Second guessing my recepiant's behavior........has this happened to anyone else?

[midwestgal]

I tested for my sister-in-law in October of 2010. We live in different states, so I had my blood drawn by my doctor & sent it to her testing center. The test had to be repeated, so in order to avoid further delays, I traveled to her hospital (3 hrs away) to have it done in January 2011. It took about 3 weeks before we found out we were a match. I was the only person who tested for her, so I was thrilled & took it as a sign that I was doing the right thing   My sister-in-law, on the other hand, had a bit of a breakdown after hearing the news and wasn't sure SHE wanted to proceed.  It was late March before she decided she WOULD like to have the transplant done. In April/May, I made two more trips to her hospital to have all of my testing done. I was confirmed as a healthy donor   My Sister-in-law still needed to get her blood sugar levels stablized.  Time ticked by.......I didn't hear from her again until October and she still wasn't ready.  By November 2011, I was starting to think she had changed her mind about the transplant again & sent her an email asking how she felt.......I did not hear back from her until January 5th, 2012..... when she emailed me to say her levels were stable & she was ready to have this done.  I spoke with her on the phone that evening and she made a few comments that now having me rethinking my decision.  She not only insinuated that I should have been in more contact with her (as if I had been dropping the ball with our communication), but let me know that she would like to have this done before the weather improved, because she had 12 weeks of recovery & didn't want to be limited in her activities during the summer months.  I am now left feeling a bit unappreciated.  She is not yet on dialisis and is feeling pretty well, so she tells me.  I have not backed out, but am loosing sleep from second guessing this decision. Has anyone else had a simular situation and how did you handle it? 

[audrey12]

Seriously?  I would have the doctors tell her that your blood was retested and you had a positive crossmatch and cannot be her donor.  That's the "way out" for donors who change their minds.  I think you'd have nothing but heartache with this one.  God forbid, if the transplant were to fail or something go wrong down the road (it's rarely a smooth ride for the recipient), the woman would blame you.

Since you're in the right mindset, I recommend you let the doctors tell her you're no longer a match and consider finding another recipient or hold off until she really has the right attitude and you're convinced.

God bless you for stepping up and your sincere wish to help.  You're a special person.

[Fr Pat]

Dear "Miswestgal",
      From the experiences I have read of, and the donors & recipients I have met over the years, it seems clear that there is a LOT of variety. Some recipients are very appreciative of their donors and very cooperative and anxious to have the transplant done. Other recipients may have a very hard time even accepting the fact that they are sick, and even feel angry or resentful over the fact that they need a transplant. Many recipients find it easy and beautiful to accept the gift of a donation. Other recipients hate to feel dependant and find it humiliating to have to receive someone else's help, and so may even resent the donor for "showing them their helplessness". There are all kinds of reactions to illness in our lives.
     So you might find it helpful to honestly reflect on what you are expecting from this experience if you decide to continue. You mentioned that you felt "...left feeling a bit unappreciated." Living donors certainly deserve much appreciation, but not all receive it. Whether appreciation is a "must have" or not would certainly affect your decision. Sometimes it is only when things like this happen that we get to clarify our own thoughts.
     Also keep in mind that you are not the only alternative for your sister-in-law. Although the waiting list for transplants from deceased donors is long in some parts of the country many such transplants do take place successfully. And since she is not yet on dialysis her health situation may permit such a wait without grave consecuences. So, think it over carefully. But if you are counting on feelng appreciated you should understand that it is not guaranteed either before or after the transplant.
     best wishes, and congratulations on your generosity in even considering a kidney donation.
                     Fr. Pat

[Scott337]

My two-cents, for what it is worth...

I donated October 2010 to a young man I had never met, until the day before surgery.  The family is incredible and were very welcoming and gracious when we met them.  This didn't change during and immediately after the surgery.  Over the next 10 months, my recipient experienced surgical complications causing numerous infections at the site of the ureter/bladder connection.  These infections ultimately caused the donated kidney to be compromised and to have to be removed. 

After the kidney was removed, I asked to visit my recipient in the hospital but according to family, he was not "up" to that.  Since that time, I have not heard from my recipient or any of his family, other than one sister whom has kept in contact with me all along.   My wife has harbored feelings that the recipients family was somehow ungrateful considering what I (and our family) went through in donating the kidney and that they have not appropriately acknowledged the potential feelings of loss on my part.

