, and started swim class. I quit smoking upon my diagnosis and have done research regarding my diet (doctors and nutritionists were not helpful, I finally just looked up food values online, created a spreadsheet, and began to change teh way I eat - a work in progress). I am starting a new ten week NAMI workshop later this month. The point I am trying to make is, I have overcome great adversity in my life (hence the ptsd) and I am a fighter. I do the work.
These doctors, I took the poor advice of Dr. Oz and tried to communicate with them. I was too honest, as I have had a habit of being brutally honest in my life. I told the social worker that she requested paperwork during the only time I spoke to her in three months and she neglected to simply ask how I was. I told my nephrologist that it all felt very assembly line. Instead of saying, oh, gee, we're sorry about that, let's work to make it better, they got cold towards me and spoke in short sentences. I also noticed that if I seemingly criticized anything, they went into cover their ass mode, whether it was repeating a test, or, it doesn't matter, whatever it was was not in my best interest. So, I may have shot myself in the foot by trying to communicate honestly with a transplant team who is clearly only interested in turning beds.
One last thing about the psych eval, the transplant team requested the notes from my psychiatrist, or rather insisted. I think this is a violation of privacy. The transplant coordinator told me that I am being asked to do this evaluation, even though my counselor wrote a stellar letter stating that I have been consistently receiving treatment, because of a psychiatrist's note from a recent session stating that I felt abandoned by my son. So now, any FEELING that I have that my psychiatrist writes down may be held against me. That statement, btw, was in the context of the empty nest syndrome and a missed phone call, and was out of context in terms of the transplant team peering into my supposedly confidential appointment with my shrink, where I am supposed to be able to bear all. This will be emotional, no way around it. It will be a challenge to family members too. I feel that the letter from the counselor stating that I was receiving treatment should have been sufficient and that my notes should have been private. I now have to censor myself with my counselor and shrink, not being able to say anything I wouldn't want her to write down, which diminishes the help I am really able to receive. This whole system and process, in my opinion, sucks. Try to get help and try to be honest and they use/hold it against you. I guess they just want mute, passive patients who elicit no emotion whatsoever. (Sorry for the sarcasm, Im still pissed)
Also, they postponed my evaluation decision for a second reason: my bloodwork showed I was exposed to TB (tuberculosis) at some point in my life. So they say I need to see some auto-immune specialist and I have to take some med(s) for 3 months before, all things being equal, I can get on the list. This is fine as I am pre-dialysis, although I have been getting sicker. The thing that bugs me is, they keep pushing for me to see this specialist and start on the meds BEFORE they will approve me. Why should I do this if I can be turned down? I get the distinct feeling they just want the money. It is disturbing. Any advice on either is greatly welcomed.
I haven't "shopped around" for transplant clinics, but at this juncture even if I do decide to go forward with a transplant, I am not sure these are the people I would let touch me with a ten foot pole.
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Rfranzi, this is a really important issue, and I hesitate to answer because my life experience is different from yours, but I'll tell you what I know to be true in my case and with my tx center.
It is my understanding that all potential candidates undergo a psych eval. The fact that you have been seeing a psychiatrist doesn't mean that THAT is the reason you are being asked to be evaluated.
I get the distinct impression that the tx center just wants to make sure you are psychologically capable of keeping to a strict regimen of post tx meds. They see this kidney as more important than your life, and they want to make sure you will not ruin it. They want to make sure you will not abuse substances that will injure the kidney. They want to make sure you will take your meds and keep your appointments so that the kidney will be safe.
Most renal patients are depressed, anyway. Whether it is the illness or the disability and poverty that CKD/ESRD that has mangled your life, depression is normal, and they won't care. They WILL care, however, if there is evidence that your depression will keep you from looking after that kidney. It is far better to be pro-actively treating depression or any other psychological disability than it is to just ignore it or deny it.
I don't know what to say about the TB meds.
I can understand why you feel like it is all a colossal invasion of privacy! And I can understand why you think being honest has not served you well. I hope you make decisions that you are comfortable with, and I am eager to hear what happens next.
You are a fighter AND you do the work; I hope your tx people see the value in this.
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rfranzi, if they are making you this uncomfortable I would find another hospital now.
