Transplant "Audition"

[Deanne]

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.

[KarenInWA]

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

[MooseMom]

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.

[rfranzi]

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.....

[MooseMom]

Aw, rfranzi, 

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.

[KraigG]

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.

[rfranzi]

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, 

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.

[MooseMom]

 :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!

[Deanne]

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.