Depression post-tx

[UkrainianTracksuit]

It is important to state first that I have never been diagnosed with depression or any mental health issues. Consequently, I have never been prescribed any drugs for this issue.

Is depression after tx common? I see all these people excited and joyous over tx but I don't feel this way, at least right now.

Please know that I am aware these feelings are really selfish. I know there are people waiting a long time on the list and some people who cannot receive a transplant. There is a deep awareness that I received amazing gifts and do not take this for granted.

But, I cannot help but feel that these organs should have went to someone more worthy. Someone that has been waiting a longer time than me. Someone that has a lot of people that care and love them and want the best for them. Someone that really needed them for a good second chance.

I have been sick since birth but unless people knew, no one really could guess it. Being "incognito chronically ill" was only possible because I was exceptionally stubborn, did not really discuss it much and denied feeling bad when I knew I was. This was a double edged sword though because now I have these feelings. It is also a double edged sword because people don't think I need support or help.

The other thing that plays on my mind are relatives that know I was sick that ask what I am going to do with my life now. They misunderstand tx as a cure and not a treatment option. They openly say that I got a raw deal in life, had no life and now I am expected to go off and do something. I am not even recovered and have not come to terms with everything and they ask me "what I am going to do with my life" now?! Add on to the mental stress...

And then there is the stress I caused on my parents for all those years. This whole process has ruined whatever last nerve they had. At least on dialysis, I had a schedule and knew what to expect and in turn, though sad, they knew what to expect.

There is a social worker to talk to but I don't know if these feelings are common or something that needs addressing. Anyone else go through this?

[Simon Dog]

Post surgical depression is real, however, I do not know the % of xplantees that get it.

I believe I had it post hip transplant - anxiety, not sleeping more than 2 hours at a time, feelings of lack of purpose/hopelessness.  I realized this was a temporary feeling and, as if by magic, the fog lifted almost exactly 30 days post surgery and I started feeling great, sleeping well, etc.

[UkrainianTracksuit]

I'm one month post-op and it is at this point (the last week) that it has developed. It could be because I have more time to think about everything and I see people still waiting. Really bothers me...

Another point is that my recovery is slower than those who had just (I don't mean just to diminish but just as in single) a kidney tx. Not sure if that is contributing....

[Michael Murphy]

Just as ESRD  and Dialysys is a major traumatic life change so is life after transplant, there are many of these events but few as traumatic as these two.  You built up a support system to deal with dialysis now it’s gone.  The doctors, nurses, tech, social worke, and dietician became major players in your life now they are gone.  I believe this is common.  I would talk to a nurse on your transplant team or a social worker.  As far as feeling guilty about getting a kidney, you are at the end of a long chain of people all deciding wo gets the kidney.  Feeling guilty about winning the transplant lottery sounds like a normal event just try to remember the selection process picked you.  You don’t sound ungrateful or whiney, but just like someone dealing with a major life change.  Remember that some people like me are happy to see members of the Dialysys class graduate to a dialysis free life style.

[SooMK]

Depression after any life change is normal. I think it feels weird when you know you've received this great thing and you should be all happy-happy. It feels wrong not to be. You are only one month post transplant. You have barely begun to heal. You could have a lot of tinkering with your medications yet and don't forget that these are serious medications with side effects. I had days when I just didn't feel well, I had complications during the first year and that can make you feel down. I was surprised at how long I would still be having sharp pains near my incision. And the guilt! Hard to get past that. Definitely speak with your social worker. Give yourself time and set expectations for others too. Tell them you are working out your future plans. Think of yourself as a health education ambassador when you set people straight that transplants are not cures. I wish you well. Keep us up dated.

[MooseMom]

My dearest U-Track, it seems to me that you are spending an inordinate amount of time and energy worrying about what other people think, what you should say to other people, how you should be responsible for someone else's satisfaction, how other people might be more worthy of a transplant, etc.  Do you see a pattern here?  Let it be all about you for the time being.  You've earned it.

For every single transplant recipient, there will ALWAYS have been someone who has waited longer.

Believe it or not, there are plenty of people who are not interesting in being tranplanted (although perhaps the same can't be said for someone like yourself who needed both a kidney and pancreas).  They are happy with their treatment, with their lives, with their routine and don't want to face the devil they don't know.

Like I've said to you before, please have a little mercy on yourself.  You are not responsible for anyone but yourself, especially now.  You owe no one any explanations or apologies.  And you don't have to DO anything with your life except to just live it. 

[MooseMom]

Think of yourself as a health education ambassador when you set people straight that transplants are not cures. I wish you well. Keep us up dated.

