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Author Topic: Any Donors out there Parents of Young Children?  (Read 5676 times)

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Offline Jessiebooth

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Any Donors out there Parents of Young Children?
« on: August 22, 2013, 02:14:57 PM »
I am 25 years old, my son is 2 and a half, and my daughter is 10 months old. I am scheduled to donate my kidney to my 16 month old niece on Sept 18th. What scares me the most about donation is the thought that I might not be able to be there for my children (due to death, complications, etc.). All the what-if's just kill me and overwhelm me with anxiety. I know donation takes a large dose of faith, but I am scared a lot of times. Has anyone here ever donated while they had young kids at home? What are some questions I should ask myself here with my situation? I honestly have that "too late to back out now" feeling, and I think that is just overwhelming me even more. Any advice, perspective, or shared stories would be of great help. Thanks all!

Offline sherri

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Re: Any Donors out there Parents of Young Children?
« Reply #1 on: August 22, 2013, 05:32:34 PM »
Jessie,

I'm glad you reached out to this forum. There have been some young donors on this site but for obvious reasons most people with very young children like yourself don't volunteer to donate. I remember one young donor was donating to her spouse and of course there are others who donate to their own child. I hope some of the young moms could help out on this one.

I am also a mom, of 4 daughters and donated when they were 19, 18, 14 and 11. I think the feeling that you have, "the what ifs" never goes away no matter how old your children are. I did worry that if something happened to me my children would be left with just my husband to raise them. It is a scary thought. I prepared my will, health care power of attorney,  wrote a pre surgery letter to my husband and thankfully with grace of God, none of those documents needed to be put into place. But anytime you have surgery, and even more so an elective surgery, we do think about the risk. It is an anxious time.

Because you have young children who need your physical attention, lifting, bathing, changing etc you will need to make sure that you have enough help around the house when you return home. There is no lifting more than 10 lbs after surgery for at least 6 - 8 weeks (like a c section or hysterectomy). Listen to those guidelines so you do not end up needed more surgery to correct a hernia. So make sure you do not play the martyr and say you don't need anything because you will. If possible, the recipient or other family members may be able to help defray the cost of some extra cleaning or babysitting help. If possible talk this out as a family so that everyone will be in safe and healthy place.

How does your partner/spouse feel about the donation? Do you have a support system from parents? This also plays a factor. Use the services at the hospital or through your own insurance if you need to have a few meetings with the social worker to discuss this prior to surgery. I know you mentioned you feel like you can't back out now, but you actually could. Yes, there would be difficult emotional feelings but if you are not 100% sure you are ready to do this now you can speak with your nurse coordinator and just say you need to decline at this time. The match to donate needs to be compatible on a medical and psychological level. They will let the family know that something came up during the testing that makes you ineligible to donate at this time. You could also postpone the surgery if you feel the time is not right. I'm not sure of your 16 month old niece's health history but if she is on peritoneal dialysis she may be able to stay on that a little longer until you know for sure you want to do this now or until another donor is found. You are less than a year from giving birth yourself and have a full plate so it may be a vulnerable time for you to make a truly informed decision.

How did you feel about meeting with the transplant team? Were the doctors, nurses and psychologist on board with you donating being that you are a young mom with an infant and a toddler? Did they have concerns? Reach out for help from your team. That is their job. Some are better supporters than others.

I hope that you are able to come to peace with whatever decision you make. What helped me was having a supportive husband and friends and knowing that I was in good professional hands. Being on the other side is much better. I am sorry that you have been put in this position. It isn't easy but please know you have the love and support here on this forum whichever way you choose. Please keep us posted. Would love to know how things work out for you and your family.