I don't know that this is a money issue since I really don't know that they stand to gain anything financially by what they are putting you through, but I do think they are biased against you and possibly looking for another reason to reject you other than your mental health history. Everyone in the medical world knows (or should) that the TB test has a ridiculously high false positive rate and the fact that they would want to treat you rather than perform a second test to verify would scare me. They are stalling. Drop them.
I wouldn't let them see psychiatric notes either. Tell them no, do not sign permission for them to do so, and discuss how this is making you feel with your therapist.
This is what I would do anyhow. Tell the doctors that if they need to see the math on the false positive rate for TB tests, I will be happy to email them. I am serious. It's a bit complicated so might go over their heads, but they need to at least attempt to understand why that test is so unreliable.
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Sh*t like this is precisely why I've no interest in a transplant. I'd tell 'em to go pound sand. :Kit n Stik;
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Just curious about pot smoking.... isl that be a automatic reject if you smoke pot once in a while?
When I filled out the paperwork at my Neph's office the first day it asked if i used illegal drugs and I said I do smoke pot once in a while. Will that follow me if I end up having an interview for a transplant?
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I never had a psych eval to get on the list. I did talk to the SW, but it was more general issues, like how to go about filing an FMLA, do I own a BP cuff, thermometer, scale? And the big one, what is my post-op care plan? But no psych eval questions, no talking to a psychologist. I didn't even have to do that for my live donor transplant, which I thought was strange. I'm thinking it was because a family member donated to me. I do believe she went through one, but I did not.
KarenInWA
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I'm about to be listed and I didn't have a psych eval either. I don't understand why different transplant centers have these different requirements. It becomes worrisome because I wonder if some time down the road they're going to say 'Oops. You need to have your psych eval. I'll have to ask my transplant coordinator for clarification of the psych eval requirement.
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Did you speak with a social worker? That usually suffices for a 'psych eval'. Some ask questions from one of the many different depression/anxiety scales out there, but some just kind of shoot the sh!t with you. But yeah, follow up if you're worried about it.
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Thanks cariad. I will mention it. I did talk to the social worker on the day of my very first evaluation (plus the dietician, the transplant nephrologist, the coordinator, etc). Fingers crossed that THAT *was* my 'psych eval' !!
HAVE A SAFE TRIP !
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Just curious about pot smoking.... isl that be a automatic reject if you smoke pot once in a while?
When I filled out the paperwork at my Neph's office the first day it asked if i used illegal drugs and I said I do smoke pot once in a while. Will that follow me if I end up having an interview for a transplant?
Um, I guess it's good that you were honest, but they will probably make you take random drug tests to make sure you give marijuana up entirely. We had a heated discussion on here a while ago about a liver transplant hopeful being taken off the list for smoking mj. The only drug I have ever admitted to trying is alcohol, although that is not that far off from the truth. I grossly underestimated my alcohol consumption, though. What they don't know won't hurt me.
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Thanks cariad. I will mention it. I did talk to the social worker on the day of my very first evaluation (plus the dietician, the transplant nephrologist, the coordinator, etc). Fingers crossed that THAT *was* my 'psych eval' !!
HAVE A SAFE TRIP !
Aw, thanks, Todd! I'll talk to y'all from California.... :yahoo;
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What they don't know won't hurt me.
:rofl; :rofl; :rofl;
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Just curious about pot smoking.... isl that be a automatic reject if you smoke pot once in a while?
When I filled out the paperwork at my Neph's office the first day it asked if i used illegal drugs and I said I do smoke pot once in a while. Will that follow me if I end up having an interview for a transplant?
You'd better believe it, my friend. They'll look at you like you're a hardcore junkie and likely make you attend NA meetings for six months. (Obviously it depends on the center, but I'm not joking. Don't ever tell anyone you smoke pot. They've all fallen for the 'Reefer Madness' propaganda of the '30s.)
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Todd, my psych eval was just a chat with the social worker. The most obnoxious thing about it was that it required a separate trip into Chicago for the appointment. Like another poster said, they want to make sure you have a way to get to all of the required appointments post tx.
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Rfranzi, this is a really important issue, and I hesitate to answer because my life experience is different from yours, but I'll tell you what I know to be true in my case and with my tx center.
