Mental health post transplant.

[Rmatthew]

Hi again, I’m almost 5 months post transplant and for the last while I’ve been thinking constantly about the person who unfortunately passed away and I got one of their kidneys, and I can’t shake the guilt I’ve been feeling over it, to the point it’s kept me up all night countless times. I’m not sure how to balance out the appreciation of receiving a new chance at life and the guilt aswell. Did anyone else have this sort of battle mentally?

[Hidden]

Hey Rmatthew I had a transplant when I was ten and even at that age I remember feeling the same way to a degree but remember that most donors deceased or not chose to donate, they chose to give you and or whoever gets their organs the ability to live and enjoy life. So I am sure whoever it was that gave you a kidney is not wanting you to feel guilty or sad of depressed, they gave that kidney willingly and want you to enjoy life and enjoy the sound chance at having a wonderful bountiful life. I understand that you kinda feel responsible and guilty but that is human nature and the sign that you have a big heart. Go share your story with the world and enjoy every day that I am sure your donor would want you to. I know if I was the donor I would want you to be happy and enjoying life at its fullest. If you need to talk please look me up I would love to hear how you are doing. Blessings.

[Alfredmynewkidney]

I received a deceased donor kidney and feel very sad for the family of my donor. But I hope the fact that their loved one gave an amazing gift helps them with their grief. I feel bad that someone had to die for me to get this amazing gift but mostly I am thankful and take extra care not to waste this gift!

[bakermaker222 in reply to Alfredmynewkidney]

I, also, received a deceased donors kidney. I also know that it was a young woman. I asked the next day if I could write a letter to the family. My social worker said to wait and get through the healing process. A day does not go by that I am not grateful for my kidney. It is a difficult one to handle at times. Best of luck.

[Borg_Implants in reply to bakermaker222]

Your gratitude and vigilance keeping healthy is the best way to honor your gift.

P.s. I donated a car to the NKF.

[PostivelyJo]

I have a deceased donor kidney too. I have not experienced what you are going through. But our journeys are so personal. My own response initially was simply to get through things, 15 months on when I find myself dwelling on the family that donated it is with gratitude and with a sense of responsibility to them and me to TRY to live in the present and with awareness. Give yourself time and do not be hard on yourself you are going through rapid change and are taken very very strong drugs which take there toll.

Keep an eye on things and if you find feelings don’t shift or become overwhelming or too repetitive perhaps ask for help via your renal team for specialist counsellor who will have insight into your complex feelings.

Mindfulness meditation - google Proff Mark Williams Oxford - can be hugely helpful to loosen the grip repetitive anxious thoughts have on ones daily lives .

Congratulations and good luck

[Cazzy41]

I am almost 3 years post op. First off congratulations on your transplant. But in answer to your question the answer is yes. I think about them more than I should be and it drives me crazy. If I stop thinking about then I feel guilty for forgetting then for 20 minutes or so. I ended up asking to see the Renal Psychologist and we are working through these issues at the moment. Please talk to your team and ask for some help that’s what they are there for. Don’t suffer alone please. Most of all have a wonderful Christmas and start enjoying that priceless gift xxxx

[Ynnep]

Hello Rmatthew,

I received my new kidney from a deceased donor. The Gift of Hope organization (USA) gives transplant receiptiants a booklet before they leave the hospital. In it they make a suggestion that you write a letter to the donor's family stating a little of your history and how that sacrifice has helped you. They suggest that you use first name only and to keep your anonymity as much as possible. After completion, you are instructed to give to your Transplant Team and they will forward to Gift of Hope to send on to the donor's family. Sometimes the family chooses to respond back (not in my case). I think it helps you to put your gratitude into words. I remember the first Christmas after I received the kidney and took a few minutes to remember that the donor family was spending their first Christmas without they family member. The point here is that our gratitude to the donor and his/her family put everything in prescriptive.

I wish you peace, love and hope for the brighter future that you now have as a result of this precious gift.

Merry Christmas!

[WYOAnne NKF Ambassador]

I think we all have those guilty feelings to some extent. My deceased donor was only 16 years old, Ryan. I remember crying for him on the way to the hospital. For me, I was able to reach out to my donor family, by writing them a letter of thanks. The mother responded right away with a picture of her son and a little about him. I have kept up with that correspondence for 21+ years now, always telling the family what I was doing because of their son's GIFT.

My part is to keep Ryan's GIFT safe by taking my meds, having my labs done on time, keeping all of my doctor appts., and reporting any issues or problems to my nephrologist. My creatinine continues to be 0.9 - 1.1 ....21 years later.

Ryan became an organ donor when he got his drivers' license. He was involved in a tragic car accident and became a donor. It was his decision to do this.

Have you written to your donor family? You may find a lot of peace of mind with this. You can contact your transplant center and they can help you with that.

Live your life to the fullest in remembrance of your donor. Your donor, if he/she could would not want you to feel guilty! The GIFT OF LIFE your donor gave you is a true gift that is meant for you to LIVE and enjoy! Remember that you received this amazing GIFT and need to take of it and nurture it! Be appreciative!

If this continues contact your transplant team and see about getting some help.

Merry Christmas! Celebrate your GIFT!

[WYOAnne NKF Ambassador]

Also, what has helped me, is to give back! Don't know if you have volunteer groups in the UK that get the word out to the public about the importance of ORGAN DONATION!I have belonged to the Wisconsin Donor Network and now in Wyoming the Donor Alliance. I also became a public speaker and have shared Ryan's story, my donor, and how I came to need a transplant. It has been rewarding to me, to get the word out about organ donation, so that someone else can receive the GIFT OF LIFE!!

Check with your transplant center.

[Rmatthew]

Hi all, Thankyou for your replies, I think I will talk to my transplant team at my next clinic visits, because although I’m eternally grateful, the feelings having about the poor family and person just stays stuck in my head. My kidney is working fantastically (got my bloods back today from Tuesday) and I’ll continue to do the best care I can for the kidney and myself.

These page have helped me a lot recently, to feel less alone going through transplant and able to talk to other people going through similar situations.

I hope you all has a lovely and safe Christmas.

[AGratefulMan]

Hi Mathew . I had my transplant 4 years ago on the same night as the pulse night club shooting . Actually I was less then 5 miles from the horrible incident . My wife and I could hear the ambulances and, helicopter coming back from the scene to the hospital that I was recovering in .The next morning I awoke to the news of what happen. This sent me into a guilt trip that even today comes back to my thoughts . How had so many died the same night that I was given life . I decided to live my best life in honor of my donor and those that died that night. I guess in short the best way to fight the guilt is to live for your donor . Live like you never have before.

[mingmiley]

The first night after the transplant, i don't know if it's because the amount of prednison they gave me, I woke up middle the night feeling like laying in abyss--freezing cold all over, my body, the room........., and i just dreamed a long haired woman whole body, hair was blood...,i immediately got out of bed, and knelt on the floor by the hospital bed, claiming Jesus blood to cover me, then this kind of thing no more happened. But during the 16 years post transplant life due to the low emotion personality I was the prednison really made me more depressed. it's after the transplant life I heard that transplant is not for the mental patient, It will make it worse.