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fbgibbons672
@fbgibbons672

Posts: 1
Joined: Sep 11, 2017

Living Donor

Posted by @fbgibbons672, Sep 11, 2017

I am a match for my sister’s kidney transplant and will be heading to Mayo next month for evaluation. My sister has told everyone she knows about me, even refers to me as her “kidney mama”. I understand she is excited and I am as well, but now I wonder how I will feel if I don’t “pass” and she has to continue her waiting and dialysis. Its a huge responsibility and a huge honor to be able to do this, but…..

REPLY

Thanks for your post, @fbgibbons672. We are so pleased that you posted on Mayo Connect! I can understand the mixed feelings you must be experiencing right now. I am sure that your sister appreciates the efforts you are making on her behalf and appreciates your willingness to help her. You are to be commended on your efforts to help your sister, regardless of the outcome. I’m not sure if we have any other living donors on Mayo Connect, but I’d like to introduce you to some people who have posted here, please meet @contentandwell, @lcamino. The volunteer mentor of this group is @rosemarya (who is currently on vacation and will be in touch with you when she returns) and @lisalucier who is a Moderator for Mayo Connect.

We all wish you well as you travel to Mayo. How far will you need to drive to get to Mayo? We look forward to hearing from you again, so will you keep us updated as to how you and your sister are doing?

Teresa

@fbgibbons672 – Well I am one waiting for a living kidney donor so I don’t know what you are experiencing but I can identify with the gratitude and excitement your sister is feeling. One thing to keep in mind with the Mayo Clinic is that they can use a donor chain so if you are not a match, but are a suitable donor, Mayo will arrange to give your kidney to someone else and your sister can get that person’s kidney. It’s like paying it forward and Mayo will arrange, between the three locations, who can benefit from your kidney and then your sister can get a kidney from another person who is a good match for her. I believe they have done it up to 8 people in a chain. I’m afraid I’m not explaining it very well and I don’t know how to give you links but if you search the Mayo Clinic website you will find a better explanation for a donor chain. Not all transplant centers do this and it is a major perk for someone getting a kidney transplant from a living donor.

Even if you are not a suitable donor for anyone your offer is beyond generous. I’m not sure words can truly express how a person feels who is in need of a transplant and someone is willing to make the sacrifice for them. Thank you for setting an example and being so generous.

@IWantToBelieve

@fbgibbons672 – Well I am one waiting for a living kidney donor so I don’t know what you are experiencing but I can identify with the gratitude and excitement your sister is feeling. One thing to keep in mind with the Mayo Clinic is that they can use a donor chain so if you are not a match, but are a suitable donor, Mayo will arrange to give your kidney to someone else and your sister can get that person’s kidney. It’s like paying it forward and Mayo will arrange, between the three locations, who can benefit from your kidney and then your sister can get a kidney from another person who is a good match for her. I believe they have done it up to 8 people in a chain. I’m afraid I’m not explaining it very well and I don’t know how to give you links but if you search the Mayo Clinic website you will find a better explanation for a donor chain. Not all transplant centers do this and it is a major perk for someone getting a kidney transplant from a living donor.

Even if you are not a suitable donor for anyone your offer is beyond generous. I’m not sure words can truly express how a person feels who is in need of a transplant and someone is willing to make the sacrifice for them. Thank you for setting an example and being so generous.

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@lcamino I think you explained it quite well! But it is something that is a little difficult to visualize so we developed an infographic to help explain the process. You can find it on Pinterest: https://www.pinterest.com/pin/230668812143069480

Additional information can also be found here: http://www.mayoclinic.org/departments-centers/transplant-center/paired-donation/gnc-20203914

@fbgibbons672 Hope this helps explain a donor chain and Mayo’s paired donation process.

@IWantToBelieve

@fbgibbons672 – Well I am one waiting for a living kidney donor so I don’t know what you are experiencing but I can identify with the gratitude and excitement your sister is feeling. One thing to keep in mind with the Mayo Clinic is that they can use a donor chain so if you are not a match, but are a suitable donor, Mayo will arrange to give your kidney to someone else and your sister can get that person’s kidney. It’s like paying it forward and Mayo will arrange, between the three locations, who can benefit from your kidney and then your sister can get a kidney from another person who is a good match for her. I believe they have done it up to 8 people in a chain. I’m afraid I’m not explaining it very well and I don’t know how to give you links but if you search the Mayo Clinic website you will find a better explanation for a donor chain. Not all transplant centers do this and it is a major perk for someone getting a kidney transplant from a living donor.

Even if you are not a suitable donor for anyone your offer is beyond generous. I’m not sure words can truly express how a person feels who is in need of a transplant and someone is willing to make the sacrifice for them. Thank you for setting an example and being so generous.