It is my understanding that all potential candidates undergo a psych eval. The fact that you have been seeing a psychiatrist doesn't mean that THAT is the reason you are being asked to be evaluated.
I get the distinct impression that the tx center just wants to make sure you are psychologically capable of keeping to a strict regimen of post tx meds. They see this kidney as more important than your life, and they want to make sure you will not ruin it. They want to make sure you will not abuse substances that will injure the kidney. They want to make sure you will take your meds and keep your appointments so that the kidney will be safe.
Most renal patients are depressed, anyway. Whether it is the illness or the disability and poverty that CKD/ESRD that has mangled your life, depression is normal, and they won't care. They WILL care, however, if there is evidence that your depression will keep you from looking after that kidney. It is far better to be pro-actively treating depression or any other psychological disability than it is to just ignore it or deny it.
I don't know what to say about the TB meds.
Thank you for the feedback. I apologize for not putting this in a separate post, but it all seemed related. I had a good talk with my neph and my counselor. I feel secure that I will have no problem letting them know that I will dutifully take my meds and follow directions, sir or maam, yes siree. I was angry at first because my counselor sent the psych notes without my permission and she broke the law there. She has apologized and promised to run anything by me before it goes out in the future. So, I will show up tomorrow, be as honest as I can without shooting myself in the foot, and I will be glad that that is over. It IS an invasion of privacy, if I have to sensor myself in therapy forget about getting help. And using a feeling as a basis for concern is not only a violation of privacy, it is outright bullshit.
Aside from the sticking points, I am going through it in the hopes of just getting the formalities over with. I sort of don't care whether they approve me or not, because I have serious reservations about going with them. I do plan to research another provider before I decide. So thanks, I appreciate your support and encouragement.
I can understand why you feel like it is all a colossal invasion of privacy! And I can understand why you think being honest has not served you well. I hope you make decisions that you are comfortable with, and I am eager to hear what happens next.
You are a fighter AND you do the work; I hope your tx people see the value in this.
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rfranzi, if they are making you this uncomfortable I would find another hospital now.
I don't know that this is a money issue since I really don't know that they stand to gain anything financially by what they are putting you through, but I do think they are biased against you and possibly looking for another reason to reject you other than your mental health history. Everyone in the medical world knows (or should) that the TB test has a ridiculously high false positive rate and the fact that they would want to treat you rather than perform a second test to verify would scare me. They are stalling. Drop them.
I wouldn't let them see psychiatric notes either. Tell them no, do not sign permission for them to do so, and discuss how this is making you feel with your therapist.
This is what I would do anyhow. Tell the doctors that if they need to see the math on the false positive rate for TB tests, I will be happy to email them. I am serious. It's a bit complicated so might go over their heads, but they need to at least attempt to understand why that test is so unreliable.
Thanks for your feedback. I am definitely not going any further with them at this point than getting on the this. During the first all day orientation, when it came time to take my blood the technician came home and I had to come back. When I came back, she forgot my appointment and had to take me to a different lab, where it took two people three times to take the 18 tubes of blood, making me miss the following appoinment I had with the nephrologist.
The next time, I told the coordinator that the patient could be having the worst day of their lives and it really impacts the patient's experience when the ball is dropped like that. Then the social worker called to ask for paperwork. I thought she was calling to follow up and see how I was but she never asked. I pointed this out also. It was quickly apparent that my attempts at constructive criticism and communication with my health care providers was naive at best. They went into cya mode and started becoming all about the forms, as if they weren't already. I will ask about a re-do of the tb and mention the high rate of false positives, thanks for that tip. I already got a referral for another hospital from a lady who recently had her transplant there, so at least I have options. We'll see how the test goes. Thanks very much for your feedback.
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rfranzi, I'm glad your counselor apologized to you; that's the least she could do!
Good luck with your appointment tomorrow; I'll be eager to hear how it went. What you said in your reply to cariad is important...do what you need to do to get on the list. Just do it. I know it is intrusive, but to them, you are just another patient and what you have to say to them tomorrow will be forgotten within the hour, so just smile, show you understand the responsibilities of taking care of a new kidney and demonstrate that you have a way to get to your post tx appts. Once you are on the list and you get that official letter, then you can dump this group and interview other centers.