YES!  If you are willing, you can do a good deal to forward education about transplantation, including the fact that they are not cures, just like SooMK said.  It is amazing how many people don't understand this.  Fight the Ignorance!!

[UkrainianTracksuit]

Believe it or not, there are plenty of people who are not interesting in being tranplanted (although perhaps the same can't be said for someone like yourself who needed both a kidney and pancreas).  They are happy with their treatment, with their lives, with their routine and don't want to face the devil they don't know.

I was one of those people and I said it here once or twice. It took a lot to convince me to go on dialysis from conservative care. And then, it took a lot of prodding to consider a transplant. Like all things, you hear a lot of the bad concerning the drugs and I was pretty scared. There is no question that the medications are serious and cause side effects but they have come a long way. My work up was easy and I was listed only for a handful of days. This is just so monumental that it hasn't really sunk in all the way.

Logically, I know that I have no say where I ended up on the list and why I was called so quickly. (Yes, there is a point system from dialysis start date, etc) It's just... well, I always thought there was someone out there that could use what I received and put it to better use. I know, I know... I need to stop looking around at other people and caring what they say. When I was looking for a live donor, I heard so many things such as they would prefer to give to a child (so they can have a life) or some one like a young mom or dad. How were they to know I didn't "mess up my own kidneys"? (I didn't....) Obviously, I doubt these people would become donors anyway and it doesn't matter now because of the selflessness of my deceased donor and their family, but I still hear these words in my mind.

I'm not a fan much of Dr. Phil but he once said that people can receive heaps of praise but that one insult sticks forever. This is one of those cases.

And now get the pity tissues... but.. it seems like there are people more loved than myself that are struggling and so many people want an amazing gift for them. Not that it matters in the grand scheme of things, because sympathy doesn't get you on the list, but I do feel guilty about that too.

It's difficult for me to make time "about myself" even in this time but I was always raised to look after other people first. Not like that will help me in the end but there are people who do not consider my surgery to be major or compare it to someone else. (X had a kidney and was out of hospital in 5 days, Y had a liver and you are doing better than them.) It is pretty fair to say my own support system is lacking so I have to internalize things.

Think of yourself as a health education ambassador when you set people straight that transplants are not cures.

I really like this idea as well and there are opportunities to do this. There is so much ignorance about organ donation that if we are able to teach others, it is a small victory.

As for my future and "life", I just want to tell people I want to be selfish for awhile. There are certain things I couldn't do on dialysis and now I want to focus on them. However, they want me to "adult" and do it asap. Haven't I adulted enough in this life? I don't think they had to learn about foot ulcers as a toddler... (never had one but for some reason, I was taught about them early!)

[MooseMom]

I always thought there was someone out there that could use what I received and put it to better use.

Depending upon how you define "better", you would well be right, and you could say the same about every recipient.  Maybe there is a budding genius out there who needs new organs but is still on a list somewhere.  Who knows?  But we all still have time ahead of us in which to put our new organs to "better" use.  Every day presents itself as an opportunity to make someone's life a bit better in ways we may not ever know.

I know, I know... I need to stop looking around at other people and caring what they say. When I was looking for a live donor, I heard so many things such as they would prefer to give to a child (so they can have a life) or some one like a young mom or dad. How were they to know I didn't "mess up my own kidneys"? (I didn't....) Obviously, I doubt these people would become donors anyway and it doesn't matter now because of the selflessness of my deceased donor and their family, but I still hear these words in my mind.

Then you are very lucky that none of these people became a live donor for you because it sounds to me like they'd consider you beholden to them for the rest of your life.  They would have made your life hell, and you would have been burdened with guilt for time immemorial.   

I'm not a fan much of Dr. Phil but he once said that people can receive heaps of praise but that one insult sticks forever. This is one of those cases.

My husband is much like this.  He gets accolades from everyone, but if he even suspects that just one person might not be quite so forthcoming with acclaim, he sulks and ponders.  Drives me nuts.  Talk about undermining your self and becoming your own worst enemy!  This is why many performers don't read reviews of their work!

And now get the pity tissues... but.. it seems like there are people more loved than myself that are struggling and so many people want an amazing gift for them. Not that it matters in the grand scheme of things, because sympathy doesn't get you on the list, but I do feel guilty about that too.

You're probably right about this, too.  The diabetic dad who has been on dialysis for yonks, the selfless mom who used to work two jobs to support her 5 kids but now can't because of dialysis, the grandma who has a large, extended family...all of these folks want an amazing gift for them.  These are the family members who go to social media (like Okarol did for her daughter, Jenna) to find a living donor, or who work together to find one friend or family member who might be willing to donate.  Not everyone is blessed with a large family or a large circle of friends.