All the best,

Sherri

Sherri
Living Kidney Donor 11/12/07

Offline Nancy

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Re: Any Donors out there Parents of Young Children?
« Reply #2 on: August 23, 2013, 03:49:10 AM »
Jessie,

It is never too late to back out.  IMHO I think you should go with your gut feeling, if you have doubts and feel it's not right then it isn't.  I can't believe the transplant team would let you proceed under these circumstances.  Have you shared your feelings with the social worker and your donor advocate?  Did your social worker or donor advocate not strongly advise you against this?  Either one of these two team members should be stepping in and intervening on your behalf.  It's unfortunate they let it go this far.

You have to be your own advocate.  I just recently donated and I know how much you probably want to donate but now is the time you need to be thinking about your family and your health.  My heart goes out to you as I know you must love your niece very much.  I am sure this must be a very dire circumstance or your wouldn't be considering donation at this time.

God bless and good luck with whatever you decide to do.

Offline Jessiebooth

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Re: Any Donors out there Parents of Young Children?
« Reply #3 on: August 23, 2013, 04:01:11 PM »
I just overwhelm myself sometimes. I have spoken to the donor social worker about all my fears and such. No one is advising me any which way, and I don't think that would be right for them to do. I wouldn't call these doubts so much as anxieties. Some days are better than others. Today is a better day. I know I just need to trust in God's plan for me and have faith that everything will be okay, or work out as it is supposed to. I understand that complications can and do happen, and that I must consider all of these risks. Just sometimes when considering the risks I practically drown myself in what-if's. I sought a second consult with the surgeon and coordinator to ask more questions and feel better about the situation. After reaching out for support, they have been very helpful. I am in regular contact with the social worker as well. I also see a counselor on my own who helps me just vent and bring perspective to things.

So, all that said, how on EARTH does anyone stop themselves from being overwhelmed by all the what-if's?? It KILLS me sometimes!

Offline Jessiebooth

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Re: Any Donors out there Parents of Young Children?
« Reply #4 on: August 23, 2013, 04:09:31 PM »
I was glancing over your reply and realized I missed the part about gut feeling. I knew my niece needed a kidney over a year ago. She has been on dialysis since 8 weeks old and is now 16 months old. When they originally found out she needed a kidney, everyone assumed one of her parents would be the one to donate to her, but I somehow KNEW it would be me. I had no reason to think so, but it was this feeling I had. Six months later, they found out she was born with a different blood type than her parents; my blood type. I decided to get tested and even though others apparently also went through testing, it was like I KNEW it would be me. The others slowly were not approved for one reason or another, or backed out or whatever. By June I discovered I was a healthy, approved donor match, and the only one at that. It was honestly like I knew that entire time it would me. I have always said that. So, it's more than a gut feeling. It's like I always knew I would. I did always know... somehow. It's so strange.

Offline elephant

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Re: Any Donors out there Parents of Young Children?
« Reply #5 on: August 26, 2013, 01:59:47 PM »
Dear Jessiebooth,

I believe it is possible for a donor incompatible with a recipient to search for a paired kidney exchange with other incompatible pair(s).  Have the parents investigated this possibility?  In this way, one of them could be the donor.

Love, elephant

Offline Jessiebooth

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Re: Any Donors out there Parents of Young Children?
« Reply #6 on: August 28, 2013, 12:11:10 PM »
I guess they are not healthy enough to donate. It's not like I don't want to do it, I just wish I could calm my fears.

Offline elephant

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Re: Any Donors out there Parents of Young Children?
« Reply #7 on: August 29, 2013, 07:59:49 AM »
Dear Jessiebooth,

I think it's hard to be the "only" available donor feel like you are responsible for making a life or death decision for someone you love.  I was also the "only" donor for my Dad.   I'm sure I would have been ready to donate even if I wasn't the "only" donor, so I focused on that thought and tried to avoid negative ideas.  But I did discuss them with my husband, and that helped. 

Make sure you accept every offer of help for your post-surgical period since you will both need and deserve support.  Cooking, housework, child care - get help lined up in advance. 

