Update From Super Anxious Future Donor

[Prelude_Sarah]

Hey everyone!  I posted back in January expressing my extreme anxiety about donating my kidney.  I have finally made the decision to donate to my little sister, age 23 (I'm turning 26 in on the 15th).  One of my concerns about donating was the fact that I don't have health insurance.  My family and I have been looking into the most reasonable options for health insurance, and have agreed to help me obtain it before the operation.  I have also had many of my questions answered by the hospital (finally!!); I got the coordinator to say the hospital would be responsible for any and all complications that could arise as a result of the operation (I was getting the run-around about what they are responsible for).  Also, I got the hospital to agree to see me at any point for up to two years following the operation if I'm concerned about kidney.  They can't serve as my primary care taker, but if I think I want to have my labs drawn at a random point post op, they will accommodate me (a victory!). 
After feeling at odds with the living donor advocate, I ended up sending an e-mail expressing all of my concerns.  I mentioned that I'd like to feel confident and comfortable with my team of doctors but because of the way they have disregarded many of my concerns, I did not feel that way.  After that e-mail, I got some results! 

Since the last time I posted here, another potential donor came along for my sister.  It turns out that she's a match, but only a 2/6.  Although I've decided I want to donate to my sister, I've been really struggling with the idea of being hasty in donating my kidney when we're blessed to have someone else step up right now.  My thinking is that we may not always be fortunate enough to have someone else volunteer to donate, but I will always be around.  If this person donates now, then I can donate later, and my sister (who has chronic kidney failure) will be able to live that much longer.  But the problem is, this other donor isn't done testing yet, and my sister is running out of time. 

And beyond that, my sister has expressed to me that she wants MY kidney.  She thinks my kidney would work the best for her.  So, I'm very excited to be able to help her.  But in the pit of my stomach I think about the fact that I can only donate my kidney once, and if I do it now, I can't do it later.  What if she needs another kidney in 12 years and no one else wants to volunteer at that time?  Will we regret the fact that I donated my kidney when there was someone else who also wanted to donate?  I just thought I'd express this concern here and see what people think...
I think the bottom line is what my sister wants,  and more so, needs.  So, I suppose I should just trust in the Universe that this is the absolute best option for her and for everyone else involved right now. 

I go with my sister to the hospital tomorrow morning to discuss a few more questions that my family has, and to possibly set a date for the operation.  I suppose it could be as soon as March 28th.  I'm so grateful for this forum, the one place I can voice all of my concerns with complete honesty.  All of your stories are very inspiring.  Thank you everyone, so much!!

Sincerely,

Sarah

[Aries7]

Hi Sarah!

It is great to hear from you again, and congratualtions on your decision to donate to your sister!

I am glad to hear that you will have health insurance before you donate - this is very important so it is great you will have it. I am also glad to hear that you are more comfortable with the hospital and medical staff - good for you for speaking up. It is imperative that you be confident and comfortable with the hospital and medical staff. They need to be just as concerned for you as they are the recipient.

In regards to the second donor coming forward, and if you should donate now or in the future, that is something that no one is going to be able to give a definite answer on. I can see how you are struggling with that, and it is a legitimate quesiton. Some things to think about - are you sure this person will not be available in the future should your sister need a second transplant? It is also possible that should you wait to donate in the future, that you may not be in a place to donate when the time comes, whether personally or medically.

You do not say if you have children (or if you want them) but given that you are age 26, one possibilty is that should your sister need a another kidney in the future, you may have young children at home at that time, or have something else going on in your life that you may not be in a place to donate. It is also always possible that a medical issue could arise and you are no able longer to donate.  You also do not know who else may enter your sisters life at that point and be willing/able to donate should she need another transplant.

These are all just possibilities and things to think about. I can see how much you are struggling with this and I really feel for you. While ultimately you are the one to make the decision if you donate now or in the future, my advice would be go with what you feel in your heart is the right thing do to, and have faith. You need to do what you feel is best for your sister and for you.
I truly wish all the best for you and your sister. Please do keep us updated as to how you are both doing and what you decide.

Linda

[livingdonor101]

Speaking of children, be aware that recent studies have shown higher pregnancy risks for living kidney donors. There are still a lot of unanswered questions on that one, so consider this in your decision.

While the odds suggest your sister will benefit from a transplant, there are no guarantees. I mention this only because your thought process seems to indicate your sister's improvement as a foregone conclusion. Since you're already experiencing ambivalence and anxiety, not preparing for the possibility for an adverse event could be quite debilitating for you.

I'm curious as to why this transplant center wasn't being forthright regarding their responsibilities toward you. If they perform the surgery, they are legally obligated to treat any complications that arise. They also legally obligated to report two years of followup on you (six months, one year, two years). It concerns me that they'd try to tiptoe around the issue.

Did you ask your transplant center about the LODN insurance plan? It would provide you with the coverage you need (including mental health services) for any donation-related issues.

You mention the 'living donor advocate'. Was that her title, or was she a 'coordinator'? According to CMS Final Rule 2007, the coordinator and advocate must be different people. In fact, the IDA (independent donor advocate) is not supposed to be involved in transplant activitiy in any other way. Was that the case?