I received a kidney transplant about a year ago. I was donated a live one.
However, I was very uncertain about transplant, and feel like I was pushed into having one due to other people’s insistence, amongst other things. As such, I am very resentful and angry.
additionally, everyone treats my donor like they are wonderful for donating, and people tell me I should be grateful. I lived through years of chronic kidney disease, which kept me at home doing nothing, for years. I am not grateful, and I should not have to be in my opinion. I hate it when people say anything like that.
I do not experience any physical symptoms, I am perfectly healthy other than a transplant.
I guess I’m looking for anyone else who feels like this, who is fed up of being told that their life is wonderful, or that they should be grateful for being able to experience a normal life.
I am not interested in counselling. I highly suspect any counsellor would say that my donor was a wonderful human being. I’m not interested.
Uhhhm thanks everyone. I seriously did not think this post would get as much attention as it has. But thanks to everyone who has empathised/been supportive, and thanks to people who signposted me towards a helpline. I will phone it soon. <3
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hello, I’m sorry to hear you are so upset. Not meeting others expectations of gratitude but feeling anger can’t be easy. Chronic illness can be a very lonely place . Do you feel resentment about being an unwell person amongst a group of health family and friends?
It sounds like you feel you haven’t been listened to and particularly hard if you feel you didn’t need the transplant.
Rather than counselling which you said would refuse perhaps you should go back to your team and understand why you were given it. If it were preemptive slowly try to understand what you were being saved from suffering .
I do feel very lonely. My family all expect me to be grateful too. I missed out on my first go at uni due to all this…..being told how I should feel and people wanting to hear about this wonderful story whenever I bring up my transplant…is exhausting. Even if I’d’ve wanted it, it was a long battle with my consultant, whom I really didn’t get on with, with large stretches of time debating palliative care inbetween, due to other problems affecting transplant.
that’s very tough. I know how you feel. You can’t tell them you feel exasperated and angry etc. They just want gratitude but can’t possibly understand you?
The drugs won’t be helping . Are you on a Prednisolone ? That can make moods elevated.
Take your time. Feelings come and go. Feelings of anger pass if examined .
My entire family are well. No one offered to donate and I did feel abandoned , briefly , but it passed.
Just keep going, acknowledging to yourself and observing how you feel with out judgement without the need to explain to others or expecting help.
I was on dialysis, but was debating between palliative care and a transplant.
I was slightly less resentful about dialysis because the nurses were very very good at dealing with my emotions, and also occasionally telling my parents to go away.
I debated the same. I didn’t want my sisters kidney. It made me so uncomfortable and she did the testing without me knowing. I did home dialysis and kidney transplant because I was making my husband and Mom happy. I didn’t have much time to think about it after my sister was a perfect match. I still sit home and now I’m healing from surgery. I have no idea what I’m going to do with my “new life”
feeling pushed into something so significant must make you feel less in control. Have you considered the quality of life you had under dialysis but also the quality of life others had because you were on dialysis. Maybe your parents had to worry more, manage hospital stays, manage ensuring dialysis is happening. There is probably guilt over you missing out on your life. It is ultimately your choice of course. Seeing the perspective from the other side helps with understanding even if it doesn’t change the event, it brings some element of acceptance over time. Now that you are more healthy, perhaps finding a way to move, start afresh with a new doctor will also help as it sounds like you weren’t feeling heard.
Anger comes from loss of control. Having a chronic disease at any age can bring on anger. It's almost the same pattern of emotions you go through when you are dying. During that process no one does or should question your emotions. Your emotions are your own. After a transplant due to medication and the process, your emotions can be very volatile. Mine were and I was 70 at the time. I should have been more emotionally secure, but I was emotionally out of control on the inside but on the outside functional. You should be able to share your anger in a safe space and realize it is ok. I have been there and there are times when I return. There is a reason that Acceptance is the last step. It is the hardest and I may never get there. Take care and thanks for sharing.
when I first got the transplant the first week's prednisone was 800 mg, that made me very emotional and said things that hurting people that I regularly wouldn't say.
