Checking In

[rfranzi]

Hey all, sorry I haven't been on here for quite a while. I was doing my best to squander a few months of denial before I really had to face the prospects of my disease and all that it entails. More specifically, since I last posted, my kidneys have worsened and I have started the transplant evaluation process. I am not going to go into how I lost my cool a little bit when they told me I needed a psychiatric evaluation (after my counselor said she wouldn't send psychiatric notes so as not to adversely affect my transplant decision). Nonetheless, my question is, what do they ask/want to know during a two hour psychiatric evaluation? It feels intrusive and my counselor meetings are not confidential? Part of me wants to tell them all to go to hell, and I told them they had a proverbial gun to my head, but they get stiff and defensive when I give them that kind of feedback. I even dispensed with the sarcasm and used the words: it is very different on this side of the phone, for the patient it is a very automated, systematic experience, assembly line. Name? birthdate? put this on and wait here. Next? Poke, prod, stick, squeeze, hurt. I explained to the social worker that, for instance, when the coordinator told me she wanted to talk with me, I naively thought she wanted to see how I was doing. But she never asked how I was doing, she needed paperwork from my current psychiatrist/counselor. When I pointed this out, she got condescending and said: "Well, you're going through a lot right now and we want to make sure you have the support you need." I can't believe my counselor sent adverse notes. Anyways, that is medical speak for "I have you right where I want you and I hold all the cards, so kick and scream all you want." She didn't have an ounce of genuine concern for me in her voice at any time, ever. She was defensive and made it clear that she would not admit to doing anything wrong, ever, never mind having any interest in changing or improving anything. So much for ideology. No, her response was more like, I asked how you were when we met at the orientation and I generally always ask how patients are when I speak to them. Who cares if she asked how I was when she met me? That was months ago. What an idiotic thing to say. She's supposed to be a social worker, but she doesn't like me pointing out (not in these words exactly) that she's a glorified paper pusher who really works for the insurance company. I guess I'm pissed, and this is why I went into denial, because I was getting too depressed and angry at the callousness of the system and the drones these workers are trained to be and how helpless I am over changing it at all. She went on to tell me that they were patient centric because they offered patients options in transplant scenarios. Listen, I have hated dealing with these people, doctors included, from the beginning and I am going to hate it. My fate is written, dialysis or a transplant, maybe some of both, either way, its coming. I forget what my creatine is, I get tested again in January, but my kidneys are at about 23%. I was too nauseas to eat at thanksgiving, I am getting wrestless legs more often, bad heartburn in the middle of the night, and light nausea. Also, sometimes it feels like I am developing a very bad sore throat, but it passes. So I'm sliding downward as they say....my form of kidney disease is rare and progressive (fibrillary glumeronephritis) and I was told a year ago that I would be on dialysis in two years. Unless I pull a rabbit out of my hat, it looks like I am on schedule. I quit smoking a year ago, started a swim class and a NAMI class for people with mental illness. I see a counselor and shrink regularly. I actually do work hard at trying to help myself. I have made attempts to reach out more to friends and family and am working on making new friends and being useful to myself. I try to put in the work, but I admit to dealing with a lot of depression and anger. Anyways, I would appreciate hearing others experience with the psych eval. Thank you for your feedback and for letting me vent. Happy holidays to everyone. I hope for one day we get to forget about kidneys and celebrate our loved ones and this one life.

[MooseMom]

In my experience, all they want to know is if you are mentally/psychologically capable of maintaining a transplant.  Are you disciplined enough to endure the strict post-tx med protocol?  Simply put, can they trust you to take your medicine, and do you understand that you will be taking said medicine for the rest of your life?

All I can tell you about is my own eval at my tx center.  We chatted about the seven stages of grief and how so many people get stuck on anger.  They then wanted to make sure that I would have transport so that I could get to the tx center for the endless labs post tx.  And they wanted to be reassured that I'd have some modicum of support so that I wouldn't starve while recovering.

These people don't really care about you, and why should they?  So what?  You don't know them, and they don't know you.  You've been thrown into a situation that you did not choose, and you are having to come into contact with people whose job it is to make sure you won't ruin a perfectly good kidney by not taking care of it. 

Yes, these people can be nothing more than drones or paper pushers, but who cares?  As long as they are competent and they do what they need to do to help you get transplanted, then do you really need them to hold your hand?  I expect the medical people I deal with to be competent and reasonably pleasant, but I don't need them to be overly compassionate or empathetic.  Just get me on the damn list!

As I was going through the eval process, I always asked myself, "Do I want to work with these people?"  I can take my business elsewhere, so they had certain standards I set that they had to meet.  Maybe if you thought along those lines, it might help you with this.

I know it feels intrusive and even coercive.   

[Deanne]

 

It sounds like you're really struggling. I understand the anger and frustration. I hated the eval process even though I whizzed through it for the most part. I had to change centers after one appointment with the first one because I was so angry with them at insisting I have a "caregiver" accompany me to each and every appointment. It still makes me angry to think about it.

You just have to play the game. Don't take any of it personally. Smile, be cheerful, keep their goals in mind (having a perfectly compiant patient to make their stats look good) and play to them. I think some of them really do have our best interests in mind, but really - you don't want to trust them too much. I took an approach of "If they don't ask, I won't tell." Their focus is on their stats. To have good stats, they need to do their best to make sure the patients they transplant will be 100% compliant and make the transplant last a long, long time. This makes them look good, which makes other patients want to use them. In the end, the patient also benefits because you're one of these patients who has the transplant that lasts for a long time.

Take a few deep breaths, be calm when you talk to them, and then come back here to blow off steam. We understand.

[rfranzi]

Wow, first of all thanks for understanding and allowing me to just say it like it is. I have to work hard at not loosing my cool with these people. I get angry over how it is so obvious to me that the last thing on their minds is the patients experience and the first thing is their stats. Let's just take the word care out of health care please and just call it a health system. Anyways, I'll stop myself there lest I begin another rant. I just wanted to say thank you for the consistency in the support and understanding I get here. Thank God for you guys or I'd feel like I was going insane. I know full well that the person I am dealing with in any situation would feel the exact same way if they were in my shoes and the tables were turned. I know it's not just me, that the process is cold and intrusive. Anyways, I am in fact excellent with my meds and once I make up my mind to go forward I will be fine with what I have to do. So, I will pull myself together, realize that trying to advocate for patient care is futile at this point and I will just be the compliant, thoughtless, robotic subject of a patient they are forcing me to be in order to be listed. I guess having an opinion or being open to improvements in the standard of patient care are not options. What a sad world we live in. Sometimes I wonder if it really is worth fighting for, but that's just the depression and the local news talking. Fight on, I shall. Happy holidays and thank you again. I send out a big thank you hug.