Decided to be a Living Donor: How to gain support from spouse

Posted by greent424 @greent424, Jun 10 3:41pm

I made the decision to be a living donor and will be starting evaluation process soon (my guess, within a couple of weeks). I am married and have two kids (almost 3 and 4). My husband doesn’t support my decision due to fear of risk in being a donor. I have discussed it with him but he still doesn’t want me to. I’m not sure how to gain his support. Has anyone had this issue? Thank you for your time.

Thank you for making such a generous decision! I think you should take your husband along to your appointments. That way he can ask questions of the doctors and hear it from them. After that the two of you can discuss it further.
Blessings and best of luck,
JoDee

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@jodeej

Thank you for making such a generous decision! I think you should take your husband along to your appointments. That way he can ask questions of the doctors and hear it from them. After that the two of you can discuss it further.
Blessings and best of luck,
JoDee

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Thanks for the idea. I will definitely try. Thank you.

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Hello @greent424,

I would also like to welcome you to Mayo Connect and I heartily agree with @jodeej that this is a very generous decision you are making. I can also understand the difficulty of not having your husband's full support. That must be hard for both of you. You do not mention which organ you are planning on donating or if it is for a family member or someone else you know. These are probably important considerations.

On Mayo Connect we do have some discussions on the topics of being a Living Donor. Here are the links to some of these. I would encourage you to read them and then feel free to post or ask questions of any of these Members by clicking on the Reply button below their post. Perhaps your husband can read them as well.
https://connect.mayoclinic.org/discussion/living-donor-process/
https://connect.mayoclinic.org/discussion/wed-may-20-20-kidney-donation/
https://connect.mayoclinic.org/discussion/a-post-donation-check-in-one-year-later/
What is your husband's greatest concern about your organ donation, @greent424?

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@hopeful33250

Hello @greent424,

I would also like to welcome you to Mayo Connect and I heartily agree with @jodeej that this is a very generous decision you are making. I can also understand the difficulty of not having your husband's full support. That must be hard for both of you. You do not mention which organ you are planning on donating or if it is for a family member or someone else you know. These are probably important considerations.

On Mayo Connect we do have some discussions on the topics of being a Living Donor. Here are the links to some of these. I would encourage you to read them and then feel free to post or ask questions of any of these Members by clicking on the Reply button below their post. Perhaps your husband can read them as well.
https://connect.mayoclinic.org/discussion/living-donor-process/
https://connect.mayoclinic.org/discussion/wed-may-20-20-kidney-donation/
https://connect.mayoclinic.org/discussion/a-post-donation-check-in-one-year-later/
What is your husband's greatest concern about your organ donation, @greent424?

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Hi Teresa, Thank you for your response. I'm looking to donate my kidney and to a member in the "community" that I know of but not personally.

I will definitely check out the links. I tried searching for existing discussions but I didn't have any luck. So, I started a new one.

Some good news: I had a conversation with him last night after we put our kids to bed. Tried my best to ease into the conversation and told me I really need his support. I explained him the evaluation process. He's a man of few words so it's a bit hard to tell how he was feeling. I think he's slowly accepting the idea and will begin to support me more.

I think his greatest concern is for me to not have a backup kidney in the future if I were to ever have kidney issues or if one our kids need it. He does not want me to suffer from the risks associated with surgery.

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You are doing an amazing thing! Even if you go through the evaluation & decide it's not something you can do, you have that much more info to give someone else that considers living donation.
Every medical person you see from now through surgery is on your team. They want to make sure YOU can safely donate and live a long healthy life afterwards. They will test more things than you knew were possible to test, both physical & mental. I still think the evaluation process was harder than the actual donation!
You can decide at any time not to follow through with donation.
If at some point down the road, you need a kidney, you will go to the top of the list for recipients.

