Question about Depression

[monrein]

And did they ever figure out the reason for you losing those kidneys Riki?  I sure hope that your wait is related to availability only and not to stupid assumptions that are in fact incorrect.  Were they trying to discover why your body was having nothing to do with those 2 kidneys?  I mean that would make some sense to try to solve that puzzle before repeating the transplant process.  I think that once you're on the list they no longer have say in which person gets the next one up that matches you. I'm also out of the loop in this area now since I had a living donor second time round.
Maybe a trip to Halifax would be worth the bother to see a psychiatrist.  I think it's a real shame that there isn't more access to better counsellors or therapists or whatever because medication certainly has it's place but I also really value the additional benefit of someone to talk to regarding any number of life crises and if D doesn't qualify I don't know what does.  Anxiety disorders are so common and of course made worse by stress of any kind.
I also know that when I needed a kidney the second time, the wait list time in Toronto for my blood type was approximately 8-10 years, very much longer than the first time around.  Straightforward supply and demand.

[jagermiester]

As someone who has had to deal with depression for a long time and is now in school studying to be a counselor, I would like to add my 2 cents worth here.  Not everyone who is depressed needs to be on medication.  The best thing to do is look to see if there is a mental health clinic there in town and make an appointment.  When you go in, they will do an intake evaluation to see what is going on and what you would need for treatment.  You may only need to see a therapist for a while to deal with the issues of what you are going through.  A therapist would be able to make a determination if you would benefit from some type of medication and would then refer you to the doctor at the clinic there who would then evaluate you to see what would be best to take.  Some who are going through a severe depression would benefit from some medication for a short while along with therapy to help them get through their issue and not remain on medication forever.

If medication is needed, the best thing is to take meds along with therapy.  I cannot see how depression alone would keep you from being on the wait list.  I think they look more for other mental illnesses like Paranoid Schizophrenia that could maybe keep someone from thinking rationally and making good decisions about their health.  Asking for help when you are dealing with such a big health issue would show that you ARE willing to make wise decisions concerning your health and you are looking after yourself to keep you in a mindset to protect your health.

It does make me sad to see how our society treats mental health issues.  The way it was explained to me was by comparing it to someone who has diabetes.  No one would question you about your decision to see a doctor and to get the proper life saving medication to keep you healthy.  It is the same with mental illness.  Mental Illness, not just depression which everyone some time in their life goes through, but true mental illness is a chemical imbalance in the brain and all that medication does is replace those chemicals in your brain.   

If you, or anyone else, would like to talk, just let me know and I would be willing to share my experiences and the road that I traveled to get to the point I am in. 

[Restorer]

These people are not stupid, so don't assume that they aren't going to see right through your "I'm so happy" act. 

I don't know, it seems to have worked fine so far. The only mental health questions I remember from the transplant social worker at UCLA were along the lines of, "How are you handling things? Are you adjusting well?" and "Have you had any problems with anxiety or depression?", to which I answered, "Yeah, I'm getting through it. *shrug* I'm dealing with it." and "Nope," which covered two checkboxes on her clipboard, and that was it. Of course, I wasn't going to answer any differently after she insisted my mother be in the room too.

The only time anyone showed concern was after it was confirmed that I couldn't do PD any longer, and I was angry enough (just once) to not bother to seem happy when the social worker at my previous clinic asked me how things were. She left a note to the techs to make sure I watched a series of videos on coping, and that was it. No further questions.

There are all sorts of ways to find a good psychiatrist in your area. I know a great one in Long Beach - she specialises in cancer patients and receives calls from all over the country for help. If it's not too far, shoot me a PM and I'll dig up her name. Yes, I've gone to her, and I would still be going to her if we had not moved.

I won't even be attempting to find a psychiatrist until after I move to Sacramento, so that's not so much an option. Thanks, though.

I've also always had the sense that the medical people here want us transplanted and that they aren't looking for ways to stop that and keep us on D.  It costs our country too much and no one's making money from it.

Here, the social workers work for the dialysis companies, which are in it for the profit. It's hard to rely on anyone at the dialysis clinics to help you toward a transplant when it means their company loses a customer. My current clinic social worker in particular seems way too reactive and not at all proactive. It took 3 weeks and nagging from me (and it's hard for me to nag!) just to get her to talk to the clinic I was visiting on a trip to get them my records.