After much thought about this, I have concluded and believe this...I made a conscious decision to donate; to someone I didn't know; without thought of reward or thanks; to do something positive with my own life and most of all;   I made the decision to donate unconditionally and to accept, without regret, the consequences of what I chose to do.     

In my opinion;  You had noble intentions I'm certain, of donating a kidney to your sister-in-law and I'm also guessing your decision was not based on how much you liked her, simply because she was a relative or based on how appreciative she would be.  I'm supposing you rather decided for much more legitimate reasons to give a gift, without conditions and her attitude probably shouldn't or ultimately won't change that for you.

As a final note, think of this.  What a marvelous thought it would be for any of us, that our gift to someone who really was so limited in health, mobility, freedom and in certainty for their future; could anticipate getting on with their life so normally and so unlimited as making plans to be free from dialysis, feeling poorly and uncertain by the time the nice weather comes. 

I hope and pray your decision becomes more evident and easy in the days ahead.  Good luck my friend and God Bless you for wanting to help someone in such a giving and special way.

Scott   

[Aries7]

Hello Midwestgal and welcome!
As someone who is married to a person who recieved a transplant, I thought I would respond as well. I donated a kidney to my Husband in 2009. He had kidney problems since childhood, so I and the rest of the family always knew he would eventually need a transplant. However, that was always going to happen "someday". Well, when "someday" became "now", I can tell you that it still hit my Husband (as well as me) very hard. There was a lot of disbelief that this was happening to him. It was also very, very hard for him to ask any family members for a kidney. He was very fortunate in that he never really had to ask, his Parents, sibling and I all came forward and offered to be tested. (Both of our kids did too, but as they were ages 18 and 20 at the time, we wanted to avoid that if at all possible). In the end, I ended up being his donor. But I can tell you, it was a really hard thing for him to accept a kidney from anyone living. I know he had great concerns that it could negatively affect our health. Between him not feeling well (His kidney function was at about 12% at the time of his transplant) and having to deal with the fear of how a transplant would affect his own life, and having to worry about me going through surgery and having to live with one kidney, it was alot to deal with.

I am in no way trying to make excuses for your sister-in-laws behavior, or downplay what you are offering to do for her. You have been most generous to even come forward and offer, much less do through all the testing and commit to donating. I am just saying that maybe your sister-in-law is having a really hard time dealing with this, and maybe she is concerned for your well being or that you will change your mind. It is a hard thing for a recipient to get their hopes up, just in case things don't work out, for whatever reason. People really do react in some strange and unusual ways sometimes when dealing with something so stressful. Please know that in no way am I trying to talk you in to or out of donating. I just wanted to offer another persepctive of what she may be thinking/feeling and may help explain her actions.You will need to go with your heart on this one, and do what you feel is right for you.

I wish you all the best with this. Please do keep up updated as to what you decide. Please also feel free to post with any other questions or thoughts you may have. We are all here for you.


Linda

[jatopa]

Hi midwest gal,
If you are losing sleep over this, then you should talk to a donor advocate.   There should be no pressure whatsoever on you to donate.  There may be other potential donors who could come forward.   My only question is...was she always like this or is the disease having an effect on her personality?  My brother went from Grumpy to his old Happy self within days of our surgery.   
Either way, don't do it if your heart isn't in it.
Jatopa   

[SugarMonkey]

Wow, that's awful. I'm sorry to hear that. It does sound like she does not appreciate you, and so I understand why you have this dilemma. It takes a person with a big heart to be a living donor. It isn't easy, and to feel unappreciated only naturally makes you second guess it. You always have the option of backing out - my doctor even told me that he would take the blame if necessary. I'm sure your doctor would do the same. However, only you know how you would feel backing out, and what definitely comes into play is the type of relationship the two of you had prior to any talk of kidney transplant. Would you feel guilty for backing out regardless of the recipient's behavior or would you be okay with it knowing she's not acting appreciative? One thing for certain is that you should NOT be losing sleep over it. You need to take care of yourself.
I donated to my step-sister and there was never a question. However, we've always had a good relationship. It's been 2 1/2 weeks since the surgery and we text each other every day now - which we never did before. It may slow down as time goes by or there may come a time when we go back to talking less often as we did before. Whatever may happen, I know she is appreciative and that IS important.