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Thank you for wanting to save another life through donation. I am a living donor of 3 weeks. I named a recipient, like you, that I had never met but had heard of through my Bible study. I wasn't a match for her so I agreed to donate in advance with the idea of her moving to the top of the National Kidney Registry. In my case, 4 people received a kidney because of the chain and my named recipient is waiting for her match at the top of the registry.
I don't know which Mayo you are near but I went through the Scottsdale Mayo and my team is fabulous answering any of my questions and bringing up things I hadn't considered just to make sure I had all the information I needed to make a wise decision for me. If your husband goes with to your appointments or even just a couple or they will do a phone call with him. They really want everyone to feel their questions were answered. You will experience so very long days of testing at Mayo but they want to be thorough and it giave me a glimpse into what life may be like for the person awaiting a kidney almost every day. To me it helped solidify my donation choice. Your team will explain over and over again that you can change your mind for any reason at any point until you are sleeping on the table. They really want you to feel secure. Since you have small children, I really suggest you have a plan for about 2 months after surgery to give them an active outlet. I'm 3 weeks out and although I've experienced almost no pain (never took anything stronger than Tylenol after coming home), I am surprised at how easily I become tired and listless. I am probably quite a bit older than you so that may have something to do with it. I had my post op yesterday and I'm healing great. The surgeon said that the extreme fatigue after seems to be the #1 thing that living donors experience in her opinion. I am so happy to have been able to help others. Looking back, I would make the same choice I did. If I can answer any questions for you, I am happy to try.

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@mauraacro

You are doing an amazing thing! Even if you go through the evaluation & decide it's not something you can do, you have that much more info to give someone else that considers living donation.
Every medical person you see from now through surgery is on your team. They want to make sure YOU can safely donate and live a long healthy life afterwards. They will test more things than you knew were possible to test, both physical & mental. I still think the evaluation process was harder than the actual donation!
You can decide at any time not to follow through with donation.
If at some point down the road, you need a kidney, you will go to the top of the list for recipients.

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Thank you. I will let my husband know as I am not as worried about my future health as he is 😉

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@danhoe

Thank you for wanting to save another life through donation. I am a living donor of 3 weeks. I named a recipient, like you, that I had never met but had heard of through my Bible study. I wasn't a match for her so I agreed to donate in advance with the idea of her moving to the top of the National Kidney Registry. In my case, 4 people received a kidney because of the chain and my named recipient is waiting for her match at the top of the registry.
I don't know which Mayo you are near but I went through the Scottsdale Mayo and my team is fabulous answering any of my questions and bringing up things I hadn't considered just to make sure I had all the information I needed to make a wise decision for me. If your husband goes with to your appointments or even just a couple or they will do a phone call with him. They really want everyone to feel their questions were answered. You will experience so very long days of testing at Mayo but they want to be thorough and it giave me a glimpse into what life may be like for the person awaiting a kidney almost every day. To me it helped solidify my donation choice. Your team will explain over and over again that you can change your mind for any reason at any point until you are sleeping on the table. They really want you to feel secure. Since you have small children, I really suggest you have a plan for about 2 months after surgery to give them an active outlet. I'm 3 weeks out and although I've experienced almost no pain (never took anything stronger than Tylenol after coming home), I am surprised at how easily I become tired and listless. I am probably quite a bit older than you so that may have something to do with it. I had my post op yesterday and I'm healing great. The surgeon said that the extreme fatigue after seems to be the #1 thing that living donors experience in her opinion. I am so happy to have been able to help others. Looking back, I would make the same choice I did. If I can answer any questions for you, I am happy to try.

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Thank you, Tammi. I am actually far from the Mayo Rochester where the recipient is. So, it may not be possible for him to come to my appointments. (He has close relatives in MN so we may try.) I don't have any hesitations about donating. Good to know about the possible impacts on my kids.

One question I do have is regarding the evaluation process and how long that takes. Since I'm on the west coast, I wondered if some of the tests can be done locally or if it can be done all at once within a couple of days. I am thinking about calling the hospital to ask these questions, just for planning purposes.

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If you have the need for a kidney in the future you're automatically put to the top of the kidney transplant list. One question the social worker asked me is how I would feel if my husband or one of my children needed a kidney in the future and I didn't have a kidney to give. My answer was that I was meant to be their advocate and caregiver then but it did make me stop and think for quite a while. The other question the social worker asked me that really made me think was what if the recipient of my kidney doesn't follow care guidance and basically doesn't take care of my gift how I would feel. It made me think a lot. My response was I would most likely grieve a bit but ultimately what I gave as a gift is not mine anymore and the person is entitled to not take care of my gift if that's what they choose. There were many questions my team brought to light but those were the two that really made me stop and think for quite a bit. My social worker called and talked to my husband since I had him listed as my caregiver. It's important that whomever you list as your caregiver gets their questions answered.

