I want to donate to my father who is a ESRD patient, not yet on dialysis. He is averse to this unable to bear the idea of accepting a kidney from his own daughter. If any of you have been in this situation and have successfully managed to effect a change in mind of your parent, please help me out here.
Other than myself, there is no other living donor available for my father. He is of O(+) blood group and may end up waiting for years for a deceased donor kidney, here, in India.
Inspite of the confidence given by nephrologists that there will be no significant risk to me, my father remains unyielding. As his only child, I feel helpless and yet unwilling to accept his decision as correct.
If there's anyone who has been through child to parent donation, please share your experience with me.
Also, if you feel my father is right to refuse a transplant with me as donor..hard as it is for me to accept that can happen..please tell me so.
Thank you !
Written by
LilyInMay
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Hello LilyInMay! I was in the same situation (except I do have a sister)!!!
13 years ago my Dad was told to start looking into options for dialysis (hosiptal, dialysis center or at home). We also looked into seeing if he could get on the Transplant List. After a few months of research, doctor's appointments, meetings, etc.... my Dad was accepted for a transplant list. I started going through the testing all the time my Dad was against the situation. Our Social Worker didn't want to "push" the issue with my Dad until I was completely cleared to donate (otherwise, there was no point in trying to persuade him).
As I was just about to complete my testing, my sister had a "casual" conversation with our Dad along the lines of if his parents were alive and one of them needed a kidney, .... he immediately said he would donate... and then realized the reality of what he just said. He then knew I was doing EXACTLY as he would do for his parent!!!
I then had a conversation with my Dad and asked if he was 51% ok with my donation and I understood he'd NEVER be 100% OK with it as he is my parent.... he said yes, and that was the end of the conversation!
So, 12 1/2 years ago, Feb 12, 2007, we had our surgeries, and have never looked back! My Dad just celebrated his 83rd birthday 2 days ago, and I AM 100% FINE - IF NOT BETTER THAN PRIOR TO MY DONATION!! There are articles "out there" somewhere that prove that kidney donors live on average, 30 days longer than non-donors! We are VERY HEALTHY to begin with and continue to care for ourselves after kidney donation.
I can only hope this helps you to convince your Dad to allow you to give the gift of life!
My email is dskdonor@gmail.com if you wish to contact me directly, and my name is Debi
Thanks a lot Debi for sharing your story. Its a big boost to know happy endings do happen in real life !
My father is not yet willing to open his mind to accomodate this..I've decided to not push him much, we see his energy levels dip and his BP slowly go high day by day, so don't want to add to the stress.
He is very hopeful that in 2-3 years time, science would have advanced to allow us to use a implantable/bionic kidney. I can only pray that it will indeed be so..
That said, he is aware that I'm always available to donate, my decision is unchanged. I hope that in time, he will choose to go ahead with the transplant.
Thanks again for writing, it really made me happy hearing your donor story. Wishing you and your father many years of great health and good times ahead !
PLEASE keep trying to change your Dad's mind!!!! Do not give up! My Dad has NOT looked back at all and I am really very healthy!! REALLY! and... just so you know, at least here in the USA, if you donate a kidney and for some reason ending up needing one, you go STRAIGHT TO THE TOP OF THE LIST.... it will then only be days until you receive one yourself. Perhaps that will help your Dad decide in your (both your) favor??!?!!! Best of luck to you both!
Thanks a lot Debi, for your positivity and encouragement. I'll find out if we have a similar rule in place, thats an excellent motivator and assurance for anyone who is sitting on the fence about organ donation.
I'll keep bringing up the topic regularly so that my father can reconsider..as often as it takes to decide on it..it was wonderful to hear from you, really...here in India, our culture is a bit different, parents taking any help from children, specially their daughters is quite uncommon..so you can imagine organ donation this way requires a huge cultural and behavioral jump.
This much I have understood clearly though, my father must want to make the choice as much as I want him to. Towards that goal, I will continue to work. I will keep posting any and developments here.
I work with MANY MANY people from India (I'm in technology).... and what I've learned is that as different as we are, we are the same! The Jewish family isn't much different that what you described -- parents in general do not take ANYTHING from their children, no matter how old they are (not even paying for a coffee!)! This was a HUGE challenge for us, as it is I know for you.
Please DO NOT GIVE UP - Keep bringing it up. Perhaps go through all your testing to see if you are a match and can donate. Once that's all done and you CAN DONATE -- have a social worker "work" on your Dad in addition to yourself! I bet he would want to donate to a parent if he could!!!
It's nice to know you can clearly understand my situation and YET are positive of a favourable outcome. My mom says that though my dad is outwardly opposing the transplant, he is not entirely throwing it out of the window, so to speak..
Did your mom support your decision right from the start, Debi?