It is hard to know whether or not a medical care worker/tx center will appreciate constructive criticism. I don't know about your tx center, but mine sends me a questionnaire for me to fill out anonymously after every appointment I have. That's when I make sure to include my constructive criticism, if I have any. I'd be interested to know if your tx center will send one to you.
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rfranzi --- sorry for your frustrating experiences. I've had a similar experience with the vascular surgeon who did my fistual in mid-October. I showed up for my follow up appointment in November and the receptionist said ... "Oh, you're booked for your appointment at the other office (I didn't even know they had another office) .......... if I call over and tell them you're going to be late, can you go there ?".
I said "No, I'm on my lunch hour. Just reschedule.". So, the next appointment is early December at noon. I leave work and show up for that appointment (the night before they left a reminder and also said, "If you miss the appointment, there's a $ 25 charge) ........... I walk in and the receptionist says, "Oh, we called you this morning (LEFT A MESSAGE AT MY HOUSE WHILE I WAS AT WORK) ..... the doctor had some surgeries scheduled for today, so all of his appointments have to be re-scheduled"
Well ........... I walked out without saying a word ........and this week, I'll schedule an appointment with a new vascular surgeon. The fistula is still a-throbbins away, I'm using the stress ball to exercise it ....and thankfully, I still don't have to use it (last labs from this past Tuesday have remained 'stable/unchanged')
But, still .......... totally rude and unacceptable. We have enough to deal with !!
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rfranzi, I know you're going through a difficult time. :grouphug;
My "psych" evaluation was just the meeting with the social worker. I think the social worker is the first-line psych exam. If the social worker saw any underlying psych issues, a phychologist/psychiatrist would have become involved. Like MM said, their concern is over the care you'll provide for the new kidney. I suspect there's something in they way you're talking with them that's sending out red flags. My sister has psych issues (bipolar disorder). I think she doesn't see it in herself that her interactions with other people and with life itself are different from people who don't have psych issues. From the outside, it's noticable. It doesn't mean you aren't capable of taking care of the new kidney. It just means they're likely to question you more closely because *some* people with psych issues have greater difficulties.
I suspect also that the fact that you indicated feeling abandoned by your son was a red light for them because he's your only relative living nearby, and thus likely the person you said is your primary caregiver. The lack of a caregiver is a showstopper in their eyes; if they have any hints that your primary caregiver has potential of bailing out on you, they won't list you. To mitigate this, you need to convince them that your son is involved and committed and you aren't harboring any resentment towards him that would cause you to refuse his help, or if he isn't 100% on-board to help you, you need to be able to provide information about other people who are committed to helping you after surgery.
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Did you speak with a social worker? That usually suffices for a 'psych eval'. Some ask questions from one of the many different depression/anxiety scales out there, but some just kind of shoot the sh!t with you. But yeah, follow up if you're worried about it.
The only time I spoke to my social worker since I was introduced to the clinic was when she asked me for my psych notes, which I found to be just wrong. She never once checked in just to "chat" or see how I was or even try to get to know me. The hospital is going through a merger, which might explain some of their mindlessness.
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I don't think it's the goal/role of the transplant social worker to get to know you. Her goal is only to make sure you'd take care of the kidney post-transplant. With this in mind, why would she check in/chat/ask how you are? Try to think about it more as a business. The social niceties aren't going to happen.
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I don't think it's the goal/role of the transplant social worker to get to know you. Her goal is only to make sure you'd take care of the kidney post-transplant. With this in mind, why would she check in/chat/ask how you are? Try to think about it more as a business. The social niceties aren't going to happen.
This is so true!!!
rfranzi, I promise that you will find all of this much easier to deal with if you incorporate Deanne's comment into your life. My tx social worker has never phoned me to ask me how I'm doing. I don't have any health care provider who has ever called just to see how I'm doing. Who does that? In November, I went for my first anniversary evaluation (my center requires that I have yearly testing and then a follow-up appointment with the coordinator...I'm sure most centers require something akin to this), and I didn't even see my social worker. Furthermore, my coordinator was on vacation, so I didn't even get to see her!
I keep remiinding myself that tx centers have more than one patient (although I'm sure I'm the bestest), but I have only ONE patient (definitely the bestest), so I don't expect a lot of handholding. There's a lot to be said for the mantra, "Don't take it personally." These people just don't have the time to get to know you. Besides, if you value your privacy, you don't really want them all trying to get to know you!
