Organ Transplant Community

I know that some of the meds can affect your mood. Prograf gave me depression and I was on Welbutrin for a while and that helped a lot. I believe also that prednisone can affect your mood. It is possible that you already had an underlying condition and that either the transplant itself or some of the drugs brought it to the foreground.

Sorry I can't be more help.

Cora

Okay, well, since no one else seems to want to address this question, I'll address it myself. I'm betting there is a very close link between the anti-rejection drugs and mood disorders, and one of the things that truly disturbs me about my own transplant journey is how little my transplant team revealed at the time of the surgery about the repercussions of certain medication. Let's just save the person, and forget about quality of life questions. But I now am in my mid-thirties and have the osteoporosis of someone in their mid-seventies. That's just one example. I think young people, minors in particular, should be honestly confronted with what a transplant will mean, short- and long-term, insofar as they are capable of understanding. If they are too young or too sick to be able to understand, there should be a patient advocate who stands up (even to the parents!) and says, "Hold up: if saving this person's life is only possible through a transplant, fine; but here is what you need to be able to expect afterward, especially as concerns the medications."

Thanks, Cora. As you see below, I was already becoming convinced no one wanted to even explore the topic with me. Thanks again for your help. What kind of transplant did you have, and how old were you? My liver transplant took place in 1989, when I was 16.

I was 11 years old when I had my heart transplant. I am 22 years old now and have been waiting 2 years for my second one. I feel very strongly about what you are talking about. I was never told what my life would be like after my transplant. It was just "you are going to die, this is the only way to live, you'll be completely normal afterword except needing to take care of yourself and take medicine the rest of your life". No one told me that the medicines I was taking would complicate my actual personality! I have memory problems, weight issues (either gaining or can't gain), muscle degeneration, increased cancer risk, and like you- osteoporosis that makes my joints and back feel like I'm in my 70's, not barely in my 20's! I have to say that I do not believe you had a condition beforehand. Although that's quite presumptuous of me. I also believe your battles with depression probably aren't caused by the medications. Exacerbated by them? Yes. Caused by? No. I think people can have Post Traumatic Stress Disorder from their experience. There are intense feelings associated with having a complete stranger's (a dead stranger's no less) organs replace yours. I personally hate the term "gift"...as if some young teenager willingly went brain dead and the cosmos be-gifted me her heart. I am not a miracle, I am a person. Yet it is taboo to talk about because we transplant recipients are supposed to be blank, emotionless robots who are just so happy about being alive that our human feelings are void and prohibited. If you are depressed, you're ungrateful. If you are anything but a bouncing bubble of joy then you are ungrateful. And it's not fair. Like I said, any "mood disorders" you are experiencing are probably being made worse by crazy transplant medication, but probably not caused by them. The complete lack of acknowledgment and denial of the importance of your emotions is enough to make anyone a little crazy. Don't get me wrong, I am very glad to be alive (most of the time), and I am very grateful that my donor was indeed a donor...however I am not willing to ignore the fact that no one told me anything about the reality of living with a transplant. I completely agree that there should be advocates...perhaps people like you and me...who don't try to discourage people from getting a transplant but really give them the straightforward facts. What's so wrong with being honest? I am glad to hear that someone else feels at least similar to me!

Well, see, I was born with a very rare liver ailment, Alpha-one Antitrypsin Deficiency, which basically meant that the older I grew, the less oxgen I was getting, until, at age 12, I started on supplemental O-2. At first, it looked like a lung problem...emphysema being the most likely diagnosis...until at age 5 we discovered the Alpha-One. From then on, and especially as I got to 10, 11, 12...the illness started picking up speed. Everything physically got "set on the backburner", so that after the transplant I had lots of "catching up" to do. But on one side of my family there is a history of emotional problems, though my Mom (representing the other side) refuses to acknowledge this. So it's pretty scary, how depressed I can get, how much Despair I can feel...and if it isn't medically-induced, then it must be genetic, something else I can't control.

