I am so frustrated right now. I am a potential donor for my 15 month old niece who is in need of a new kidney. I was tested and was a match and approved as a donor and let my sister-in-law know I would like to donate. After that I heard nothing for months. Then my SIL goes in with her daughter to see when she would be big enough for surgery and at that time they told her that although she had not met her weight goal, she was long enough, and I am small enough that we could go forward with surgery. They even showed her a picture of the kidney that will be removed from me and put into my niece.
They told my SIL they wanted to shoot for a surgery date of Sept 4. My SIL contacted me about this and I didn't really know how to respond so I was just sort of like, "wow, that's great." And she told me the transplant coordinator would be in touch with me. Finally, two days later, the transplant coordinator sends me simply this, via email:
"Received a message from pediatric team that ******* is ready for surgery. Would you be able to donate September 4 th. You can call me tomorrow to talk about this."
So, I called her the next day and asked her if the following Wednesday would be possible, as I process payroll every other Tuesday and it would just work out better for me. She asked me if I really thought I could return to work in two weeks, and I said well I do have certain duties I need to perform and payroll is one of them. She began lecturing me on how this is a major surgery and recovery takes 3-6 weeks before a person is okay to go back to work on a part-time basis. I told her I am not trying to make light of this by any means, but that I cannot afford to simply be "off work" and I still need to perform my duties to keep a paycheck coming in. She got frustrated with me and said she would have the social worker call me back. She still has not.
I had asked the transplant coordinator in the past if I would be able to meet with the surgeon at some time prior to surgery and she said no, but that she could arrange a phone call possibly, but she never got back to me on that either.
As if that weren't enough, my husband currently works for my dad, and my dad has just been riding him so hard lately and just freaking out for no reason at all. My sister even got blown up at for asking my dad some advice. She talked to my mom and found out that it is because they are uncomfortable with my decision to donate, yet they won't talk to me about it! Bear in mind, my niece is from my husband's side of the family, and not a blood relative to me or my family, and this is why my parents are uncomfortable.
I also work for my sister, and when I tried telling her about my fears and anxieties regarding the surgery, she just asks me how much work I'm going to be missing because she "can't pay me to go take two months off to give a kidney." Thanks for the concern, sis.
My husband is supportive, but he's not the comforting type, and doesn't really know what to say to help any. I appreciate his support, though.
We have two very young children, an infant and a toddler, and they are literally my whole world. I tell people I am confident I can do this and still be a good mother to them, but now that there is a potential date in place it is scaring the hell out of me. I always want to be there for my babies. It's upsetting when I get into a negative spiral of thinking and start imagining everything that could go wrong. Ugh, I'm sure many others have been there too.
Now, don't get me wrong, I have zero intention of backing out on my decision, I just can't BELIEVE the total lack of support from MY family, and the professionals who are supposed to be MY donor team. If you really think my impression is that I will just hop out of bed after surgery and go back to work, why not do a better job informing me in the first place so you KNOW I know all there is to know. I don't know what to do to prepare at all, am I supposed to eat a certain diet? Stop drinking? Refrain from exercise? Why has NO ONE told me this? And my own family can't even come to me over the whole thing... It really leaves me feeling like I am just standing here all alone with no one around me.
The donor team sees me as a piece of meat, but I am an individual. I have a job, a husband, two beautiful babies I love more than life itself. I have financial responsibilities, morals, ethics, emotions that are all over the place right now.
God only knows how my family sees me; as an idiot, maybe.
I just don't know what to do. I can't stand the lack of support. It leaves me very scared, angry, frustrated, nervous, etc.
Have any of the other donors been through this feeling or had a lack of support?? What should I do???