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MM, that reminds me of a question I keep forgetting to ask. I should post a separate question, but I'm kind of in a hurry - dentist appointment. blech! Anyway, have you met your coordinator(s)? My pre-listing coordinator was named Amy. I never met her and only talked to her a couple of times - when she needed something from me.
My post-listing coordinator is Dawn. I haven't met her, either and have only talked to her once or twice, too - when she called to tell me my gallbladder needs to go. Doesn't matter if I meet them or not. I was just curious.
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MM, that reminds me of a question I keep forgetting to ask. I should post a separate question, but I'm kind of in a hurry - dentist appointment. blech! Anyway, have you met your coordinator(s)? My pre-listing coordinator was named Amy. I never met her and only talked to her a couple of times - when she needed something from me.
My post-listing coordinator is Dawn. I haven't met her, either and have only talked to her once or twice, too - when she called to tell me my gallbladder needs to go. Doesn't matter if I meet them or not. I was just curious.
I never met my pre-TC because she was on vacation at the time of my evaluation appointment. I did meet her at my pre-op appt though. I never met my post-TC until my pre-op appointment. So far, she has been very good about calling me when my meds need adjusting, and returning my calls when I call her.
KarenInWA
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I met my coordinator on the day I had my evaluation which was back in Feb 2010. She had been a dialysis nurse for 13 years, and she just started this new job as a tx nurse coordinator. She had been on the job only 3 weeks. We liked each other immediately. The whole appointment took three hours, most of which I spent with her, but I also spent time with one of the surgeons and then with the inevitable phlebotomist.
I have not seen her since, which is disappointing as I had been looking forward to seeing her at my annual appt last year. She emailed me and told me that she was going to be on vacation on the day that I was scheduled to come in, and would I like to reschedule? I would have, but my husband had already moved some court dates around so that he could take me to the appointment (which is a 1 1/2 hr drive away).
I made sure to get her email address at the center in case I had any questions, and she was happy for me to be pro-active and encouraged me to email her whenever I needed. I liked that. While I sure don't expect her to want to "get to know me", she has been friendly and helpful, although she really did drop the ball and didn't get my appointment card and referrals to me in a timely manner! Basically, they forgot me. My listing date is July 2010, and I was told that I MUST have my testing done and make an appointment by July 2011. Well, mid July came along and I had heard nothing, so I emailed her, and all of a sudden I get my appointment reminder in the mail. Since I'm on an HMO, I have to get referrals for all of my tests, and I can't get those until I have a script from the coordinator, so I had to go chasing her around for those. So, I didn't get my testing done until October, and I didn't get to have my annual appointment until November (once all the tests were done), so I was disappointed that she had not been more efficient. At first I really freaked out about it and was worried that I'd be dropped from the list if I didn't get stuff done on time, but then I figured that I was not the one who dropped the ball, and I could prove it, so I stopped fretting and just did the best I could as quickly as I could.
I saw another coordinator last November since mine was on holiday, and the first thing she did was to sit me down and talk with me about ECD kidneys. She had seen that I had agreed to consider those, so she handwrote me a list of questions to ask when I get a call for one of those. I had actually received TWO calls when I was in LV at the IHD meetup, and in fact, she was one of the coordinators who phoned me in LV. Anyway, she was nice and well-informed.
I have no idea if I will have a different coordinator post tx. I am in the process of trying to get listed in Wisconsin, so I'll have a whole 'nuther set of coordinators to deal with. I like the ones here in Chicago, so I am not thrilled about having to change, but ya gotta do whatcha gotta do. All I know is that once my records are sent to WI, they'll assign a coordinator to me. Hopefully it will be someone who I can work with.
I like to think I'm reasonably intelligent. I'm compliant, and I make an effort to do what I need to do to take care of myself. I also like to think I'm reasonably pleasant to deal with, and I also realize that most people have other things to worry about than my paperwork. I make an effort to be helpful and informed, and if someone makes an error, I try to remember that we're all human. Therefore, I don't have much difficulty dealing with medical people. There has been only one doctor I have come across that was undeniably arrogant, and that was a cardiologist at the tx center that I was forced to see. OMG, did he have a high opinion of himself! I KNOW he assumed that I, being a mere patient, couldn't POSSIBLY have more than two brain cells to rub together. But far from offending me, it just made me giggle. It still does. I'd never met anyone quite like that, and I'm still astonished.