About the social worker - the one at Northwestern said she would 'pass' me, or whatever the term was, if I promised to make an appointment with a local therapist and give her the contact information. I promised. And I lied. And I'm glad I lied. I did end up seeing a psychiatrist, for my own reasons, not because some blithering idiot of a social worker told me to, and I told this woman (the psychiatrist) that I had no intention of letting this social worker within a hundred meters of my mental health records, and she totally agreed with me. She offered to write her a letter telling her to piss off (in a professional way, I am sure) but Northwestern had already demanded that I sign all of my right to privacy away, meaning that if they could find a place that had my records, they could request them.

(Note to self, revoke that right from them! I must check that that has expired!)

I thought there were laws that protect mental health records more than other medical records. Was that just for family and patients? I seem to recall something along the lines of limiting information to, "Dr. Whoever is treating this patient [for anxiety and depression]," but going no further. Does a Release of Medical Records waive that too?



I don't know what I'll do. Getting therapy is my first priority once I'm moved and settled, but I'm not sure how I'll go about it. What if I'm asked about how I'm doing or how my mindset is at the new clinic? I don't know how I'd respond.

Sorry for threadjacking.

[cariad]

Ah, yeah, Restorer, just reread the part about you moving north. Sorry, memory is going at a pace!

I say UCSF all the way for transplant. I adore that hospital. Dr. Vincenti may still be there and that man is a saint! The social worker part of the eval was a non-event, but then I was coming in as a potential research participant, so that seems to make screening much more automatic and lax.

My experience also flies in the face of the "these people are not stupid" theory. I think most of the social workers do a ridiculously poor job in screening people, and there seem to be no set guidelines, it is all opinion. Horror stories abound. I read a presentation from someone about rejecting candidates, and it was for reasons like "his support person did not come with him to the eval". It is completely outside of their purview to make diagnoses or analyze anyone, and transplant social workers, in my experience, are definitely THE WRONG people to discuss help with depression. The suicide rate among transplant recipients is 75% higher than the general population, so obviously something is amiss there. Any therapist who specializes in chronic illness should be able to help you. I know one, but I think she's in Palo Alto, so hours from Sacramento. I can tell you what they will suggest - my cousin is about your age and has terminal brain cancer. They will recommend finding something - a job, a volunteer project, school, anything to concentrate on to get you outside of your own head. It really does work. Meds are helpful for some people, and that is mostly what psychiatrists do, although the ones I saw would just talk to me because I gave up on meds.

Restorer, obviously my situation is different to yours. They handed me a form and told me (very loudly and anxiously) not to date it because then it would expire. So, now that I've got what I wanted out of them, I need to make sure that right is taken from them. I probably would have signed nearly anything at Northwestern because I was trying to look like the most eager, adherent, easy-going patient ever encountered. I was asking for a tremendous favor from the surgeon, and certainly I think not cooperating cheerfully with these small requests can make you seem a bit obstinate and possibly like you are hiding something. If it had been ANY other hospital, forget it. You'll get my records when I care to give them to you.

If they had found any of my mental health records (and there was no chance of that, I never went to any via referral) then the social worker probably would have requested them, thinking that we had agreed that she could read them, and it probably would have been a mess had she tried, not succeeded, and then come to me for permission to access the records. As it was, I was reminded a few times to see a counselor of some sort by my transplant coordinator, but once my surgeon decided he wanted to work with me, he overrides everyone. My coordinators switched to two research professionals, and the social worker had absolutely no say in what happened, and it was brilliant having her kept away from me. (My surgeon could not even remember her name, and I think she had been there a good long while.) The only time I saw her again was after my transplant, she invited herself into a consult with my surgeon and wow, had her tone changed. It was all deferential bs from that point forward. You know, after 34 years with a transplant, I will grant everyone that I truly resent being made to prove myself to some stranger who had no right to demand privileged information between me and a third party. There was no redeeming herself after that nonsense.

[Riki]

Cariad, I think that social workers in Canada are a bit different than in the US.  Generally, Renal Social Workers are trained as counselors as well.  If they believe that you have a mental health issue that they can't handle, they are allowed to refer you to someone they believe can.  There was a social worker in Halifax that I really liked, and I was able to talk to her about a lot of things.  Unfortunately, she has since retired, so I can't go to her.

