I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: F.A.Q. (Frequently Asked Questions) => Topic started by: Riki on July 28, 2011, 11:24:24 PM
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How do I broach the subject with my nurses/doctor? My best friend believes that my tiredness whether I sleep or not, my not wanting to go anywhere or do much, and my feelings of not being wanted by anybody are all signs of depression, and I think she may be right. She tried to talk to my mom about it, but Mom dismissed it, saying that depression comes with the disease, which it does, but that's beside the point. I don't think the tiredness/lack of energy is from bad dialysis, because my last labs were the best I've seen in years (I actually think they got my blood mixed up with someone else's at the lab, but that's another thing all together), but I'd like to know for sure, and if it is depression, be treated for it. I know I don't want to feel like this forever. I just don't know how to bring it up to the nurses. I'm wondering if anyone has any ideas. I'd like to get it dealt with now, before it gets worse and I do something stupid. I have done in the past, and I've been lucky enough that the stupid things I did were not life threatening.
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:cuddle;
Yup - it comes with the disease, as your mom says. But it can be treated, too! Good for you for wanting some help.
Who do you feel comfortable with from your medical staff? It doesn't have to be a nurse or a tech. You can start with the doc, the social worker - anyone at all. I don't think you have to say much past, "A number of my friends are worried that I'm acting depressed. I think they might be right and I'd like to do something about it. How soon can I talk to someone about this?" If you aren't comfortable talking about it out loud in center, you could also write a note to pass to them and ask for a private moment to discuss depression and treatment options.
This crap disease is an emotional roller coaster - you are entitled to all the extra straps to hold on to that you can get!
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*hugs*
Of course you're wanted - we all love you!!! Not to mention your family, your best friend, your loyal kitty Reese and of course all the guys who saw you down the beach... >:D
Anyway I don't think you should feel afraid or silly to raise the subject with your neph to get a referral for some help - or ask for the unit's social worker to refer you to someone. Your mom is partly correctl I think, in that yes, depression comes with the disease, but it's not right to dismiss it - you have the right idea to get some help - and that's the BEST thing of all - you recognise there may be something amiss and WANT to do something about it. That's a very positive thing in my view!!! When depression sets in but you can't recognise that there's something wrong, or indeed go into denial and believe there's nothing wrong - well that's very dangerous.
jbeany has a point about talking to someone you feel most comfortable with. If you can bring it up here I'm sure you can bring it up with the medical professionals you talk to. Remember, this kind of thing shouldn't be unfamiliar to them, and indeed they may have noticed something themselves anyway.
I remember this one time (not at band camp) I went to clinic and I had a specific question that was quite personal (related to sexual function) and of course that time I got the young (female) registrar. So I was sitting there feeling a bit silly or a tad uncomfortable bringing it up wth her but then I realised that she's a doctor. She trains to deal with this stuff. She may seem young but I bet it won't be the first guy to ask her about stuff like this, or the last, and it's not like it was an inappropriate question or anything, so I went ahead and asked. She was cool as a cucumber, understood the issues I was getting at, and helped put my mind at ease with explanations and so on. All matter of fact, and by the end I wondered why I felt weird about bring ing it up. :rofl;
Hopefully you can feel OK about asking for some help. The best part, as I wrote above, is that you want to seek some help to get out of this funk, depression, whatever it is... that's a really GOOD thing.
Hang in there and let us know how it goes!!