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rfranzi, I'm glad your counselor apologized to you; that's the least she could do!
Good luck with your appointment tomorrow; I'll be eager to hear how it went. What you said in your reply to cariad is important...do what you need to do to get on the list. Just do it. I know it is intrusive, but to them, you are just another patient and what you have to say to them tomorrow will be forgotten within the hour, so just smile, show you understand the responsibilities of taking care of a new kidney and demonstrate that you have a way to get to your post tx appts. Once you are on the list and you get that official letter, then you can dump this group and interview other centers.
It is hard to know whether or not a medical care worker/tx center will appreciate constructive criticism. I don't know about your tx center, but mine sends me a questionnaire for me to fill out anonymously after every appointment I have. That's when I make sure to include my constructive criticism, if I have any. I'd be interested to know if your tx center will send one to you.
Well, I really don't know, but I feel like they gave me the longest test they could find. And granted, maybe I need some etiquette lessons in dealing with doctors and nurses. But seriously? The same cognitive test I took for disability? It was an insult to my intelligence. It was two hours long and extrememly probing. In the end, I eventually cried a little and did admit to being depressed, but pointed out all that I was doing to work on it. And in the end, he told me I was depressed, which was so insightful (okay, I'm being sarcastic here) but really, I told him that I am sure many kidney patients struggle with depression and that I was going through the stages of grief in dealing with this disease. He assured me he wasn't the kidney police, but why don't I believe him? I likely will not use this hospital for my transplant anyways, they have screwed up everything they have touched with me and frankly they scare the crap out of me. But I would like to get on the list so that I an pursue this from there. As I explained to the shrink, this is my life we're talking about saving, I'm allowed to be passionate about it. I'm reminded of the scene in that baseball movie with Madonna and Tom Hanks when Hanks said to a female ballplayer "there's no crying in baseball." I feel like, similarly, someone should needlepoint, "there's no sentiment in medicine" and hang it in all the patient rooms so I remember not to be human around these people. At least that's how I feel I am supposed to act. I know I am a little raw emotionally (I tear up easily lately), but gimme a break. I quit smoking recently, had shitty counselors until recently and have been dealing with a lot of this alone. I am building my support system, I have made new friends, well, I'm working on it. If they knew me they wouldn't be putting me through this shit, just put it that way. I just really feel like this is happening at all because I cried and admitted this was difficult to deal with at times, and I told them what I thought when they screwed up. And I suppose I secretly worry that they will reject me out of spite. Am I being paranoid? I really dont think I am. Oh, well, all I can do now is wait for the certified letter. Another impersonal way to treat a patient. Would be nice to get a phone call, but I'm not holding my breath.
The weirdest thing happened in fact. Just a few days ago, the transplant center called me, not to remind me of my upcoming psychiatric eval, but to tell me to call the psychiatrist's office and confirm prior to the appointment. I couldn't help but tell her that doctors usually call me to confirm appointments, but if that's what she wanted me to do, I'd be happy to do it. Just seemed backwards to me, actually nonsensical. But maybe I'm just too logical.
Just shoot me (metaphorically speaking, of course) :) Anyways, that's the train wreck that was my psych eval. I'll let ya know if I get listed. Say a prayer.....
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Aw, rfranzi, :cuddle;
I've been thinking about you all day, and after reading this about your eval, there is so much I want to say to you. But you know, I don't know you any better than those doctors do, and I don't really want to risk saying anything that might upset you or make you feel worse than you already do. On the other thing, I don't think it is right to just ignore someone's distress simply because you're afraid of upsetting someone; I find that disregard is much more painful than someone saying the "wrong thing."
So, after reading your post, this is what I am left with...
I think you are being terribly hard on yourself. I don't think you are giving yourself enough credit for working as hard as you are on building a support system and just generally staving off insanity. And since you aren't giving yourself a break, you are not letting yourself believe that others might show you a bit of mercy. Why aren't you letting yourself believe that this guy truly isn't "the kidney police"? Experiencing depression in the face of chronic illness is so normal that they have lectures about it; I actually attended one and submitted questions (well, it was a webinar). There is nothing to "admit". There is nothing to "judge".