I have to admit that, though I've encountered Post Traumatic Stress Disorder in others (not transplant patients, otherwise healthy people) and this had never really occurred to me before as applying to myself. But I totally agree with you that, unless a transplant patient is jumping for joy over their surgery, they're deemed ungrateful, and their feelings completely disavowed...it's almost like, to a healthy person, a sick person is that sickness...not an actual person themselves. Heaven knows my mother still treats me (after all these years!!) as more of a disease than a person. But we DO have needs and feelings that not only need but deserve to be acknowledged and affirmed. I couldn't agree with you more when you say, "I am not willing to ignore the fact that no one told me anything about the reality of living with a transplant". That statement strikes at the very heart of the Issue, the Central Issue, for me as well. Thanks Luci...

Hi guys. I've been reading this thread with interest. I was diagnosed with type 1 diabetes when I was 2 (in 1966). So I'm no stranger to needles, doctors, bloodletting (pardon me, labwork) etc. It is hard, isn't it? There is no doubt that depression, anxiety and other mood problems are side effects from the transplant drugs. But that said, you need to keep in mind that everything in life has a cost. There is no free ride and there is always a trade off, no matter what you do. This is true for medical issues, as well as life issues in general.

Myself I am no stranger to depression. I had it off and on from the time I was in my teens. It was bad while on dialysis and got worse after the transplant.

I spent a tremendous amount of energy trying to keep myself positive. It is a lot of hard work and you need to keep in mind and keep near to your heart those moments of joy and wonder that can still happen even when you are not feeling well. You definitely would not want to give those up, to have never had them, if you had the choice. I would never have witness the birth of my Mom's dog's puppies. I wouldn't have met the man of my dreams and gotten married this past year if I had made the decision to not have the transplant.

I think sometimes the transplant teams don't take it as seriously, but you need to make your concerns well known and demand some help. Some solutions. Try to remember that no matter how badly you feel, there are always people worse off. People who never get the chance at a transplant. And there is always something to enjoy or to look forward to. Sometimes it just takes a lot of effort to see that. Believe me, I know how hard it is and never be afraid to vent here when you need to. But also remember that there are lots of wonderful things in the world too.

Cora

Hi there,

NotYetAlive, I have experienced similar problems to yourself. I have been on Cyclosporin for twenty years (since I was 10 years old) and I have no doubt that the mental dullness, anxiety and depression I've experienced in that time are due to the tablets. No doubt at all. Doing some research on my drugs has revealed that they are well known to cause 'neurotoxicity' (as well as nephro- and cardio-toxicity). They basically poison the brain and central nervous system.

Having said that I have had some success in controlling my side effects with nutritional supplements. It's an inexact science and I been getting particularly troubled by memory problems and a general mental dullness lately (which is my line of work is really unwelcome) which I haven't been able to sort with supplements. I also get very distressed at the unconcern of my doctors when I report such symptoms. I'm over here in the north west of England, and feel frustrated at the lack of support.

NotYetAlive, which drugs are you on for your transplant? Prograf is it? I would like it if you emailed me, and I can perhaps point you at some studies showing the benefits of nutritional supplements with drug side effects, or we can have a general chat. Email at cab dot consumer at gmail dot com

I will continue to read this forum with interest. We need to support each other guys. Carl.

Hi Carl,

Thanks so much for the message. I was on Cyclosporin for a time, but haven't been for many years now. These days it's basically just Prograf, 2 mg per day. That's the main one, along with CellCept and Ursodiol.

I'm intrigued by the nutritional supplements idea, but unfortunately I doubt I could go very far with it; I can barely eat as it is. My financial situation is disastrous, and most weeks I only eat a few times. I stayed in ministry, with the wrong denominaton, way too long, and it got me into a serious medical and financial tailspin.

Anyway, I'm sorry you don't have alot of support out there in England. You alluded to your line of work. What do you do, if I may ask? When I left ministry at the end of 2006, I started overnight in a call center environment, doing customer service calls, and always hoping to find something better for the daytime. Incredibly, however, that "something better" has never materialized.

In any event, please take care of yourself. I appreciate your offering your personal email, but I would prefer to just stay in touch on here, if it's all the same to you. Thanks...

