All different feelings and pregnancy/doner question

[lisamgoldberg]

Hi Everyone,
I may be donating my kidney to my father this summer. I am freaking out, but then on one hand, I am feeling that I have to do it and how could I not. It is really hard because I two small children at home, one daughter age 2 and one daughter 10 months. My husband and his whole family is against me doing it. My younger brother is also a match but he seems to be chickening out. I may have to be the older sister that steps up. I am just nervous, since my girls are so young. My brother has one child and a live in nanny and he is not the one who puts his babies to bed each night, I have to hold one of them and his child can walk. My family and I would have to hire extra child care to help take care of our two kids. I also am concerned b/c I may want to get pregnant again in a few years. I know they say there really are not any complications with that, but both my daughters were born premature, I have some cervical issues, and I am worried that adding another element may set me back if I do want to get pregnant again, also not to mention I am in in my late 30's, they call that Advanced Maternal Age.
I am so torn about what to do. I still have to go for more testing, but I feel like I may be the one.
I also like to live my life a bit more than my brother, meaning I like to have some cocktails once in a blue moon and have coffee daily. Can I continue having all of these things?
HELP!!!!

[Fr Pat]

Dear Lisa,
     It may be helpful to keep in mind that a living kidney donation does not HAVE to come from a close family member. Matching is not that difficult. I would suggst that your family make sure that your father's friends, co-workers, neighbors, church/synagogue members, club members, old alumni, etc. know that he needs a kidney transplant and that living donation is possible and pretty safe (many people still do NOT know about living donation, or incorrectly believe that a match is difficult to make.) People in good health can donate in their 50's and 60's. There may be healthy people of your father's age, more free from immediate family responsabilities, who would be happy to volunteer once they knew of the need and the possibility. Don't be shy--get the word out. There have been many examples of co-workers, neighbors, etc. stepping up to donate even though they were not great friends of the patient. Also remember that donations from deceased donors are available, even though the waiting time is sometimes long. Don't feel backed into a corner. Think it over well and consider all the options.
     Also note: while many donors have later given birth without difficulty, statistics from Europe following up large numbers of kidney donors have noted that there is a slight but noticable increase in complications of pregnancy among kidney donors, so it appears that there may be a small increase in risk involved. Consult your doctor who knows well your past medical history.
    best wishes,
       Fr. Pat

[sherri]

Lisa,

Deciding to become a living donor is a big step. It takes lots of research, deep thought, weighing ones options etc. The good part about kidney donation is that yoru intended recipient has options. As a daughter I am sure you feel extremely responsible (maybe that has been your role in your family), oligated, guilty, pressure both internally and externally and of course love for your father. There are options for your Dad now until you decide, together with your husband what is the best course of action for your family. Your Dad can be on dialysis. This will not prevent him from getting a transplant. Depending on his age there are deceased donation programs for older recipients, where he may be offered an older deceased organ that would not be an appropriate match for a younger donor. This may allow him to move up on the list. University of Maryland has this program so you can ask about that. As Fr. Pat mentioned there are others who may not even know about his need and would be willing to test. There are also paired exchange programs where one donor donates to another recipient and their donor donates to your recipient. So maybe there were initail people who tested who don't match your Dad but could match someone else. What I am trying to convey to you, is not to feel cornered. If you decide that donation surgery is not in yours, your husband's and your children's best interest at this time your Dad could get a kdiney from another source.

If you are not sure of what you want to do yet perhaps hold off on continuing in the testing process. Passing each test adds more pressure and it will be hard to make an unbiased decision. Are you able to speak with your Dad openly about your fears and concerns? Is he willing to take a kidney from a child? Or would he be willing to "give you permission" to back out seeing how stressful this is. Maybe he is not aware of your feelings.

Lastly, I would suggest speaking with a mental health professional like a social worker or psychologist either at the hospital or on your own and together with your husband. You need a safe place to express your feelings and go about making a decision. You are not a bad daughter of less loving daughter if at any point you decide this is not the optimal time to compromise your health. You are a loving wife and mother something I am sure your parents would be proud of.

Family donation is so complex, misunderstood by the transplant centers and not given the appropriate amount of support (IMO). I am sorry that you are going through this. Whatever your decision, this group will be here for you. Just so you know, there are others on here for whatever reason to decided not to donate. Perhaps you can speak with those people and see how it worked for their families. We hear so much from donors who donated and speak about their own health and their recipient's outcomes. It would be helpful to hear from the other side as well.

Take care and keep us posted.

Sherri

[ohtobeahayes]

Hi Lisa!
Father Pat and Sherri really said it all perfectly. I'm only here to speak about having young kids and surgery. I had a hysterectomy in August 2009, gall bladder out in Dec 2009, and donated my kidney in July 2010. I have four children, and when I had the first surgery they were 7,5,4,2.  No one needed to be carried overly, but I had one in full time school (we had to drive them to school at the time), one in half day (another trip there and back), preschool, and then my youngest needed constant care, of course.
You WILL need help with the kids, absolutely, if you go this route.  My husband was home for 4 days, and then returned to work, and my parents stepped in then to help.  I was down for 2 weeks following both of the major surgeries. I did not carry Jordan for the full six weeks and tried not to too much until 8 weeks or so, just to be sure, because who wants to have to go back in?
So...there it is from that vantage point, and I'm just one person. It's doable- but only if you have help.  Any middle of the night stuff-you can't go running in and scoop the baby up from the crib, moving will be sore for a bit....you will be "off duty" for awhile. Your healing will need to come first because those kiddos are going to continue to need you, as will any future kids you have. You get one chance to heal well the first time around (for what we can control, anyway).
Maybe at the transplant clinic they would allow you to speak with one of the social workers sooner rather than later? They are all about donors and the issues that are present. It is unfortunate that all clinics are not the same, I am hoping that your dad's is one of the really good ones, as was the one I was at. The donor advocates were outstanding, and although it was a little different (alot different, actually) for me as a non directed donor (those emotional ties and connections make a humungous difference), you should be completely supported no matter what you decide. You will be here, for sure!
Good luck, and lots of love.
Nicki