Whatever choice you make, I wish you well.

[Donna Luebke]

How is it that you are the only one who tested?  Were you the first one to be tested?  Any others offered that you know of?  How good is the match since you are not blood family?  Would do a little more research.  Why did the test have to be repeated? What test?  Is your family physician involved?  Do you have friends or family who support you? 

Have you gone through any further evaluation or met with anyone from the transplant team?  While they are evaluating you, you should evaluate them.  Make sure you are fully informed and feel comfortable with your decision. 

Since living donation is an elective procedure, should be when and if it works for you.  Not the recipient's decision.  You should not feel pressured or coerced by anyone, including your sister-in-law.

[midwestgal]

I have to admit, when I first posted my story, I had regrets & tried to find a way to delete it.  I was afraid people would read my post and think that I was being petty.  I am so glad I didn't find a way to delete it!  Everyone's comments are very much appreciated!!!!  I needed support & opinions and you have come through for me.  Thank you so much!!!!! 
 
My sister-in-law and I are not close, we have never spent any time together because we have always lived in different states and my family is a bit disfunctional.  I am basically donating to a stranger. 

I am the only person who tested for her because the others backed out or declined from the start or are in poor health themselves.  Her own sister did not want to be tested using the "what if my kids need one later" excuse.  Which if fine! If someone is not comfortable with it, I totally agree that they shouldn't do it.

My brother & his wife have no children of their own, are in their early 40's and have always been able to focus on themselves without any outside distractions.   
I can't help but wonder if that is part of the problem............she has never had to see beyond herself.

Having two daughters, I have spent half my life giving up my wants to provide for my chilren, so it only seems natural to put myself out to help someone else.   Plus it just makes me happy to bring a smile to someone else's face    


I will not back out on her. I have said all along that if it's meant to be, it will happen. Perhaps I am being tested on faith & patience with this situation

I do have a question: any idea how long the testing a donor has done is good for?? A year?  I am worried that If she continues to drag her feet, I will have to have all of those tests over again and am not eager to repeat them.

[Scott337]

You're right to wonder and probably correct.  At least some testing may need to be done over to get more current/relevant levels, but general health screening may still be valid.  It's for your protection, so embrace the opportunity to keep track of your own health. 

I think you really sound like you're getting your head wrapped around the entire circumstance with the offer to test and donate.  I wish you well friend and please, keep us updated on your progress and do feel free to lean on those of us here.  Someone, and generally many, will have great advice and stories to share with you.  It's a great support site.

God Bless.

Scott   

[Aries7]

I am glad to hear back from you and hear and that, as Scott said, you are able to wrap your head around all of this. If I remember correctly, I want to say that at our center, most of the tests were good for somewhere between 6 months and a year (I think it varied a bit for each test.) It is possible though that each center is a bit different. I know it can be a bit of a pain, but as Scott said, it is for your own good if some tests do need to be repeated.

I am so glad you found us and that you posted. Please keep us updated as to how things progress, and feel free to post as much as you like. There really are a lot of wonderful people on here with great advice and who are very willing to share their stories and experiences.

Best of luck to you!

Linda

[midwestgal]

Update......she has completed her testing & has an appointment with a surgon tomorrow!  Next week, the transplant team will evaluate her test results and determine if she can have the transplant. 
The ball is rolling!!   

Scott.....your right!  Thanks:) 

[Scott337]

Excellent news..right   

[Aries7]

I am really glad to hear that things are back on track and your sister-in-law is getting her testing done.

Let us know how it goes!

Linda

[midwestgal]

So much has happened since my last update!!!   First of all, my sister-in-law has a new attitude!!  She seems to be totally on board with the transplant and is very grateful for the gift of a new kidney:)  It's like dealing with a whole new person:) We have a surgery date scheduled!!!!   April 3rd.  Excited & nervous at the same time.   Thank you for your support & encouragement!!!  I am sure I will be asking plenty of questions in the weeks to come & feel very blessed to have such a strong support group on this site who have first hand knowlege of what I am feeling & going through:)   Thank you for much!!!!