I have a question for you about guilt.  You feel guilt for being transplanted while others are still waiting.  There will always be someone on the list.  Do any of your friends or family members feel guilty that you are the one who had to go through all of this while they're larking about, not having to endure transplantation and its aftermath?  Did anyone EVER tell you that they felt guilty for being healthy while you were so ill?  If so, how did they alleviate that guilt?

If you feel guilty, you can always do your bit to help "raise awareness".  I hate that phrase, but it works.  Most people have never had to even think about transplantation.  These people are not cruel nor stupid.  Luckily for them, the subject has never had to be considered.  But you can introduce the idea, and perhaps someone along the way will remember your story and will sign a donor card.

I have three friends living in three different countries that have signed a donor card because of my experience with transplantation, AND each of those three people have made their families aware of their intentions.

One St. Patrick's Days several years ago, my husband and I went to a local coffee house, the owner of which had put up one of those whiteboards.  Colored pens were provided, and customers were encouraged to write what in their lives made them feel lucky.  I wrote "I have a new kidney".  I didn't think anyone would take much notice as the shop was busy and loud.  But as I walked back to my seat, five people stopped me to congratulate me.  I did nothing to deserve "congratulations", but I hoped that one of those people would remember me and would decide to become a donor.

If we ever go into a BBQ place, or some place that has tables covered in paper where you can draw or doodle, I'll always write, "Donate Life".  I make sure that I do what I can to whittle down the waitlist.

It's difficult for me to make time "about myself" even in this time but I was always raised to look after other people first. Not like that will help me in the end but there are people who do not consider my surgery to be major or compare it to someone else. (X had a kidney and was out of hospital in 5 days, Y had a liver and you are doing better than them.) It is pretty fair to say my own support system is lacking so I have to internalize things.

Women are always taught that they come second because there is always someone else to look after.  We have to give ourselves a break sometimes and allow ourselves to realize that we can't take care of anyone else ALL OF THE DAMN TIME.  I am one of those people who was out of the hospital in FOUR days (I don't understand why no one gave me a medal for that!  LOL!), but so what?  That's entirely irrelevant, but I do understand it's annoying when people blather these types of comparisons.  It's human nature.  My husband had to have cataract surgery last year, and suddenly it seemed that EVERYONE HE EVER KNEW HAD CATARACT SURGERY OR KNEW SOMEONE WHO HAD CATARACT SURGERY AND IT ALL WENT PEAR-SHAPED.  I swear, I don't know what's wrong with people.  Maybe they think they're helping.  Well, you can't control the amount of silly drivel, but sure can ignore it!

As for my future and "life", I just want to tell people I want to be selfish for awhile. There are certain things I couldn't do on dialysis and now I want to focus on them. However, they want me to "adult" and do it asap. Haven't I adulted enough in this life? I don't think they had to learn about foot ulcers as a toddler... (never had one but for some reason, I was taught about them early!)

Yep, you tell them that.  If you really want them to quit annoying you with this question, this is what you do.  Bore them to tears.  Sit them down and tell them about all of the things you couldn't do on dialysis, and then tell them all the stuff you couldn't eat.  Blather on about phosphorus and potassium, about what happens to the body when there is too much of these minerals in your blood, and tell them which foods have too much phos and too much potassium.  I promise you that their eyes will glaze over.  And then wax lyrically about all of the food you now get to eat, all of the fluid you now get to drink.  You could even explain to them how people on dialysis can't pee!  You'd be amazed by how many people don't realize this is a side effect of renal failure.  They can't wrap their heads around the idea of not being able to pee!   I promise you, if you are creative and rabbit on, you will get no more questions about what you will do with your life.  You'll be eating and drinking and peeing!  Yay!

Then all will be well in your world.

[PrimeTimer]

Forgive me if I sound way off base here but in addition to depression, it almost sounds like you could be suffering from survivor's guilt syndrome. Or PTSD. There is help for that. Professionals can teach or give you "tools" to cope. I agree with MM, I believe she is spot on with everything. And now is definitely time to be "selfish" and take care of your new kidney by letting it bring life into yours. The life you were in pain to live and wait for, the life you worked for, the life you desperately wanted to experience -some normalcy. If it were me, I'd make a list of what I wanted to do just from day-to-day, a routine of sorts, normal little things to seek and enjoy and work my way up from there. Now that you are free from the dialysis chair, free up your mind! You need not anyone's permission to do that. Just believe that you can get yourself to "wherever you want to be in life". Doesn't happen overnite but sometimes the effort is half the adventure and where the sense of gain comes from. Go forward...to see yourself there...   

[MooseMom]

PrimeTimer, thank you so much for introducing the idea of survivor's guilt.  I was thinking about it just this afternoon and thought I'd mention it on this discussion thread.  I completely forgot, so thanks so much for mentioning it.