Love, elephant


Offline Fr Pat

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Re: Any Donors out there Parents of Young Children?
« Reply #8 on: August 29, 2013, 07:36:11 PM »
     Just to add another thought: sometimes people (even non-relatives) are much more willing to donate when the recipient is a little child. Getting the word out to churches/synagogues, clubs, alumni associations, etc. might bring in other offers. Transplanted kidneys, unfortunately, do not last forever. While we can hope that more medical progress will be made, at present you have to assume that the child will need another transplant in 10 or 20 years, and perhaps a third later on in life.  If a donor in his/her 40's or 50's would volunteer to donate now, you could still be available as "back-up"and still healthy enough to donate 20 years from now when a second transplant may be needed. So, consider all the options.
    Fr. Pat

Offline KellyN

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Re: Any Donors out there Parents of Young Children?
« Reply #9 on: August 31, 2013, 04:16:16 AM »
Jessie - I donated when my boys were young, not as young as yours are but they were 3 and 5 years old at the time. I donated to my friends 3 year old daughter and had that same feeling as you...I just knew. The worries and anxiety are totally normal and I think are much more when you have children of any age. I would be more concerned if you had no worries at all. Even though I "knew" from the very begining that I would be her donor I went back and forth many, many times in my head about doing it and wondering if I should back out. I felt guilty for considering backing out and guilty that I wanted to go forward with the donation if something were to happen to me. The worries never went away and some days drove me crazy but in the end I knew in my heart what I needed to do. The day of the surgery I was at peace with my decision and had no worries. (which by the way freaked everyone out that I was so calm)

The what if's dont really go away, but in the end you have to be comfortable 100% with your decision and know that you have the help and support you need weather you decide to donate or not. I wish you all the best and if you want to talk further please feel free to send me a private message.

Kelly
Donor to 3yr old Mira 5/13/09

Offline DP

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Re: Any Donors out there Parents of Young Children?
« Reply #10 on: August 31, 2013, 03:55:10 PM »
KellyN,

Do you have similar thoughts now after donating or are you at peace with your decision? I am struggling the same as Jessica.

Offline KellyN

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Re: Any Donors out there Parents of Young Children?
« Reply #11 on: September 01, 2013, 03:09:05 AM »
DP - I am still very much at peace with my decision. When I get to see my receipent and how well she is doing and the fact that she gets to be a regular little girl and do all the things that she should be doing at her age it brings me so much joy and happiness.
I still have problems related to my surgery, I had an open surgery and ended up with both nerve and muscle damage that I will have to deal with everyday for the rest of my life. I am still learning how to deal with the pain and how to manage it but if I had to do it all over again and knew that this would be the outcome I would do it again in a heartbeat.
It is a very big decision and I hope that you find your peace as well, weather you decide to donate or not.
Donor to 3yr old Mira 5/13/09

Offline bradmac

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Re: Any Donors out there Parents of Young Children?
« Reply #12 on: September 03, 2013, 12:09:43 PM »
My kids were 8 and 5 when I donated to my younger brother, and I was almost overwhelmed with the same concerns.  Of course, my recovery was the same as the majority of these donations, and my brother is still doing great.

I hope you can find peace with whatever final decision you make.

Offline dave

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Re: Any Donors out there Parents of Young Children?
« Reply #13 on: September 05, 2013, 09:25:46 PM »
Dear Jessiebooth,

I donated to my father this summer, and I have two kids ages 3 and 5.  My wife and I both work full time and share the child care equally.  I also agonized a lot over the decision, and I worried a lot about how my family would manage if I died.  You're right, the "what-ifs" can be overwhelming at times.  But I did my research, took a sober look at the risks, considered the consequences of not donating, and decided in the end to follow my gut.  Now on the other side, my Dad is doing great on his new kidney, and I am mostly recovered.  It was a happy day when I realized I could safely lift my kids again without hurting my abdomen.

You've got to go with what feels right for you.  Good luck, whatever you decide!

Dave
Donated left kidney to Dad, June 20, 2013.

 

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