:cuddle; :cuddle; :cuddle; :cuddle;
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It very common to gave depression along with ANY, CHRONIC illness. Symptoms of dialysis and depression can ccross so it's hard to tell. Tiredness, sleeping, lack of motavaiion etc... are from both. Anxiety is also a symptom of depression. It doesn't always mean hanging your head. There are different forms of depression. I think if you bring it up to your health care workers you'll be very suprised to find out just how many on dialysis are using an anti-depressent. They aren't always major physc meds, often just something to "take the edge off" and you don't even know your on them. There is no reason you would be unwanted! I as a caregiver for one, admirer your strength because I kow all you go through. No one is perfect and everyone has something in life they have to deal with. There is someone for everybody. Many of the anti-depressents take a couple weeks to take fulll effect so yes, it is best to deal with it now. Unless you have something else that you're dealing with in your head, you may even be put on a "mild"-if I can call it that, type anti-depressent such as Lexapro or Celexa. I'm sure you're Neph can even start you on one in the time ebing. One that is kidney safe of course. In your best interest, you should see a physcologist(?)-physciatrist(?) (not sure the right one) to get a proper diagnoses. Don't feel funny about it PLEASE. In this sometimes crazy kind of world we live in, it's easy to get over whelemd with things. We are only human after all right? You hang in there until then. Come here when ever you need to! Several times a times a day if you need it. If anyone, nurses deal with this all the time. Don't feel they would look down on you or anything like that. They are nurses because they WANT to help. I'm giving you a super big hud right now. I hope you can feel it! The kind where you get squeezed so hard you can't breath lol. Carolyn
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Just make sure you don't have Nurse Jackie looking after you!!! :rofl; :rofl;
(love that show!)
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You know what, it really pisses me off that the state of someone's psychological/emotional/mental health could be so easily dismissed and disregarded. Yes, for a lot of people on dialysis, depression is part of the disease, but so is high serum potassium, high serum phosphorus, protenuria, high blood pressure, high blood lipid, poor fluid control, poor mineral metabolism, yet we go through enormously invasive treatments (dialysis/transplantation/meds) to treat those maladies, so why, if the body is being treated, is it so bizarre to think to treat a patient's mind? I just soooooo don't get this.
And why should it be so difficult to approach someone from your medical team to alert them to this particular symptom? (I'm using "you" in the third person!) If we were cramping or feeling lightheaded or our bones were breaking when we sneezed, we'd certainly tell someone. So why should any of us keep our depression as some closely guarded secret?
Depression in CKD is so common that if you were to mention it to your doc, he wouldn't bat an eye. Your emotional state definitely is a big factor in how energetic you feel...or not. My husband and I were talking about this very thing just last night. I told him that if I were to be very honest with myself (and I'm always very honest with myself, which isn't always a good thing because sometimes I'd love it if I had a pair of rose-coloured glasses), a good measure of my fatigue comes from just being scared, resentful, angry and depressed. I notice that I feel a lot better physically when my mood is brighter.
We are more than a pair of clapped out kidneys. We are whole beings with brains that can become depressed from all sorts of things, and you deserve to have that part of you treated just like your body receives treatment. Life is miserable enough with this disease, and we all owe it to ourselves to make sure that ALL of us, mind AND body, gets proper attention.
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Riki - so sorry to hear that you are depressed, though as others have said, not a surprising state of affairs. I have had no luck with antidepressants nor counselors, but I do know that the renal-impaired almost always start on Lexapro (don't know if it goes by another name in Canada).
I come from the old-school when it comes to mental illness and transplant. So, while I agree completely that you should seek out treatment, and that you should not feel stigmatized, I would never have let any nephrology related medical professional in on something like that. This is me thinking always in terms of 'how will this affect my transplant options?' People are kept off the list for mental health reasons, so I will forever fake it in front of that crowd. This has served me well, I have been diligent in presenting myself to any transplant professional as some bubbly, happy-go-lucky lass who probably seems to never quite live on planet Earth. If I needed to fall apart, I would go to my GP. Any mental health professional I ever spoke to was not authorized to speak with any of my other doctors - thankfully we have laws for that these days in the US. I don't want to scare you out of getting some help, just do be somewhat selective in whom you place your confidence.
I want to wish you luck, and remind you of how much you are wanted and needed here on IHD. :grouphug;
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The nurses are probably the only ones I could go to. The Neph is useless, and so is my GP. My problem with going to them, was the last time I had an issue, something that scared the crap out of me, the head nurse laughed at me.
There is one nurse, though, who is actually a neighbor as well, who I told I had less energy and was tired, even though I was sleeping. She asked me if I was depressed. I told her that I didn't know. When I told my best friend about this conversation, she told me that I should have said yes.