And I also agree that it would be a great idea to maybe make a list of what you want to do today instead of thinking about it long term.  PrimeTimer gives excellent advice on making a list of just normal things you want to do in a day.  I doubt you've had a ''normal day" in quite some time, and for you to experience this will be quite the accomplishment.












Sp mod Cas

[UkrainianTracksuit]

Prime Timer, I was told in passing in the hospital about survivor's guilt. It wasn't an in depth conversion but rather just mentioned randomly. So, you are probably on to something and correct.

If I could be brutally honest, the pancreas has been the bigger issue to overcome than being free from dialysis. Being free from dialysis is a huge deal and I am not minimizing it but I have anxiety over eating now. Since I was born, I received insulin and planned my day around it. My HBA1C was so well controlled that I felt I had more control over my diet (If I eat this, I will have X amount of insulin) and now I feel as though I panic over numbers like never before. Technically, I should be on high protein, high calcium and a more free diet, but I found myself reverting back to my renal/diabetic diet. In short, I feel a lack of control now than previously.

To answer your question, MooseMom, no, no one in my family felt guilty that they were healthy and I was not. They had pity or sympathy but the end result would be a) everyone has their own problems b) there are people worse off than you so get over it. By worse off, they did not consider other people with renal issues but rather those with rare diseases, cancers, cystic fibrosis, etc. c) Be happy that you have a process to extend your life. d) Kidney transplant is the most common form of transplantation; it's not a double lung tx! (Even with my own form of double, it wasn't a "life saving" operation.) My friends are too air-headed to even be guilty about anything. They are too busy taking Instagram shots of their butts and talking about their new designer bags. They don't even understand what a transplant entails and I gave up trying to educate them a long time ago. I would say I am talking about this because you never know what is in your future or even the future of your spouse, parents, siblings, children, etc but they just don't acknowledge that these things happen. Remember, positive vibes only...

Then there is the old adage that I am Russian, and therefore strong, and will be fine. Still, this week, I was asked about going back to work and my life plans. For some of the people that ask, I can't explain dialysis to them because they had relatives on it (relatives, who have since passed.)

I should explain that I do have a large family but many of them are older (too old to donate) and the younger ones live in Russia. My parents were assigned my advocates so I would not have to be told "no" to my face and they relied on word of mouth. This worked well for gifts and financial donations from overseas but that is much easier to do than donate an organ. My parents found social media to be akin to begging and that is beneath their pride. Further, they knew I didn't have a heart-wrenching story that would attract attention above the others seeking the same thing. They knew they couldn't "sell" my story since few people would consider donating to a young woman, without kids, already married and with a vanity problem. People would come to the conclusion I already had a life. It is like the Toronto Star story titled, "Organs for the rich and cute." For this reason, it will bother me that people that really struggle still wait with all the trying they do.

[PrimeTimer]

I can somewhat relate to the part of being expected to be strong. Because I was a champion athlete and also overcame many challenges in life, I always feel that I am expected to "stay strong" no matter what when the truth is, sometimes I'd like to be the weak one and have someone help me for a change instead of me helping people. Then I hear myself say that and feel guilty. I gather you are feeling that way, too. And I hate having to compare my life to others who have it harder. I get all that, I really do but gosh darn, it doesn't make my situation any easier. It's as people want us to compare our lives to others and to forget or deny ourselves our own feelings. Well, the heck with that. I learned a long time ago that it's not healthy to deny yourself your own thoughts and feelings. Doesn't mean you are right or wrong but that you have YOUR OWN thoughts and feelings. Let them be known, don't bottle them up, let someone know, just like how you are telling us here. Liberate yourself so that you can move forward to the next stage and whatever that is. Won't find out if you keep the door locked and not free yourself from emotions, thoughts and ideas that need explored. Look at your own self worth. I think that is part of having self-respect. Grieve for the life you had gotten use to and grieve for your donors and their sacrifices but once you've gone thru the process, open your heart and mind to the wonders that may lay ahead -a big beautiful world out there with you in it! I was once told that if I didn't know what to do then to wait because sooner or later the answer to that question would come to me and I would know when it had. Don't allow people to pull you in all different directions. Just keep doing what you like to do and tomorrow you might want to try something more. Let it come to you (and tell everyone else to buzz off). Just got to get thru this recovery phase, my gosh you've just been thru major surgery that involves a major life change, don't be so hard on yourself, ride this bike slowly, baby!

[Blake nighsonger]

Hi PT,!  So ellusive when in the throngs of,,, , for me, recovering from tX..  cyristal clear on this process , that's a real upper!!!  thanks