New and kinda freaking out

[ac711a]

Hi,

  I have been reading the posts on here for a while now.  I am donating a kidney to my mom througth the paired exchange program and we have been waiting 2 years.  Well,  we got the call today that through a chain of 8 people, the transplants should be happening around the end of June.  I have been through all the testing and all the talking to social workers and up until I got the call I was confident in my decision.   I still want to donate, just feeling anxious now about everything.  I read and read about it but the real person stories here help me the best.  So...   what if something happens to me during surgery or I am not healthy afterwards?  How will that affect my relationship with my mom?   What kind of guilt or feelings happen if the recipient rejects the kidney?  Would I feel that I wasted my kidney?  My son has polycystic kidneys so we know that someday he will need a transplant.  I have talked to his doctors about my decision and as my son is 18 and has 99% kidney function they say it will be a long time before he needs one.  Yet I still worry, thats what moms do.  I really thought I was ready for this but with the 2 year wait, I guess I got taken off guard.

[PhilHoover]

You are asking very, very good questions.    Most of your questions are/have been considered by your Transplant Team---or at least they should have been.

In all the medical testing, the Transplant team members are just as concerned about YOU, the donor, as they are about the recipient--and vice versa.

I'd talk to my pastor/priest/minister, and also to the living donor coordinator....

Praying for you here.

Phil Hoover
Chicago

[Sarah in Maine]

I donated for the benefit of my mother through the New England Program for Paired Kidney Exchange.  It ended up being a "list exhange" where I gave to a stranger at the top of the wait list and that allowed my mom to recieve a dececeased donor kidney within weeks instead of years. 

I can't speak to what happens between you and your mom.  Also, the cause of my mother's kidney failure was not genetic, and so my daughter does not have any unusual risk of kidney disease.  I know that I would be MORTIFIED if something happened to my daughter and she needed a kidney.  But, I also know that she has cousins and aunts, and, without any guaranty, I still feel that the chances of her finding a donor are pretty good if the need was ever there (and she has a low risk of the need).

How have things been between my mom and me since the donation?  Well, she didn't want me to donate in the first place, I had to convince her to 'allow' me to donate.  Since then, things have been good.  In a sort of joking/family-friendly way, I have some hallowed status as the Good Daughter who can Do-No-Wrong.  But, I'm also concerned that my mother may hesitate to let me know what is REALLY going on with her health now...in a way that is very different from pre-transplant when I was the go-to sibling for her to explain her health situations to.  Luckily, things seem to be good for now.  But I don't trust that I would know for sure if they were not so good.

Lucikly, my health has been fine, so I can't say how things would be if I was one of the unfortunate few to suffer complications from the donation.  I suspect that my mother would be crazy-guilty if I did have any complications, but (with 20-20 hindsignt and no complications) I suspect that the risk of that guilt is easy to bear compared to the risk of her untimely death or life-long dialysis experience.

We cannot predict the future, but only live in the present.  I wish you the best with this difficult decision.  Please do not hesitate to email me if you'd like more info on my own experience.
Regards.
Sarah

[lawphi]

I was in your position.  Never in a million years did I think a kidney would actually be found for my high PRA husband.  He was on the table within three months of listing at a new center.   

You have a tough position regarding your son.  However, the technology is changing and he would be better off receiving a kidney from a younger donor through a swap program. Most programs try to match the age of the donors within a few years.

My surgery will be at the end of June as well. I wake up in a panic sometimes.  My coordinator has been really great at hand holding and making sure my recovery expectations are realistic.  I met some great people on this site that donated at my center. 

It really helps that my husband has received his kidney already and is doing fantastic. 

[Scott337]

I think you're courageous just for considering donation.  I donated last October to a young man I'd never met.  I wasn't ever really apprehensive until I met with the surgeon and nephrologist who informed me of the risks, especially considering I was healthy and didn't have to have the surgery or donate the kidney.  I still wanted to donate, but for the first time really considered the potential for complications and how they would ultimately affect my wife, my adult daughters, work, etc.... 

Your transplant coordinator and social worker should be your supportive and constant advocates for making certain you are well informed/educated about the paired-transplant process, that you are both physically and emotionally prepared to donate and recover.

There are risks and your transplant team should make certain you are well informed.  Coming to terms with those risks are a personal issue.  You'll know if you've come to terms with them and hopefully you have an adequate support system both within the transplant team and through friends and family. 

I pray your decision brings you peace either way.  Thanks for considering such a generous act and the gift of life for someone else.

Scott

[Jane Zill]

 I was in a similar position because I had a brother and a sister who needed a transplant.  But they were my peers, not a parent or a child.  In my opinion, your first obligation is to your son.  In my situation, it turns out that my sister received a deceased donor transplant that has served her perfectly for nearly 30 years and my brother received the living related transplant and did not do well.

I am now the mother of two teenage boys.  I would be sickened if one of them needed a transplant at anytime in their lives and I would not be able to donate.  I personally disagree with the advice you have received to ignore your son’s need because it is in the future sometime.  To me, that is akin to not saving for college – you know it’s coming – prepare.  Life goes by fast – as a mother of a teenager, I’m sure you know how quickly time can fly.

I encourage you to consider that the burden of your son’s illness now, even with great kidney function, is already a psychosocial one.   Does he anticipate renal failure in his future?  How does this impact his launch into adult life, his beliefs about his future, and his confidence in a positive future?  Does he worry about finding a donor?   How might his self-esteem be impacted by your decision to donate now to your mother, in light of his uncertain future?  Even if he demonstrates maturity and stoicism, this should not be taken as evidence that he is not impacted in someway.  Is he aware of his grandmother’s poor health and that he might have a similar future?  How might your decision to donate to your mom impact his feelings towards you and towards her?  What if he can’t find a donor?

How long before your son has kidney failure? If you give to your mother, how long is the graft expected to last? 

What is your renal function?  Has anyone estimated for you how much renal function you should regain after donation?   Will you have renal insufficiency?  If you have long-term health problems, and they emerge when your son might become symptomatic, will you be available to assist him?  What if his illness causes psychosocial problems, like job loss or divorce?  ESDR, as you know, can be devastating.

Regarding short-term outcomes for yourself, be sure that you know who is doing your surgery and that this person has done many of them – not 10 or 15.   In the context of KPD, you may not have the luxury to choose your surgeon.  Be certain that the person who is to do your surgery is also the person who receives your informed consent.

I wish you the best as your sort through this very difficult situation.
 
   Your,  Jane Zill

[ac711a]

Thank you for all the responses,  gave me alot more to think about.  I have calmed down quite a bit now am positive about my decision.  My mom is my best friend and I want to do this for her.  I am very lucky that my son and my mom are also very close, so he supports my decision.  I do worry about my mom not being truthful after the transplant, so as not to worry me.  That was not something I had thought of yet so thanks for the heads up.  Again,  thank you all and as time gets closer I will keep you all updated

[PhilHoover]

Still thinking about you here...and please keep us updated on what is happening. We want to be praying for you when the surgery time comes.

[ac711a]

Thank you,   waiting for word on when surgery will happen.  There are so many people involved and trying to get us all to agree on a time seems to be taking longer than I thought it would.  I am confident in my decision now but nervous about surgery.  will keep you posted when I know anything more.  Again, thank you, the support given here is amazing