Thanks for the replies, everybody. I actually teared up while reading through the thread
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Riki, it would be all well and good to tell this particular nurse that you suspect you may be depressed, and she will probably be sympathetic, but she will not be able to actually prescribe anything to you. If you think you want to try medication, you will have to speak to someone who can prescribe meds, so if you really think your neph and your GP are useless, you may have to go to a psychiatrist. Anyone who can prescribe something for you will need to be aware of your renal problems, but there are many anti-depressants that are safe for dialysis patients.
Here's the thing...battling any chronic disease requires a great deal of psychological strength, and depression will sap the very energy you are going to need to cope with dialysis/renal disease. Don't sabotage yourself, OK? :cuddle;
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Riki - I too get pissed about people's dismissive attitudes about mental health. My boyfriend is the one going on dialysis, but we both have depressive tendencies and we have to look out for them. I have taken a number of anti-depressants in my time and each one is different. You have to find a doctor you can trust to help you navigate them and you have to be honest about whether something is working for you or not. I do not know the possible contraindications, but if you want to avoid another med, there are non-prescription alternatives. St. John's Wort is one that a lot of people take. 5-HTP is another one and I am currently taking it. It works in a subtle way that keeps me in a place where I can function. When I'm really depressed I can't do much of anything. Trust that the people you're dealing with are professionals and if one doesn't act like one, kick him/her to the curb. :cuddle;
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Riki, if you decide to go the non-prescription route as drgirlfriend suggest, you MUST ABSOLUTLEY BE SURE that what who take will not harm you. St. John's Wort is a definite no-no for someone with renal disease. Just because something is "natural" doesn't mean that it won't kill a kidney patient. You can always speak to a pharmacist about which OTC drugs/supplements would be useful for depression and is also safe for you. I personally do not take ANYHING without getting the OK from either my neph or pharmacist. You would be surprised (well, maybe not) how many things out there can do serious harm to someone with impaired kidneys.
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Riki, I know that you are in PEI and since that's a pretty small place things can get tricky when it comes to the doctor situation. Can you try again to see and talk to your family doctor or your neph and directly raise the issue of depression? Is it at all possible to change family doctors? That may be tough even in Charlottetown if doctors are scarce. As MM so correctly points out, the nurse cannot prescribe so I think you must try to get through to a doctor. I'm not sure about a psychiatrist, of course they can prescribe but a referral could be tricky in PEI. I'd try to see if you can connect at all with the dialysis social worker....some are great, some are total nimnods so it's a crap shoot but still worth a shot. Their job is to help with issues like depression so you might get lucky there.
Also try talking to your Mom again and even print out some of these replies to help her to take your feelings seriously enough to get some extra help for you. I think she probably does take them seriously but may be at a loss herself about what to do.
Please be very wary of over the counter things for depression or anything else for that matter...best to have a doctor prescribe and even then best to check with the pharmacy and/or neph if it's OK for your kidneys.
I hope you can move out of the shadows and feel better. :cuddle;
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There are no psychiatrists on PEI, so if I wanted to see one, I'd need a referral to go to Halifax. Talking to the nurse is the only way to get the doctor to come see me. Like I said, he's useless. The nurses pretty much do everything anyway. They just get the doctor to sign everything.
I don't know what the social worker can do, because I haven't officially met her yet. We only just got a renal social worker on PEI in February or March, and I haven't had a chance to meet her yet, except for a few minutes at the World Kidney Day meeting.
There's no changing family doctors either. Every time you turn around, there's another one leaving, or being forced out because they do things differently or are a little outspoken. There's a list as long as your arm of people waiting for a family doctor who have none. I'm kind of stuck with the one I've got. I'm sure he graduated from med school at the bottom of his class
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All of that is exactly what I was concerned about. PEI is such a beautiful but such a small place. So, please try talking to the nurse again and don't minimize how you're feeling...also ask if that spanking new social worker could meet with you ASAP. :cuddle;
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About herbal products: There is another "well-being" herbal called Sam-E. I would have to guess definetlya no no for a kidney patient. Also, one called Kava Kava, can damage the liver. You have to be real careful with these herbal drugs. They are not FDA regulated, and are conttrolled by the makers. I'm not saying that there arren't many of them that can be beneficial to certain people, just to watch out and ALWAYS, ask your Dr. before taking anything. As with prescription meds, some are excreted through the kidneys, some the liver. I imagine with herbals also. I have friends who take some herbal supplements. They do not have CKD though but they insist the ones they take are helpful. Now, if they can only come up with one little teenie-tiny pill that makes everything perfect right!? LOL LOL ....I guess we'll waitinga while on that one hee. Have a great day everyone!
