Transplant Evaluation & Depression

[pinky_22]

I've been having terrible insomnia for a long time, and finally complained to my neph about it. It's the kidneys (of course), but also stress and anxiety about THE FUTURE. GFR is at 11 and dialysis is looming over me. I'm also in the final steps of getting onto the transplant list (yay). Neph suggested I see a psych for counseling and/or meds, but also mentioned that if I'm depressed, the transplant team will deny me a kidney. (wtf? Why even say that??  ) So, if I start seeing a psych, will the transplant center know about it and what will they do? Do I have to notify them of any antidepressants I may be prescribed?

[MooseMom]

That's silly.  The tx team knows very well that depression is common in renal patients.  They do the psych eval to see if you are emotionally and psychologically equipped to take your meds like you're supposed to for the rest of the life of a new kidney.  Now, if you think depression would leave you in such a funk post tx that you won't be able to organize yourself well enough to take your meds and keep your appts, then you may be in a bit of trouble.

If you do see a therapist/counselor because of anxiety about the future, most tx teams would probably see that as a good thing, ie that you are acting pro-actively for the sake of your mental health.

When I did the psych eval, I spoke very openly about the anxiety I had felt for my 8 years of pre-dialysis life.  I expressed the same feelings you've mentioned about anxiety about the future.  These are normal feelings.  Who wouldn't feel this way?  Tx teams have heard it all before.  They heard it all from me, and I was accepted onto lists at two separate centers.

Good luck.  Get the help you need.  You need to take care of your emotional health; you need to be emotionally healthy to withstand the rigors of tx and post-tx life.

[cariad]

I've been having terrible insomnia for a long time, and finally complained to my neph about it. It's the kidneys (of course), but also stress and anxiety about THE FUTURE. GFR is at 11 and dialysis is looming over me. I'm also in the final steps of getting onto the transplant list (yay). Neph suggested I see a psych for counseling and/or meds, but also mentioned that if I'm depressed, the transplant team will deny me a kidney. (wtf? Why even say that??  ) So, if I start seeing a psych, will the transplant center know about it and what will they do? Do I have to notify them of any antidepressants I may be prescribed?

Hugs! It's difficult. I never trusted any transplant team with any information about the state of my emotional health. I do tend to get giggly and chatty when nervous, so I think it comes off as something quite different to depression. I don't think it is a definite that they would deny you over depression, but I personally wouldn't want to even go there with them. There is such a thing as privacy and even us lowly transplant patients deserve it. I took a few antidepressants - the only pychotropics I was ever honest about taking were those I could claim were prescribed for something else. My husband used this trick with some of his meds, too, (none were psychotropics) so that he wouldn't be denied the ability to donate.

To answer your very important questions, HIPPA laws give psychiatrists absolutely NO right to speak to any other person, medical or otherwise, without your express, written permission. Do not give it to them - they will probably ask for it, but any decent psychiatrist will understand your choice. There are instances where they are allowed to ignore your wishes, but those are of course in extreme cases where you may be a danger to yourself or others. If you are having suicidal thoughts, for example, you need to be very, very careful what you say. If you are prescribed drugs you don't necessarily need to tell the transplant team straight away - you may try several that don't work and so you won't be on them long enough for the transplant team to need to know - but obviously if you are going to be taking these drugs through the transplant procedure then you absolutely must, for your own safety, disclose every med you are taking.

Good luck!

[frankswife]

I agree with Moosemom. Frank is on Wellbutrin for depression, which is also used to help stop smoking. His transplant coordinator seemed more concerned that he might be on it for the smoking aspect than depression. He also wears a Catapres (blood pressure) patch on his shoulder and she thought that was a smoking patch! Thank goodness he doesnt smoke! I think they understand that kidney failure and dialysis can cause depression in ANYONE and I think they see it quite a bit.

[pinky_22]

Hopefully the team understands about the depression and anxiety. I definitely don't completely trust them though. During my initial meeting with the social worker, I felt like she was trying to trip me up, finding any excuse to deem me unsuitable. With my tx coordinator, I feel like just another patient in their pool of the sick. That may not necessarily be true, but that's how I'm feeling. I have already had hangups and delays due to my diabetes and test results. I'm so nervous about this process because it is the only center in my area. I'm unable to list out of state as I don't have private insurance. So this place is it. They need to take me!

My tx evaluation appt is in a week, and hopefully it goes well! The waiting will be nerve-wracking.
Thank you all for your advice and support.

[MooseMom]

Pinky, you probably ARE just another patient in their pool of the sick, but so what?  You don't need them to hold your hand.  You just need them to do their jobs efficiently and to tell you exactly what you need to do to get on the list.  Nothing more, nothing less.

When you need support, come to IHD or go to your friends and family.   

[jeannea]

Most centers understand that this disease causes depression. Many of us take meds for it. What they are looking for is to see if you are managing your depression. Does it keep you from living life? Are you suicidal? If you are suicidal that's a problem. If you manage things you're usually ok.

[MooseMom]

Jeannea is absolutely right!

[Simon Dog]

To answer your very important questions, HIPPA laws give psychiatrists absolutely NO right to speak to any other person, medical or otherwise, without your express, written permission.

a.  Unless the practicioner feels you are a threat to yourself or someone else

or

b.  Unless a minion of the federal government utters the root password "nationals security".   Yes, there is an "open book for national security" clause in HIPPA.

[cariad]

To answer your very important questions, HIPPA laws give psychiatrists absolutely NO right to speak to any other person, medical or otherwise, without your express, written permission.

a.  Unless the practicioner feels you are a threat to yourself or someone else

or

b.  Unless a minion of the federal government utters the root password "nationals security".   Yes, there is an "open book for national security" clause in HIPPA.

Both of these would fall under 'danger to yourself or others' which I did address in my first post on the subject. Truly, the federal government is not lurking around waiting to muck up a transplant eval. I don't think this information is particularly helpful nor relevant.

[Simon Dog]

Both of these would fall under 'danger to yourself or others' which I did address in my first post on the subject. Truly, the federal government is not lurking around waiting to muck up a transplant eval. I don't think this information is particularly helpful nor relevant.

The fact that "national security" is the root password to medical records is definitely not relevant to a transplant evaluation.   I was attempting to give an accurate description of the privacy limits, and specific lack of privacy with respect to the government, built into HIPPA.