It is not easy to hold on to your dignity when you have to go through a process like a transplant evaluation. It is very easy to feel like you are being judged, like there is some secret panel that will decide whether or not you are "worthy." You are dealing with the most intimate of issues, your survival. But to them, it is just not that personal. Frankly, they're just not that into you. LOL!
There is no sentiment in medicine...you are right, but to be honest, I'm not sure a physician or nurse could remain emotionally and psychologically intact if they got personally involved with every patient. How many times have we read posts from people who dialyze in clinic and get so upset when another patient passes away? They inevitably decide not to get too close to other patients; it's self-preservation. I know that many medical people employ this same tactic, and it's wise that they do so.
I know that you feel that you sabotaged yourself by admitting to feeling depression and grief, but I can virtually guarantee you that that is not the case. Surely you don't believe that you are the only person they've ever encountered who has expressed these emotions! Some years ago, I went to the dialysis clinic to see the renal dietician, and she was telling me that she shares her office with the clinic's social worker. She described how often they see patients sob their eyes out as they are sitting there, filling out the forms, etc when they are about to start dialysis. So, everyone knows how traumatic this all is; I suspect, though, that they don't know, though, if you know what I mean. They see the raw emotion so often that they become emotionally immune.
If you have the financial resources for a transplant, they won't reject you out of spite. They want to make money. There is so much money to be made by the surgeons, the nurses, the coordinators, the office staff, the anesthesiologists, the phlebotomists, the radiologists...God, the list goes on and on. They don't care if you're depressed. As long as you can pay for their services, and as long as you can demonstrate that you understand the responsibilities that go along with getting on the list, staying on the list and then taking care of a new kidney, they don't care so much about whether or not you are "worthy" by anyone's criteria.
Once you are listed, you can certainly go to another program, and you may find the new program to be a lot better. But I don't think you will find any program where anyone will just call you up to chat and check in with you. I suspect you may be expecting too much on a personal level, whereas what they can offer is something more on a professional level.
You are right to be passionate about your own survival. Your passion should be evidence that you will take very good care of your new kidney; that's what they want to see.
Do you really...in your heart of hearts and soul of souls...believe that your eval was a "train wreck"?
I have high hopes for you. :cuddle;
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MooseMom, I wonder if you had the same coordinator that I had?
All went well until she came on board. Then I stopped hearing back. She then put me on something called "Status 7", which meant I was accrueing time on the waiting list, but still needed to finish "2 more tests." When those tests were done? "Oh, we're having a meeting next Monday. I'll let you know how it goes." And no call. Finally, it turns out I need a couple of more procedures. And so on.
I had thought that even though I was approved financially, the fact that I only had Medicare weighed heavily on my mind.
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I know that you mean well, but I find your feedback irritating. First of all, you tend to side with the doctors every time I write, and you are not corrrect. It turns out that when I have felt that something was wrong with my treatment, by changing doctors and questioning until I got answers, it took four nephrologists but I found one who was in it for more than just the money and when I did I also found out that I was right. Steve Jobs went through over 30 nurses to find the three he ended up with. You may mean well, but you don't know me or my doctor.
Now, as with this doctor, again you are not correct when you say he is "just not that into me." In fact, my counselor called me to get permission to return his call. Apparently, he called her and left a message saying he wanted to speak to her as a professional to find out what made me "tick". Apparently he was somewhat into me.
And when I was speaking with him and made the very same argument about clinical depression being a normal part of kidney disease, which I understand very well, the psychiatrist's response to me was, "not all patients who have kidney disease are depressed." Quote, unquote.
I know that I am not the only person that they must have encountered with depressive emotions. I would not be as egotistical as to think so. They don't seem to know it, though. They must have a lot of patients who lie to them.
So while I am glad that you may have had a more positive experience than mine, not everyone is as lucky. Some of the things I spoke about, the fear of retaliation, etc. are, first of all, just feelings that I am expressing. Secondly, my story as I tell it, is how it is happening for me. Not the way you are portraying it, not from mine nor the doctors perspective. For me, this guy IS the kidney police. Plain and simple. Don't tell me what my evaluator is to me please.