Hopefully you have forgiven yourself. Temporary mental illness due to medication is just as overpowering as chronic. Both are affiliated with chemical embalance and treatable. Having a relative experiencing the chronic type helped me through all the chemical changes during and after my transplant. Some were emotional due to the stress but some were a reaction to the medication. Growing up in a time where mental illness was not discussed I now understand what others experience from depression to anger and back again. Take care and know others are thinking of you and ready to listen but not judge.
oh I understand completely! This happened with my first kidney transplant! I’ve had 2 btw. My first was from my sister.. and she acted like she was my savior. Even went as far to say “she’s the reason I have my son.” She basked in the spotlight and I resented her because she didn’t want to initially donate. My parents basically forced her. She became very very toxic towards me. It eventually led to my body rejecting her kidney. It (transplant) wasn’t given to me w love , it was given to me w animosity, which led to failure. I still have a terrible relationship w my sister & she’s become even more toxic and dangerous to me.. knowingly… I received my second kidney transplant from a deceased donor & I’ve been thriving ever since. When something isn’t given with love it won’t prosper.. I truly hope this “helped “ in some kind of way & I’m sending you healing energy & soft hugs love ❤️
thanks. Mine was given to me by my dad, and he was semi-forced into it. Idk if it’ll end up dead as a result. I’m sending my crystal ball back as faulty
But there was a lot of tension as my mum wanted me to have it but my dad was less than thrilled. That didn’t help things. My mum was also my carer for other reasons at the time. It was honestly a mess at times. Sometimes my consultant listened to my mum rather than me, then I refused to go along with things…such a waste of time. Lots of people complained at other people about my kidney transplant, in the medical community locally. It was complicated.
Thank you for sharing. I was having a hard time understanding the initial post until you added your own experience, detailing and expanding the picture. It really hadn't occurred to me that some donors unwillingly donate and others use the donation against the recipient. I thought that those factors would be carefully evaluated; it looks like they aren't at some places. While both your situations are heartbreaking, your voices are very educational. I hope both of you share this in the kidney community at large in some way. Your stories endorses our choice to seek a deceased donor kidney for my hubby a couple of years ago. The pressure was intense for our adult children to donate. I saw issues with their health at the time, but I could also tell they were unwilling. Seeing their dad go downhill also pointed out to them the value of keeping two kidneys. So we said instinctively said "no". Thankfully, my hubby received a deceased donor kidney with some issues later on; it wasn't in pristine shape but it's working well. I'm so sorry both of you have seen the other side of what should have been a wonderful journey.
thank you for not pressuring your kids to donate. I honestly would not really recommend it based on my admittedly apparently uncommon experience. I think it can create very weird dynamics, especially if the healthy partners would be semi-looking after/emotionally involved with both of the operated people at the same time, and they give more time/attention to one person than the other. I don’t mean to insinuate that anyone here is usually jealous/unstable mentally, but if you’re in pain after a weeklong stay at the hospital, with everyone anxious about complications…I think all bets are off. It can feel like a lot for the healthy/non-operated people to deal with too.
I am very sorry to hear about what you are going through. I just wanted to let you know that you may not be alone and we offer additional support services that may further help you.
Our PEERS Program is a peer mentoring program, where individuals are connected via phone with trained mentors who have been there themselves.
Our NKF Cares Team is another great option for support. The Patient Information Help Line, offers support for people affected by kidney disease. It's designed just for patients, family members and care partners. If you'd like to speak with one of our trained specialists, please call: 1-855-653-2273.
To learn more about all of our support services, visit us at: kidney.org/treatment-support
Some of our services, such as PEERS, is not available to international participants. However, the UK kidney organizations offer similar support services and resources. For more information, visit: kidney.org.uk/ and kidneycareuk.org/.
I have a hard time understanding your post. I have a hard believing that you would choose death at 22 years old. Life is pretty special to me!! I had my transplant in 1999 from a 16 year old deceased donor. I am very grateful!! I was 49 and a lot yet to do. I was able to have a full career in Gerontology. I saw my daughters' marry, have a relationship with my grandchildren, and have traveled with my husband to Europe, Canada, Caribbean and have visited the National Parks in the USA. I am a public speaker and volunteer with the Donor Alliance of WY/CO. I am also a Kidney Advocate with the National Kidney Foundation. With my WY State Representative we were able to pass the Living Donor Protection Act into law in Wyoming. I have had a very rich and full life. I am now 73 and am certainly not done with my life.