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@NatalieR – Thank you!

@fbgibbons672 Welcome to Connect, it really is a wonderful resource with truly great people participating.
Please do not worry about not “passing”, it certainly is not your fault or something that you can change if you do not. It is so loving of you to be prepared to do this for your sister. I hope for you to pass and for you and your sister to have easy recoveries from the surgery. When I was in for my liver transplant the woman in my semi-private room was there because she had donated a kidney to her husband. She was really great immediately. I have no idea how her husband was doing but I did run into her at one of my post-transplant appointments and they were both doing very well.
It’s such a blessing to have someone willing to donate for you, whether or not they work out to be a match.
JK

I know what you are feeling. I am scheduled to go to Mayo in Rochester the week of Oct 9 for testing. I am hoping to be a donor for my husband and have all these fears about not passing. We are the same blood type so that is a plus. Just have to leave it in God’s hands and the capable people at Mayo.

@fauneconner

I know what you are feeling. I am scheduled to go to Mayo in Rochester the week of Oct 9 for testing. I am hoping to be a donor for my husband and have all these fears about not passing. We are the same blood type so that is a plus. Just have to leave it in God’s hands and the capable people at Mayo.

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@fauneconner – You are going to the best place in the country for transplants so you can be confident that their answer is God’s will for your husband. I can’t imagine what you are feeling but I know your husband is overwhelmed with your love for him as you attempt to give him an organ. Remember Mayo uses paired organ donation for kidneys if that is what organ you are being tested for (explanation and links in posts above). All the best and please let us know how things turn out.

If you feel up to it I would love to hear what the testing is like as I’m asking people to be a living kidney donor for me and I really don’t know what process they will have to go through. It would be nice if I could answer some of their questions or explain in more detail what they are signing up for.

Lynn, I think the testing will be very similar to what my husband went thru in July in his evaluation for a kidney transplant. They have told me CT of the abdomen, pelvic area; echo cardiogram, ekg, chest xray, blood work, urinalysis and another urinalysis tests that takes about 2 12 hours to see how quickly your kidneys process I think. I will also meet with the same assortment of team members as recipients–nephrologist, donor nurse, dietiician, social worker, pharmacist, surgeon, etc.

@fauneconner

Lynn, I think the testing will be very similar to what my husband went thru in July in his evaluation for a kidney transplant. They have told me CT of the abdomen, pelvic area; echo cardiogram, ekg, chest xray, blood work, urinalysis and another urinalysis tests that takes about 2 12 hours to see how quickly your kidneys process I think. I will also meet with the same assortment of team members as recipients–nephrologist, donor nurse, dietiician, social worker, pharmacist, surgeon, etc.

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@fauneconner – Thank you so much for sharing both your experiences! I have been wondering what my future held and figured I will just have to be patient and wait until I meet with the transplant team. I have PKD and am wondering if that is why your husband needs a transplant. No need to answer that question if you prefer not to. Best of luck!

Lynn, high blood pressure damaged his kidneys unfortunately.

@fauneconner – Wow! I don’t think I have heard of that before. My husband wants to be my donor but some of his health issues might not allow him to. Safe travels and just keep praying.

My husband has struggled for years with high BP and it has scarred his kidneys. Now he has to keep his BP higher than normal in order for his kidneys to filter at all. It is a balancing act.

@fauneconner

My husband has struggled for years with high BP and it has scarred his kidneys. Now he has to keep his BP higher than normal in order for his kidneys to filter at all. It is a balancing act.

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@fauneconner – I had no idea that was what high bp for a years does. I knew it was bad for your heart but did not know it damaged your kidneys. So sorry to hear this but so glad you are willing to donate to your husband. I think you should feel positive because as long as you are healthy they can always use the paired kidney chain if you are not a match. Best of luck and keep us up to date if you want a cheering section for you and your husband.

Thank you, Lynn. I will. Three weeks away from Rochester. Hoping for good results and that we can move forward. What is your GFR at this point? My husband’s is around 18.

@fauneconner

Thank you, Lynn. I will. Three weeks away from Rochester. Hoping for good results and that we can move forward. What is your GFR at this point? My husband’s is around 18.

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@fauneconner – My GFR is 22. I will meet with the transplant team once it is 20 (national standard) which my nephrologist predicts will be in the next year (by the end of 2018). My disease, PKD, has a fairly predictable rate of speed of kidney failure although nothing is set in stone.

Is your husband feeling ok? I assume he is not on dialysis yet? My goal is to avoid dialysis altogether as that is ideal for the most successful kidney transplants. It sounds like you two are being proactive as well.

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