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Right then.
I've been fighting the idea that I might be depressed for a while now too. I'd like to talk to someone about it and move toward getting help, but I never feel like I can bring it up with anyone at the clinic (plus other complications with where I'm living now). I'm moving later this month, and I want to bring it up at the new dialysis clinic. It seems like it might be easier to imply, "Since I've just moved here, I need a recommendation/referral to a good psychiatrist," instead of, "I might be depressed but I don't know and I don't know who to talk to and can you help me?"
But there are very few people I'm comfortable enough with to talk to about this sort of thing - close friends, and through the anonymity of the internet. I never feel comfortable bringing up most sorts of problems on the clinic floor, surrounded by nurses and techs and other patients, but it seems no one has time to consult with me privately (that may be part of my head-problems I need to discuss). So I have the same problems and I don't now how to solve them.
cariad reminded me of the other issue that I had almost forgotten. I'm on the list now at UCLA, but I need to get listed at other centers. Is seeking help for depression and anxiety going to affect me? Is there any way I can minimize that? Up until now, with any medical professional, I've been cheery and "oh yeah, doing fine" and everything, hiding my problems so they wouldn't give me more problems.
I'll be watching this thread for help.
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Restorer, do you really need to ask anyone in your clinic for a referral to a therapist/psychiatrist? If you are uncomfortable asking anyone in your current or new clinic about this, can you not perhaps find one on your own? Finding a "good" psychiatrist is a rather hit and miss affair because not only do they have to be competent, they also have to be a good fit for you. Your clinic won't necessarily know who might fit you, so why involve them at all?
When I went for my pre-transplant evaluation last year, I was required to make a second appointment to speak with the social worker. So I had to troop all the way back over to the city to talk to this lady; mostly it was about how I was going to get to my post-transplant appointments, etc, but we did talk about the psychological trauma of kidney disease. She told me about the seven stages of grieving, blah de blah, and that she has observed that most patients get stuck on the anger stage. And she was quite open about the sense of loss that kidney patients feel, so I am not really sure why people think they have to pretend to be so happy whenever they talk with their transplant center. My coordinator had been a dialysis nurse for 13 years, so she'd seen the whole range of emotions in her patients. They are well aware of the toll this disease takes. And they are probably well aware that people trying to get/stay on the list engage in this little charade so they won't be disqualified.
Your transplant center wants to make sure that you are psychologically fit enough to endure the rigors of the post-transplant period. Now, I'm certainly no expert in this regard, but they want to know that you are going to take care of that kidney, and if you've read any of the posts by our post-transplant IHD members, you'll know that transplantation is no picnic. They don't care if you are depressed or if you're angry at the world, but they DO care if they see that your depression or anger leads to such inertia that you might be unable or unwilling to get to your appointments and take all your meds. Frankly, I don't know if they care that much about you as a person; I don't know if they care if you are happy or sad. They just want to protect that kidney. I've been stuck in anger for years, but that doesn't keep me from following the diet, taking the pills and doing all of the other crap one has to do to survive this wretched illness. But no one asks me about my emotional state; they just want me to jump through all of their little hoops.
These people are not stupid, so don't assume that they aren't going to see right through your "I'm so happy" act.
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I'm just thinking here for a minute and it has crossed my mind that if you feel uncomfortable using the term "depression", you may want to address the conversatation more in the words of "I'm feeling a little over whelmed" or something along those lines. Just a thought! Often we feel souncomfortable talking about our feelings and emotions but our emotional health is equally as important our physcial.
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Of course, asking someone in my clinic isn't necessary, but it could make finding a suitable therapist/psychiatrist easier, and isn't that what a social worker is for? They probably know of psychiatrists that have experience with ESRD and take Medicare. They might not know one that fits me, but I'd have no better luck calling around. Plus, I really don't like talking on the phone, especially cold-calling.