You need to find something to do with your life. Something that is satisfying. Go to college or trade school - start a career!
sorry you are going through such a hard time with your transplant . Sound like your emotion are high and you want people to respect your voice on the subject . I’m hoping you can find some peace .
In one of your replies you wrote about your medical situation during dialysis "I was on dialysis, but was debating between palliative care and a transplant." This sounds like you were going to die unless you got a transplant. Is that right?
no, but I didn’t want to do dialysis indefinitely. I am severely needle phobic due to a childhood incident, to the point that I had a dialysis line for a year. Apparently that’s pretty unusual. Nowadays I’m a little better. My renal unit have fully accepted that I don’t have phlebotomy appointments though. I just wander in on a less anxious day and they sort it out. It’s not ideal, but given the situation and that there’s thankfully only one of me….They cope with it.
I don’t understand this at all. If you didn’t want the kidney you shouldn’t have taken it. You’re responsible for your own choices. Do you know how many people would kill to be in your shoes?
Sarcasm won't get you anywhere with this group!! As sick I was, I would have sold my soul to the devil, for a kidney. OK, not really = but I choose life.
Sorry that you may not have control in your life. I'm assuming that since you had a major medical problem so early in your life, you never had the opportunity to take control of what was happening. But, now its time. Tell your family to stop worrying so much and let you make your decisions. If you're feeling fine, think about what you want to do in your life and start doing it. Good luck and keep us posted.
Because it is unethical to accept an organ when it puts the donor in (significant) risk of death. While retransplantation technology is available, it has been used rarely and only with organs from deceased donors.
It is more unethical to give someone a transplant that they did not want...Transplant is not for everyone, she clearly said she was happy with Dialysis...I am in the same boat...She may have later decided on her own to recieve a transplant...but it should have been her decision
We can all have opinions about this but you are unlikely to find any qualified surgeon to do it, as medical ethics are clearly established. Why do you think the living donor procedure is so rigorous?
They should have been a little more rigorous with her and understood that she did not want to do Transplant...She is upset and I don't blame her, I would be too
One of my transplant consultants did kinda try and delay transplant, but I think in the end he couldn’t really think of a legitimate reason. I really hated being stuck at home feeling like everyone expected me to have it and feeling so helpless and unable to do much due to dialysis taking up so much time….so I did it. I had the transplant.
In a way in my opinion that was the doctors fault in pushing so hard for transplant to be the desired outcome from the beginning.
Though my failure to say no, or go to uni on dialysis is my own fault. But when everyone from parents to doctors seem to expect it will happen…eventually it does, and it becomes hard to know what you, yourself want. I think in the end, I just wanted to get away from the pressure, so I pushed for the transplant myself. Honestly, I feel guilty too. I feel guilty taking a kidney from someone who probably really wanted it. But with all the pressure and expectation…
if I’m honest, a better outcome would’ve been for me to go to uni on dialysis in my opinion. I had no side effects, I was neurotically good at keeping my line clean. I managed it for a year, doing all my own showers and living pretty independently. But I knew the pressure or expectations to have a transplant even from the doctors would never really go away….
So sure. Anyone can blame me, and I’m not directing this at anyone in particular. But such are the downsides of assuming that any operation is a cure all for any condition. And no, in case anyone is wondering, I never did seriously look at palliative care. I didn’t want to die. I wanted to live free from pressure or expectations to have an operation I didn’t want.
I understand what you are saying...I am also on Dialysis, except I do my own at home ...I do nighttime PD and am very comfortable with it and have been for 3 years...and as long as I do well I am not looking to do Transplant...My Clinic asks me each month if I have changed my mind , but as of now I just havent...Like you said Transplant doesnt solve it...just changes the problems...that I don't have now and fear it may be worse...plus all the waiting for the call would keep me on pins and needles instead of just living my life...they don't push too much on it...for one thing I am 65 and for another I do very well and work hard to keep it a good alternative fir myself...But if I do change my mind I want it to be my decision...its such a deep personal thing and nobody could or should decide that fir anyone else...Continue to enjoy your life and I will pray that you will find a purpose that helps your heart heal...