Monrein, all I was told was that there were massive amounts of scar tissue on both of the transplanted kidneys.  The first one, I understand.  I had it about 8 years, which is about average for a cadaveric kidney.  The second one only lasted 3 years, and it was covered in massive amounts of scar tissue as well.  I would have liked it if someone has looked into it, to see what had caused the scarring, but as far as I know, no one ever has, and the demise of the second kidney was blamed on me.  I distinctly remember complaining about pain around the kidney less than a year after I got it, but I was dismissed by most of the doctors that I saw, one even telling me that it was all in my head.  I often wonder what would have happened if I had been taken seriously then, if I would still have that kidney now.

[cariad]

Cariad, I think that social workers in Canada are a bit different than in the US.  Generally, Renal Social Workers are trained as counselors as well.  If they believe that you have a mental health issue that they can't handle, they are allowed to refer you to someone they believe can.  There was a social worker in Halifax that I really liked, and I was able to talk to her about a lot of things.  Unfortunately, she has since retired, so I can't go to her.

Monrein, all I was told was that there were massive amounts of scar tissue on both of the transplanted kidneys.  The first one, I understand.  I had it about 8 years, which is about average for a cadaveric kidney.  The second one only lasted 3 years, and it was covered in massive amounts of scar tissue as well.  I would have liked it if someone has looked into it, to see what had caused the scarring, but as far as I know, no one ever has, and the demise of the second kidney was blamed on me.  I distinctly remember complaining about pain around the kidney less than a year after I got it, but I was dismissed by most of the doctors that I saw, one even telling me that it was all in my head.  I often wonder what would have happened if I had been taken seriously then, if I would still have that kidney now.

Riki, after the treatment you've received from your medical team, I am surprised you can ever trust any of them again.

Social workers sound about the same in the two countries, but in theory renal social workers at a dialysis unit would get to know you over time. The transplant social worker, if one's transplant experience is anything like mine, you meet once and never see again. I am sure if I had wanted to see her again I would have had no difficulty doing that, but no interest there. Trust is crucial, and the eval set-up does not allow for trust. I'm sure I've mentioned this before, but at the USC eval the nurse coordinator's first words to me were "We're going to be judging you, you know." A stunning lack of professionalism, and any hope that I would entrust my life to them was over before it began. I lived in LA back then, I could pick and choose any hospital I wanted.

I guess I am feeling (not from you, Riki) that this has become a somewhat contentious topic. This is only what has worked for me, I am not trying to dictate anyone else's behaviour. Chances are good that if I had been totally honest in my answers, all would have come to the same conclusion, but I frankly don't confide in people easily and as I said, I resent being asked to prove myself like some fresh-off-the-diagnosis transplant novice who is going to ask them questions like "how long does a transplant last?" (Ack, no, I really don't need to see that graph again, thanks.) Perhaps you feel the same way - we've done this our whole lives, longer than most doctors, just look at my chart and make sure surgery won't kill me and I'll be on my way. Especially by my fifth eval in as many years, I was not willing nor even quite able to reveal some poor, damaged psyche. I was excited about the direction that things were going and just so ready to get on with it that I was not scared, I was not depressed, I was just entirely focused on what I wanted and how to get it NOW. It was like being told I had to repeat algebra - but I passed algebra ages ago! One of the coordinators even demanded to know why I was not afraid of transplant. I guess if I had been prepared for the question, I could have answered - My alternative is longterm dialysis. Which one scares most people more?

Riki, it does sound like your options are sharply limited. If you want to try antidepressants rather than talk therapy, I think a trip to wherever you need to go to feel comfortable is in order. If the antidepressant works, you could probably just do phone consults for the monthly med check. I am approximately 2 hours from my transplant center, and it was not always easy, but so worth it. Depression is a monster, you may have to work harder than you thought possible to overcome it.

[Riki]

Halifax is a 4 hour drive, depending on which way you go, and it's outside the province.  Since I live on an Island, it's either a bridge or ferry, either of which can be closed on a moments notice if the weather kicks up. I prefer not to make the trip. I'd much rather stay in my own province if I could, but mental health services here aren't exactly the greatest.  I'm not even sure what my options are.  Going to the nurses would really be the only way to know, and yes, I do trust some of them, but not all of them.