So here's what I plan to do- I got the initial bloodwork done with basic tests and the cross match which is all good. I'm going to go ahead with Step 2 tests (there are a total of 5 steps) and as you said completely be sure I'm eligible to donate..
Next, I'll download the HealthUnlocked App on my father's phone and get him to go over the posts under Transplant and Donation..
I will check with out nephrologist if there is any counselling available here for transplant.. The social worker concept is not available and though we've been counselled by the nephrologist on the pros of transplant, sadly, I have always got the feeling my father did not want to be part of that conversation..with me as donor.
Think it's time to introduce myself properly 🙂 I'm Jayanthi, 38, mother to Anjana and Mahima, married to Anand. I've mailed a family photo to the id you shared previously. It feels great that someone across the globe can guide and encourage me so.
Pain? Absolutely NONE -- do not even know I'm down a kidney... you live a perfectly normal life with only 1 kidney! Unlike other organs you don't "Need", they're only one of them so your body probably does something to deal with the missing organ... but you have 2 kidneys and only NEED one!
How would you feel if he died? If he weren't there with his experience, love, wisdom to guide you and the children you will have? How will you feel knowing you could have him and he refused? Are these answers appropriate to share with him? I like the answer below wherein the daughter asked her father if he would donate to his parents and how that helped further her father's understanding and so, acceptance.
Hi, thanks for responding. One of the very first things I did was write a long letter to my dad stating all the reasons I thought he should seriously consider putting aside his reservations about renal transplant.
One of the things he pins a lot of hope on is the wearable artificial kidney..he feels if he can just keep going for a couple of years, the bionic kidney would be available for use and then there would be no need to put me through surgery.
Yes, isn't it just great that Debi's father could see things from her perspective..sometimes we are so stressed we completely fail to realize another person's perspective..I'm praying for my father to have a change of heart...soon.
Thanks for your support, I too feel donors do not hesitate once their mind is made up. The recipient is the one who feels the partial additional responsibility of putting the donor through surgery. And my father perhaps is finding it difficult to shoulder this responsibility.
Wishing you good health and best wishes to both your donors ! Good day !
Dear Lily-The decision to donate is very personal. You can always donate to another and your father can accept a kidney from another person. You can then show him you are healthy post op and maybe this can change his mind. You are very brave and your father is just protecting you. I donated to a friend in 2012 and would do it again in a heartbeat. I have been fine since.
Thank you for your positive message. Here in India, the law only permits donation to close related family members. It’s quite a restrictive rule for both donors and recipients alike.
Happy to hear you are doing great post donation, wishing you and your friend good health and good times always !
My mother did not want me to give her my kidney, either. She said she had a great life, there were other options, and she would not see me be put through pain to ease hers. I told her to just get on the list for a deceased kidney. When she had the first information class on the transplant process to be officially added to the list, I joined her. I gave her a choice after the class. Either she would agree to me donating a kidney to her, or I would donate altruistically in her honor. I asked her who in the class did she think we should save? I wanted extra time with my mom for my son and nephew to get to know such a wonderful person. How could I watch her go through what she was experiencing knowing I could help. It was going to be torture. Anyway, it worked! If I was dead set on giving a kidney to someone, she agreed that she should be the one.
We had our surgery on January 2, 2020! We are both recovering. The process is not easy, but I am so happy we did it!
My mom couldn't imagine hurting me, but it just took some convincing for her to see that her refusing my help was hurting more than a surgery ever would.
This is so great to hear! I am in the process of final evaluation for paired kidney donation for a very good friend. Hopefully we will both match over the summer and have surgeries in the fall.
It is great that you are in the final evaluation. I hope you are approved and move forward to scheduling the surgery soon. No matter what, follow your heart. As a donor, you may have to push, wait or may just not be able to donate. No matter what, stay positive!
I am in the process of paired kidney donation for a friend. My friend has a son and a daughter who have not yet been tested, and I am ok with that.
Her daughter is 27 and has not yet had children, so my friend will not even let her consider donating now, due to possible risks in a future pregnancy.
Her son is in the military and will have to be on desk duty if he donates, so my friend will not let him be tested yet. He has 4 more years to his military commitment. If she has not gotten a kidney by year 3, he will begin the testing process.
So. I guess what i am saying is, your Dad has his reasons, even if you do not agree with them. I think you should continue to bring it up to him, and hopefully he will see this as your way!
Great to read your note, the world is a better place with big hearted people like you !
Sorry I took quite a while to reply.
I can fully appreciate my father's point of view. It took me some time to see it from his perspective, perhaps he too may come around to finally seeing things from my standpoint.
He is now doing PD at home, been 4 months since we started.
Wish you and your partners in the paired donation best of luck in the transplant process, a smooth procedure, quick recovery and many, many years of good health !!
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