Hello, as the mom and caregiver of a 23 year old kidney transplant recipient and donor too , I want to share that it is a very emotional and rough experience for the recipient, donor family and all close to them. From your post I understand you are feeling physically good. Please consider going back to university and doing all the things you want to do in life. Anger and guilt take away positive energy. These feelings will pass and turn into positive energy for you as you put all this to past and enjoy all that life brings forth. My children grew closer to eachother after transplant and I thank God for it. My daughter lost two years of university as she couldn’t handle the rigors of university while on transplant. She is going back to school next month and we are so happy for her. Her longing to go back to school helped my daughter through the past two years. She was depressed and would tell me on several occasions that she did not do anything wrong to get kidney disease. From a parent’s perspective it was so hard for me and my husband. We were on an emotional roller coaster and praying with all our hearts that our children and family survive and thrive through all this It might have been the same for your parents. I am writing all this hoping that it helps you find peace within yourself. Sometimes deciding to forgive both yourself and others and accept the present as it is can make all the difference in relationships. I wish you well.
My 45 y.o. son was on peritoneal dialysis for over a year. Over a year ago I donated my kidney in a 6 person swap. In about a 15 hr period 3 people got new living donor kidneys and 3 people donated theirs- me included. A live kidney is better than a deceased kidney. My son is very happy off dialysis and I don't miss my kidney. Each person is responsible to maintain his health ,be of service to others, and to be grateful to his/her higher power for being alive one day at a time. This isa full time job that each person has.
From your reply to LibraEmpath, I am sorry for all the family drama that were tied to your life-saving transplant story. It sounds like your anger is not "really" about a transplant but about the emotional burden the party involved put on you. I know it is tough and it makes you blame the transplant itself.
However, it is actually easier to solve. The transplant or any treatments given to you is not relevant. We all have family drama and we all have relationship struggles in our lives. Family therapist sounds like a good option for all of you to explore (not just you) together.
In the meantime, try to forgive those words that came across as offensive to you from your family members. They are humans just like us and we all make mistakes without realizing it. Their intention is out of love. I hope for that alone you can forgive and forget, and focus on starting a new life of independence and gratefulness.
You are too sweet! I hope to be helpful to others and do empathize with their struggles. The treatment and medical problems we each deal with may be different but the physical and psychological burdens from them are equally heavy. I hope we all can support one another with compassion and objectivity
Thank you for your post. I received a kidney three years ago (right before covid) and have a very tough time physically the last couple of years. Your feelings are real. I have felt happy, sad, guilty, useless, angry and also grateful. Having grown up with my mom on Dialyses I knew I did NOT want to go on dialyses. After three years I am just beginning to feel normal and don’t think about my transplant that much. I mean it. I really don’t. I hope you can get to the point where you just live your life. It is completely amazing and strange and weird that we get to live after kidney failure. Of course we are going to wonder if it was worth it. I wish you the very best and I honor all of your feelings.
Reading about your situation and all the responses has made me feel so much less alone. I too have had similar feelings. I have bipolar disorder, and as a result of taking Lithium for 15 years, I developed kidney disease. It did take about 20 years after discovering the medication damaged my kidneys to get to the point where my nephrologist recommended transplant surgery. That was in March, 2022. Since that time, I started a journey of weight loss and exercise, which raised my eGFR from 18 to 27. I was thrilled and was told my transplant was not needed and could be delayed for years. Since then, my eGFR has decreased, and I’ve been feeling exhausted. I’m unable to get out and be as active as I was just a couple of months ago. I’m very concerned and worried about how a transplant will affect my relative stability with bipolar disorder. My husband is a match, and I experienced the same feelings as you did. I simply didn’t feel excited or grateful enough for my extremely fortunate situation. This made me feel guilty but also angry since I was expected to jump for joy and be so happy since I have a live donor. My husband never put any pressure on me and didn’t expect me to act like he was my personal hero. My family was also supportive but did not treat me with any animosity or expectations. It was actually the people I reached out to for support who told me how happy I should be and that I should be so grateful. But, no one understood my feelings or supported me when I wasn’t acting incredibly over-the-top grateful for my “miraculous” situation. That made me feel so much worse! I still wonder why we cannot have our own journey respected, however we feel about our predicament. I’m 60 and still terrified and not thrilled at all about a transplant. I’m certain I’ll get it when necessary, but it doesn’t seem like the cure-all some people view it as. I’m very worried about the medications and how they might adversely affect my overall health. So, I totally understand your feelings of anger and hope your post has enlightened those with rose-colored glasses about the entire experience! Thank you for posting and making me feel less alone! All of our feelings are valid and should be respected. Any responses will be appreciated.