NYA

Hello Cora! I totally agree with you that there are positive things in life, that there are reasons for living and enjoying life's wonderful pleasures. However, I don't really believe anyone was saying differently. I will go out on a limb and say that no one who has had a transplant believes there is such a thing as a free ride...we understand more than most that in order to survive, sacrifices must be made. We were only pointing out that as children, we should have been told about the actuality of the situation. Would we still have accepted the transplant? Probably, but at least we would have known to expect the severely stark contrast in quality of life! This is actually my main point! Anytime a transplant patient brings up depression, it is met with the same tired rhetoric..."oh depression's normal, but just remember, your ALIVE!" and "other people are worse off because they didn't get a transplant." These are unfair responses. It is not fair to ask someone to deny very intense, very real feelings simply because someone else didn't get a transplant! It isn't fair to expect people who go through serious life altering traumatic experiences to just wash away negative feelings with a happy face and to grin and bear it because "hey, they're alive". Of course I'm happy to be alive! It's great! However, I don't want to be denied normal human feelings just because I didn't die when I was 11 years old. No matter how many wonderful things there are in the world, people still feel pain and guilt and sorrow. Those emotions are as real as love and happiness and awe. They deserve to be explored and confronted in an honest manner instead of waved to the wayside with a wand of magical positivity.

Hi Luci.

You've hit the nail on the head. If you can't get satisfaction from your transplant team (they do tend to get caught up in the technical details, not the emotional ones) find a doctor that will help. While it's been a while for me, in looking back I realize that it was my family doctor that got me the help for my depression. It took a while, but I found some meds that worked very well and I was happier and functioning better. Much better able to appreciate the gift I had been given. I ended up on Welbutrin and that worked wonders for me. Helped with energy as well.

Before my transplant I did take some St Johns Wort, but that can interfere with some of the transplant meds and didn't want to risk it.

Take care.

Cora

Well said, Luci! It isn't a matter of being unappreciative of life; it's a matter of acknowledgement and affirmation of normal human emotions, which, quite often when it comes to depression and mood disorders in those with transplants, are routinely not acknowledged or affirmed...least of all by the ones closest to the patient, including the family and the transplant team. The fact of it is, as life-giving as a transplant may be, as you've said, it is indeed a traumatic experience...especially if one is never really emotionally prepared for all that the transplant will involve, and what the repercussions will be. And those repercussions are compounded exponentially when one is not told the truth about the transplant and its aftermath, and when one is not prepared for the outcome. I think pretty much everyone else involved--from parents and other family members, to the transplant team, literally EVERYONE ELSE involved, looks at transplantation from a "right here, right now" perspective, without giving any thought at all to what happens after. "We'll just do this operation and fix this situation...hang the consequences!" But for you and I, and many, many others out there, especially those who were right around our ages when they received their transplants--too young to be out on their own and to be able to make all the decisions without parental influence, yet old enough to have vivid, painful memories, tormenting questions, lingering sadness and guilt, suffocating depression--for all of us there remains the penultimate questions, "Why were we never told the truth about what to expect later? Why were we never given choices? Why was there no one there saying, "Hold up! Dealing with this situation now is all well and good; but how about talking to this young person about what they may be in for down the road?" This did not happen in either your case or mine, and probably not for many other young people as well.

And when you stop and think about it, it really is like the transplant team, even family, seeing the disease or illness but not the human being. It's exactly like you say, Luci, "I don't want to be denied normal human feelings just because I didn't die when I was 11 years old." Nor do I want to be denied those feelings just because I didn't die at 16. Yet, because everyone else was looking at things from a "right here, right now" perspective and treating an illness, instead of treating a human being, here we are years later--11 years for you, 20 years for me...many, many years later--having to deal with the repercussions that are largely related to having never been prepared or given any choices in any of it. I love especially your beautiful statements at the end: "Those [painful> emotions are as real as love and happiness and awe. They deserve to be explored and confronted in an honest manner instead of waved to the wayside with a wand of magical positivity." Exactly. And I am constantly astounded at the fact that the LAST people who ever want to explore and confront those emotions, least of all honestly and sincerely, are family members.

You're in my thoughts and prayers, dear friend. Take care of yourself, and God bless...