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@danhoe

If you have the need for a kidney in the future you're automatically put to the top of the kidney transplant list. One question the social worker asked me is how I would feel if my husband or one of my children needed a kidney in the future and I didn't have a kidney to give. My answer was that I was meant to be their advocate and caregiver then but it did make me stop and think for quite a while. The other question the social worker asked me that really made me think was what if the recipient of my kidney doesn't follow care guidance and basically doesn't take care of my gift how I would feel. It made me think a lot. My response was I would most likely grieve a bit but ultimately what I gave as a gift is not mine anymore and the person is entitled to not take care of my gift if that's what they choose. There were many questions my team brought to light but those were the two that really made me stop and think for quite a bit. My social worker called and talked to my husband since I had him listed as my caregiver. It's important that whomever you list as your caregiver gets their questions answered.

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Yes, I've thought about those questions already. 🙂 Thanks.

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@greent424

Thank you, Tammi. I am actually far from the Mayo Rochester where the recipient is. So, it may not be possible for him to come to my appointments. (He has close relatives in MN so we may try.) I don't have any hesitations about donating. Good to know about the possible impacts on my kids.

One question I do have is regarding the evaluation process and how long that takes. Since I'm on the west coast, I wondered if some of the tests can be done locally or if it can be done all at once within a couple of days. I am thinking about calling the hospital to ask these questions, just for planning purposes.

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They may have a sister site where they're able to do your testing local to you. At least the preliminary testing to see if you're a match. If you're coming from out of state for the more advanced testing, they will schedule you some long days (if that's the case I would encourage you not to have the kiddos with). There's a whole separate scheduling system for transplants that is very friendly in my experience. Make sure you let them know what your desires are and they try to work with them in mind. My husband never came to any appointments or even to my surgery (he came to the hospital to take me home that's a requirement for whomever you list as your caregiver). If you're flying in you might need to choose a caregiver wherever you are staying since you will be unable to fly for 1 week.

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@greent424

Thank you, Tammi. I am actually far from the Mayo Rochester where the recipient is. So, it may not be possible for him to come to my appointments. (He has close relatives in MN so we may try.) I don't have any hesitations about donating. Good to know about the possible impacts on my kids.

One question I do have is regarding the evaluation process and how long that takes. Since I'm on the west coast, I wondered if some of the tests can be done locally or if it can be done all at once within a couple of days. I am thinking about calling the hospital to ask these questions, just for planning purposes.

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I was evaluated to see if I could donate part of my liver to my husband. My eval was done at Mayo Rochester and took about 3 days I believe. If you talk to them you could possibly have some testing done near you and have the results sent to them. I'd had my mammogram and a colonoscopy done, so I didn't need to have those repeated.
JoDee

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@jodeej

I was evaluated to see if I could donate part of my liver to my husband. My eval was done at Mayo Rochester and took about 3 days I believe. If you talk to them you could possibly have some testing done near you and have the results sent to them. I'd had my mammogram and a colonoscopy done, so I didn't need to have those repeated.
JoDee

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Good to know. Thanks!

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@danhoe

They may have a sister site where they're able to do your testing local to you. At least the preliminary testing to see if you're a match. If you're coming from out of state for the more advanced testing, they will schedule you some long days (if that's the case I would encourage you not to have the kiddos with). There's a whole separate scheduling system for transplants that is very friendly in my experience. Make sure you let them know what your desires are and they try to work with them in mind. My husband never came to any appointments or even to my surgery (he came to the hospital to take me home that's a requirement for whomever you list as your caregiver). If you're flying in you might need to choose a caregiver wherever you are staying since you will be unable to fly for 1 week.

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After reading your message, I checked their website that shows a map of "care network". Nothing in WA state 🙁 Hopefully I can get some tests done here and just send the results, at least for the preliminary testing.

Good to know regarding flight restrictions after transplant.

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@greent424

After reading your message, I checked their website that shows a map of "care network". Nothing in WA state 🙁 Hopefully I can get some tests done here and just send the results, at least for the preliminary testing.

Good to know regarding flight restrictions after transplant.

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@greent424, I welcome you and I commend you for your generous act of love by considering living kidney donation. You have already received the best information from the exerts, the patients here on Connect, who have replied to you and shared their experiences with you.

I have an additional layer of information for you as you and your spouse are discussing your potential donation. If you click on the blue text, you will be directly taken to the Transplant Pages where the Mayo where you can access the Living Donor Toolkit as well as other transplant information from Mayo Clinic.
https://connect.mayoclinic.org/page/transplant/
I am a recipient, with a deceased donor, so I don't have any experience to share. However, I am here and ready to help you locate any information.

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