I too have bipolar disease, took lithium and it destroyed my kidneys. I was very worried about having to take steroids and becoming manic post surgery . I see my psychiatrist every week and he said I should not be too concerned because I am already on psych meds and he can easily increase them if mania appears, and he is monitoring me closely. The steroids they used on me for transplant was not a gigantic dose, and they tapered them down sort of quickly. Every time we’d drop ( like from 20 mg to 15 mg) I would get a bit moody feeling, but it passed. I encourage you to speak to your psychiatrist about your concerns.
I also understand your fear of the transplant meds and they are not fun. At all. They all increase your risk of some cancers.
Transplant is just treatment, not a cure. There are some patients who regret getting it, for various reasons. But having freedom from going to dialysis, is life changing.
But when your GFR drops and you are tired all the time, basically because your body is filled with toxins, you need a transplant or dialysis. My doctor made me wait until GFR 6 and I could barely move, I felt half dead. It was the right thing to do, and I resent him making me wait that lonely. I did in-center hemo, and I was exhausted by that process as are many people. But on non-dialysis days, I felt better than before started. Of course, some people say peritoneal dialysis is much less exhausting then in-center hemo, but it’s not what I wanted.
If you do ever go on dialysis, you will see how hellish it truly is, though everyone normalizes it, and realize why many (not all) dialysis patiets are desperate for transplants.
My family watched me suffer terribly on dialysis, to the point where my brother and his wife were actively avoiding me because all I wanted to talk about was how horrible it was. I had foot cramps and low blood pressure, some days felt rotten. They were so excited when I called to tell them I got a deceased donor kidney and was on the way to the airport.
I think most people just don’t understand what it’s like walking around knowing that you are in organ failure, I certainly felt like I was kind of doomed. It’s lonely having a chronic illness. That’s really a shame that people expected you to feel over the top grateful. Because I imagine ( though I can’t say for sure) you were probably just thinking, I don’t want a transplant, I just want my kidneys to work!
Wanting a transplant, let me tell you, is a horrible feeling. I asked all of my siblings of course. My sister started the testing, but she felt the transplant center only wanted the kidney and didn’t care about what happened to her, she went to her own doctor who said he recommended she not having it, so she quit. We were the same blood type, B+. My transplant center had a program for closely matched siblings where you ended up needing no immune suppression at all. I carry a lot of anger toward her for not donating, not even finishing the process. I would think the transplant center has a lot more experience than her doctor when it comes to post-transplant donors, and I wish she had listened to what they had to say. It really tortures me sometimes. I was shocked that none of my cousins stepped up, one of them said he thought about it but it would take too much time and he was busy, and my best friend for 40 years turned me down.
I asked my older brother and he said no, he wanted to keep his spare kidney in case one of his kids ever needed it. I understand, but it still hurts. I asked my younger brother and he said he takes a lot of medication so no. I am deeply angry at him and I don’t know if I can ever forgive him.
One of my college friends stepped forward to be tested (known each other 33 years). He was rejected due to low kidney function. He was 59. He thought he was so healthy.
I appealed to my mom’s church and a total stranger stepped forward to donate - in honor of her 60th birthday. That should have been a clue she didn’t have enough function. She wanted to meet me and it felt so weird. And why did she care?
I put an ad in a journal and another stranger came forward, saying she wanted to help me. I told her great, yes, but I don’t want to meet you ahead of time. She was 44 and her GFR was 87 last year. My center told my college friend that 85 was a hard line for them, you could not be below that. So, she was questionable.