Thank you for the well wishes, and I do appreciate the feedback. Being hard on myself is what I do, it is how I have been able to excel in the past and also something I have worked on. But, yes, it was a bit of a train wreck (I got a very expensive parking ticket at the end of the appointment). I honestly have been trying not to think about it ever since.
Aw, rfranzi, :cuddle;
I've been thinking about you all day, and after reading this about your eval, there is so much I want to say to you. But you know, I don't know you any better than those doctors do, and I don't really want to risk saying anything that might upset you or make you feel worse than you already do. On the other thing, I don't think it is right to just ignore someone's distress simply because you're afraid of upsetting someone; I find that disregard is much more painful than someone saying the "wrong thing."
So, after reading your post, this is what I am left with...
I think you are being terribly hard on yourself. I don't think you are giving yourself enough credit for working as hard as you are on building a support system and just generally staving off insanity. And since you aren't giving yourself a break, you are not letting yourself believe that others might show you a bit of mercy. Why aren't you letting yourself believe that this guy truly isn't "the kidney police"? Experiencing depression in the face of chronic illness is so normal that they have lectures about it; I actually attended one and submitted questions (well, it was a webinar). There is nothing to "admit". There is nothing to "judge".
It is not easy to hold on to your dignity when you have to go through a process like a transplant evaluation. It is very easy to feel like you are being judged, like there is some secret panel that will decide whether or not you are "worthy." You are dealing with the most intimate of issues, your survival. But to them, it is just not that personal. Frankly, they're just not that into you. LOL!
There is no sentiment in medicine...you are right, but to be honest, I'm not sure a physician or nurse could remain emotionally and psychologically intact if they got personally involved with every patient. How many times have we read posts from people who dialyze in clinic and get so upset when another patient passes away? They inevitably decide not to get too close to other patients; it's self-preservation. I know that many medical people employ this same tactic, and it's wise that they do so.
I know that you feel that you sabotaged yourself by admitting to feeling depression and grief, but I can virtually guarantee you that that is not the case. Surely you don't believe that you are the only person they've ever encountered who has expressed these emotions! Some years ago, I went to the dialysis clinic to see the renal dietician, and she was telling me that she shares her office with the clinic's social worker. She described how often they see patients sob their eyes out as they are sitting there, filling out the forms, etc when they are about to start dialysis. So, everyone knows how traumatic this all is; I suspect, though, that they don't know, though, if you know what I mean. They see the raw emotion so often that they become emotionally immune.
If you have the financial resources for a transplant, they won't reject you out of spite. They want to make money. There is so much money to be made by the surgeons, the nurses, the coordinators, the office staff, the anesthesiologists, the phlebotomists, the radiologists...God, the list goes on and on. They don't care if you're depressed. As long as you can pay for their services, and as long as you can demonstrate that you understand the responsibilities that go along with getting on the list, staying on the list and then taking care of a new kidney, they don't care so much about whether or not you are "worthy" by anyone's criteria.
Once you are listed, you can certainly go to another program, and you may find the new program to be a lot better. But I don't think you will find any program where anyone will just call you up to chat and check in with you. I suspect you may be expecting too much on a personal level, whereas what they can offer is something more on a professional level.
You are right to be passionate about your own survival. Your passion should be evidence that you will take very good care of your new kidney; that's what they want to see.
Do you really...in your heart of hearts and soul of souls...believe that your eval was a "train wreck"?
I have high hopes for you. :cuddle;
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:cuddle;rfranzi, thank you for your reply. I wish you all the best in the world and hope you will find the good care that you deserve! Take care! :thumbup;
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I hope you're doing ok rfranzi. I worry about you.
MooseMom is one of the most supportive people here. Read her messages. She's well-informed and has more compassion in her little finger than I probably have in my whole body.
I'm not trying to pick on you, but this kind of struck me in your message: "Steve Jobs went through over 30 nurses to find the three he ended up with. " Steve Jobs also ended up dead because he refused to follow his Dr's advice. Instead, it seems like he kept looking until he found someone who would tell him what he wanted to hear.
Just be careful.... Of course you need to keep looking until you find the care you need, but keep an open mind, too.