Transplant "Audition"

[malaka]

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.

[malaka]

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!

[Desert Dancer]

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.

[rfranzi]

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.

[MooseMom]

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.

[cariad]

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.

[Desert Dancer]

Sh*t like this is precisely why I've no interest in a transplant. I'd tell 'em to go pound sand.   

[Riverwhispering]

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?

[KarenInWA]

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

[ToddB0130]

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.

[cariad]

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.

[ToddB0130]

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 !

[cariad]

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.

[cariad]

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....

[okarol]

What they don't know won't hurt me.

 

[Desert Dancer]

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.)

[MooseMom]

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.

[rfranzi]

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.

[rfranzi]

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.

[MooseMom]

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.

[ToddB0130]

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 !!

[Deanne]

rfranzi, I know you're going through a difficult time. 

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.

[rfranzi]

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.

[Deanne]

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.

[MooseMom]

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!