Another friend was interested but she was 49, had just taken on a second job, and had a seven year old daughter. She was blown away when I told her how much testing was required. She was overdue for a mammogram, physical, etc. She said she’d just have to find the time to make appointments. I told her, Thank you, but no. It’s just not likely she’d be accepted and I really can’t imagine she’d really want to donate, her family really needs her and she just took on that second job.
The reason I told you all that is because maybe that helps you see why people are telling you it’s sooooo amazing that you have a willing living donor. Because the process of trying to find one, is exhausting. Getting your hopes up, having the donor fail. Emailing every single person on your contact list - three times - begging them for a kidney. I started resenting everyone.
When I got the call that I was matched with a deceased donor, I called one of my friends and he said, Are you sure you don’t want to wait for a living donor. I said absolutely not. Not after trying and failing for a year to find one.
Everyone’s journey is totally, totally unique and should be respected. I was talking to someone at my dialysis center and he said his daughter wanted to give him her kidney but he wouldn’t take it out of fear of health consequence for her. At first I was flabbergasted but, you know, people decide what they want. Pressuring them is wrong.
I cannot thank you enough for your reply and transparency! It helps me beyond belief to hear your situation (though I’m terribly sorry for all you went through and still may be experiencing. I I now know I feel much different than I did a year ago. I am truly grateful I have a live donor — my husband is so selfless and didn’t ever have to make a choice. He’d do anything in the world to help me. I KNOW I am one of the lucky ones who doesn’t have to wait with bated breath for that call, knowing it could be anytime and could take a year or five years or forever. I cannot understand that struggle and I hope I never will. I’m still scared about all of the possibilities and options. Once my husband started testing, my sister said she would as well. But, at 66, I told her she was too old to be my donor. When I learned otherwise, that she could be up to 70 years old, she avoided the conversation at every turn. I know you went through this exponentially, but I have a kernel of experience with it, and it’s still difficult knowing she’d never step up. My son immediately offered and although he was sincere, I told him no. He’s just 26, but he’s also transgender and would need to get off of testosterone. I cannot see ever putting him in that situation.
It’s difficult for everyone involved, and of course I’ve had many pity parties. I had a very early stage of breast cancer 14 years ago, and through a double mastectomy, a hysterectomy, and many other surgeries, I held my cool and persevered. It did not compare at all to the physical and mental struggles I’ve endured so far with chronic kidney disease. I hold on to hope that we will all do the very best we can with what is thrown our way. I’d like to stay healthy of course, but more than anything, I strive to be balanced, thankful and happy. I’m on my way….
Its not our place to address your feelings, but we have also felt resentment and anger, just maybe for different reasons. For me, its annoying that every relative of mine called me, and told me that they sure I have nothing wrong with me. Despite the fact that numbers were clear, they were very sure I was okay, and they were praying for that.
Why would anyone feel angry, just because own relatives called for sympathy? Well, it was idiotic, and for me it was a bit disrespectful. Clearly I needed time to adapt everything, and saying someone very false hopes is not helping, its actually toxic.
So it totally depends on which angle you are looking at the same situation.
Sometimes parents are super pushy, or overly worried about you - my mom thought that I would never be able to swim because of my kidney disease, can you believe that?- sad news is that its never gonna change. I think your feelings will change over time. If and when you can have a distance, and a life to yourself, I think you will feel less and less about these. Dont get me wrong, our loved ones are not necessarily treating us the right way all the time, they also make mistakes, sometimes dont see you, dont listen you, but focus on how they perceive your situation. And it doesnt always mean they are right to do whatever they are doing. But it will go away by time. You may think dialysis was better because you were feeling better with nurses, but now you can actually start on with your life.
I understand the feeling. Hearing my mum tell my relatives I was having a kidney transplant and that I was fine was infuriating. I know she did it because it was easier, and it was better even in my opinion than telling them the behind the scenes drama, but in my opinion, relatives should not ask or express any opinion about someone else’s health. I am sorry you went through that.
I am amazed regarding everything you sustained during the transplant process and admire your strength and bravery. I’m sincerely sorry you went through all you did, but I’m also very impressed with your maturity and ability to express your feelings authentically. Thank you for sharing your story — we can all gain valuable insight from your experiences!
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