I'm sorry to disappoint you, Cora, but I have no intention on taking ANY more medication. Least of all for a simple, normal, emotion such as depression. I do not need anymore side effects like anxiousness, weight gain, nervousness, and insomnia (all effects of wellbutrin). But I am glad it has worked for you, Cora. And I appreciate my "gift" just fine, thank you I don't need any help there. It should be noted that, in determining whether a person is fit for transplant, doctors examine overall health. That includes mental health and the stability of your support system. What's so scary about admitting to a doctor/transplant team that you have serious depression, is that you may be disqualified for a first, or second, transplant. Which in my case is a very real situation. Please understand that I am not lacking in people to talk to about my feelings. I see a counselor once a week, and have friends who are willing to talk with me about everything. What I AM lacking is a support system of doctors- the people responsible for helping me stay alive. What I am upset about is that these doctors and nurse coordinators could do so much for their patients simply by acknowledging their suffering instead of telling them to sweep it under the rug! These transplant teams could connect transplant patients who were feeling alienated and alone in their struggles. There are over 20,000 new transplant patients worldwide, every year! Where are those people?

As for mood changes: Prednisone is a devil. But it bothered me only at higher doses during the first 6 months or so. After it was down to 5 mg/day it was tolerable.

The other drugs can have mental effects too, but they are less universal; some people have big changes others hardly any.

Transplant teams are, for good reason, reluctant to change drugs. They will with enough evidence of physical changes, somewhat less so with mental changes. You might want to get some backup advice from a psychiatrist (who are also MD's) and present that to your transplant docs if the mood shifts are enough of a problem.

Good luck to you.

Hi again NYA,

I too have had problems with jobs and financial things (these days I suspect not unrelated to the drugs effects). I started working recently with a web development company in my home town of Liverpool, England. Only as a trainee, but it takes a lot of brain power to keep the job going (which is why I need to sort the CsA-related brain effects).

I appreciate what you're saying about wanting to find something better job wise. I have been in that situation for years. I wouldn't underestimate how much of an effect having to take these drugs can have upon your work life (you need to have a clear head don't you). It sounds pretty bad that you eat so little.

I can't really emphasise enough the benefits I've experienced with nutrients for my tablet side effects (most of the studies focus on the 'nephrotoxicity', kidney poisoning, that Cyclosporin and Prograf produce). Some can be expensive you're right, though on the other hand some are not. Here's some studies that show the benefits of nutrients like Glycine (just an amino acid, and v.cheap - bout ?10 here, $8 I'm guessing) on CsA / Prograf (Tacrolimus) related nephrotoxicity:

www.ncbi.nlm.nih.gov/pubmed/9197363 "CONCLUSION: Dietary glycine is a safe and effective treatment to reduce the nephrotoxicity of cyclosporine."

www.ncbi.nlm.nih.gov/pubmed/11212343 "Moreover, dietary glycine is protective in the kidney against cyclosporin A toxicity and ischemia-reperfusion injury."

And there are loads of others on Glycine. I remember Glycine having a really positive effect upon me when I first took it. I felt more social and I ate loads more (I've always been super skinny) - might help you actually NYA.

Don't let all the medical jargon in these studies scare you. You can tell what they mean usually by skimming them.

These days I take about five supplements each time I take Cyclosporin. I take Vitamin E, Glycine, Arginine, Essential Fats, Ginkgo Biloba and Green Tea Extract (which is just a high dose antioxidant). Doing a search on pubmed for any of these substances, like search for "Vitamin E Cyclosporin" will bring up loads of results showing it's beneficial effects:

www.ncbi.nlm.nih.gov/pubmed (if you come across some you don't understand, as you surely will, just skip to ones you can read)

Here's one for starters:

www.ncbi.nlm.nih.gov/pubmed/19523970?itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum&ordinalpos=3 Vitamin E protects against the mitochondrial damage caused by cyclosporin A in LLC-PK1 cells.

Anyway, these things have to be left up to the individual, but there is enough study data out there showing the really beneficial effects of nutritional supplements for people like us who have to take Cyclosporin / Prograf.

I should probably make this a post of it's own. I had planned to put together a book or blog of all this info at some point. It's shocking that almost no one on these drugs knows this stuff. With my conspiracy theory hat on, I would say that is because pharmaceutical companies (and hence doctors) would much rather have us on toxic drugs (which can make a profit) over beneficial nutrients (which can't make anywhere near as much money).

Anyway, my 2 cents.

I hope things improve for you NYA.