The reason I put on a happy, confident face and say "Yeah, everything's fine" is because it's really hard for me to open up to anyone in person. It's frustrating enough telling 5 different people about my physical medical history at a transplant evaluation. Going into my feelings is really hard, and I haven't yet met a social worker I felt comfortable with.
I'm not worried about that inertia you mention. The only appointment I ever missed was when I was in the ICU on a ventilator. I've never missed dialysis. It isn't messing with my treatment.
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Since you're moving to a new clinic, could you make a deal with yourself that one of the first things you'll arrange is to ASK for a meeting with the social worker, not while you're hooked up but before or after (just say that treatment messes with your head a bit and is too public). At this very first meeting, try to bring up the fact that you've been struggling for a while but have avoided talking about it or even thinking about it but now it feels like it's getting to be too much. You could also mention that you're a pretty private guy and you've found it hard to feel comfortable with any of the social workers you've met (I'd probably say something like "don't know if it's me or them but anyway I've just kept things in and I'm feeling a bit behind the 8 ball at this point...and I don't want to keep feeling this way".) Of course this new worker could be useless or excellent or any place in between but hopefully she'll try a little harder with "the new guy". You could ask if she could recommend someone with experience in dealing with ESRD and the issue of depression and see what happens from there. I really hope you can find someone you can connect with and feel comfortable talking to. :grouphug;
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It occurs to me that I could attach it to the issue of getting a fistula, which I'm sure they'll push me about. I haven't gotten one yet, mostly because of body image issues.
:stressed;
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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!)
Restorer, it probably would not affect your transplant chances, but you are trusting another person to not put their own negative interpretation to your mental state. They work for the transplant team. (and I absolutely want to punch something when I have to read those treacley words about how patients are the most important member of the team - wouldn't you pay your most important teammate?) Since it is not in your best interest to disclose these issues to a transplant social worker, they should immediately refer you to a personal therapist so you don't inadvertently shoot yourself in the foot. But just because they should does not mean they will. 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.
Good luck!
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I feel I need perhaps to apologize for "forgetting" or at least neglecting to remember that I live in another country which at times feel like another planet when we talk about some of this stuff. I've never worried about medical social worker treachery although I've certainly encountered incompetence which can be horribly frustrating. Same goes for the stupid nurses, doctors and technicians who seem to work in their fields too.
My experiences with transplant social workers have been generally positive but they don't provide counseling services, and the social workers assigned to dialysis patients can be useless or excellent depending on who you get. The good ones raise the issue of depression themselves and expect it to go with the territory. 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. But hell, way back when I was feeling as though my life had ended I just ended up blurting it all out and crying with my neph himself who said I needed to talk to the social worker who then arranged a referral to someone outside the hospital. Felt normal to me.
I also did a social work student placement in a hospital here, in the dialysis unit as a matter of fact and talked about depression with patients and doctors all the time. To NOT do so seems like talking about hemodialysis without mentioning blood.
Bottom line, Restorer, I hope you can find someone to help. :cuddle;
You too Riki, although I know that your situation is limited by the limited resources in PEI.
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Riki - there has to be someone who does some kind of phone consults - at least you would think that would be the obvious answer. Or, oh yeah - web cam! Then you would still be face to face.
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I really don't know what there is. I know that years ago, as part of his job, he had to see a psychiatrist, and to do that, he needed to go to Halifax. I'm not sure what, if anything, has changed since then.
I know I need to see somebody. I've looked up some of the things I do online, and some of them look to be anxiety disorders linked to depression. I know I have a family history, which makes me wonder, if I didn't have kidney disease, would I still be doing these things? I also wonder, if I didn't have kidney disease, if my mother would dismiss any idea of me being depressed so easily
As for malicious social workers, monrein, I have had one run in with one, who, along with a doctor who was on the transplant team, tried to keep me off the transplant list. They believed that I was deliberately sabotaging my transplanted kidneys, because I'd lost 2 in less than 5 years. I also think that's part of the reason I've been waiting 7 years for the next one.
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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.
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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.
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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.
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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.
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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.
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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.
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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.