Kidney transplant - The Journey from the Donor's Side

Posted by mauraacro @mauraacro, Jan 2, 2018

I’m headed to Rochester on the 10th for surgery on the 12th. I’m excited and nervous! I didn’t know the recipient but have gotten to “meet” her and some of her daughters through phone calls and emails.
I’ve had labs done at my doctor’s office and went to Mayo a few weeks ago for a million more tests. My case was presented to the donor board a few days before Christmas and I was approved and notified the same day. It seems like everything took so long and now is going so fast.
I’m interested in hearing from donors but haven’t had a lot of luck. It seems like the recipients are the ones who post the most, which gives me some info and reassurance but it would be nice to hear from the other side too.

Just a side note, my daughter, also my donor, bought me the new BP monitor. I had an older one. She wants to make sure that her kidney, now mine, is well taken care of. She’s such a caring person and I’m so blessed to have her! Of course I can’t leave out my two other daughters who were our caretakers and are pretty terrific, too!
🙏🏻

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@cmael

Just a side note, my daughter, also my donor, bought me the new BP monitor. I had an older one. She wants to make sure that her kidney, now mine, is well taken care of. She’s such a caring person and I’m so blessed to have her! Of course I can’t leave out my two other daughters who were our caretakers and are pretty terrific, too!
🙏🏻

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@cmael It's so nice when your "children" are grown up and you really like the people they have become. It sounds like you have great daughters. I know I have a great son and daughter. I am especially happy that they are friends now, they were really not when they were growing up.
JK

Liked by cehunt57, cmael

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Here is an update on my non-directed kidney donor process. I completed the testing last Friday -except for an appointment with the psychologist this morning. Everyone I met was so wonderful and caring. All of my test results are great except for one thing. The CT angiogram of my kidneys show I have two arteries to each kidney which is good ( I found out from the surgeon you can have one to up to four arteries to each). The not good news is the upper. larger arteries both have mild FMD which is fibromuscular dysplasia. This means a small segment of each one has some "beading" which looks like a beaded necklace. The surgeon said it isn't a problem from his standpoint but others on the team may be more conservative. The nephrologist met with me next and at first wasn't very positive. He was concerned it may cause harm to me later ( hypertension or kidney disease) if I only have one kidney. After he talked with the radiologist he changed his mind and said it was "minor" and since I'm in my 50's with normal blood pressure he doesn't think it will be a problem. He said the team will have to review everything and decide. SO the team meets tomorrow (I don't know what time). The coordinator will call me after they meet to let me know. I REALLY want to do this. I can't explain why but it is really important to me. Please pray that everything will be ok and I will be approved! Thank you!

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@hopefulgirl

Here is an update on my non-directed kidney donor process. I completed the testing last Friday -except for an appointment with the psychologist this morning. Everyone I met was so wonderful and caring. All of my test results are great except for one thing. The CT angiogram of my kidneys show I have two arteries to each kidney which is good ( I found out from the surgeon you can have one to up to four arteries to each). The not good news is the upper. larger arteries both have mild FMD which is fibromuscular dysplasia. This means a small segment of each one has some "beading" which looks like a beaded necklace. The surgeon said it isn't a problem from his standpoint but others on the team may be more conservative. The nephrologist met with me next and at first wasn't very positive. He was concerned it may cause harm to me later ( hypertension or kidney disease) if I only have one kidney. After he talked with the radiologist he changed his mind and said it was "minor" and since I'm in my 50's with normal blood pressure he doesn't think it will be a problem. He said the team will have to review everything and decide. SO the team meets tomorrow (I don't know what time). The coordinator will call me after they meet to let me know. I REALLY want to do this. I can't explain why but it is really important to me. Please pray that everything will be ok and I will be approved! Thank you!

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Prayers sent!!!! Hope the team makes the right decision for you:-)

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@hopefulgirl

Here is an update on my non-directed kidney donor process. I completed the testing last Friday -except for an appointment with the psychologist this morning. Everyone I met was so wonderful and caring. All of my test results are great except for one thing. The CT angiogram of my kidneys show I have two arteries to each kidney which is good ( I found out from the surgeon you can have one to up to four arteries to each). The not good news is the upper. larger arteries both have mild FMD which is fibromuscular dysplasia. This means a small segment of each one has some "beading" which looks like a beaded necklace. The surgeon said it isn't a problem from his standpoint but others on the team may be more conservative. The nephrologist met with me next and at first wasn't very positive. He was concerned it may cause harm to me later ( hypertension or kidney disease) if I only have one kidney. After he talked with the radiologist he changed his mind and said it was "minor" and since I'm in my 50's with normal blood pressure he doesn't think it will be a problem. He said the team will have to review everything and decide. SO the team meets tomorrow (I don't know what time). The coordinator will call me after they meet to let me know. I REALLY want to do this. I can't explain why but it is really important to me. Please pray that everything will be ok and I will be approved! Thank you!

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I'll be thinking positive thoughts for you!
It's good news either way. You will either be able to donate or you will have caught an important part of future medical needs.
I hope you are able to donate but with so much up to date, first hand information you could also be so helpful in encouraging someone else to think about donation.
I hope it works out for you!

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@hopefulgirl

Here is an update on my non-directed kidney donor process. I completed the testing last Friday -except for an appointment with the psychologist this morning. Everyone I met was so wonderful and caring. All of my test results are great except for one thing. The CT angiogram of my kidneys show I have two arteries to each kidney which is good ( I found out from the surgeon you can have one to up to four arteries to each). The not good news is the upper. larger arteries both have mild FMD which is fibromuscular dysplasia. This means a small segment of each one has some "beading" which looks like a beaded necklace. The surgeon said it isn't a problem from his standpoint but others on the team may be more conservative. The nephrologist met with me next and at first wasn't very positive. He was concerned it may cause harm to me later ( hypertension or kidney disease) if I only have one kidney. After he talked with the radiologist he changed his mind and said it was "minor" and since I'm in my 50's with normal blood pressure he doesn't think it will be a problem. He said the team will have to review everything and decide. SO the team meets tomorrow (I don't know what time). The coordinator will call me after they meet to let me know. I REALLY want to do this. I can't explain why but it is really important to me. Please pray that everything will be ok and I will be approved! Thank you!

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@hopefulgirl my prayers are going up for you and your transplant team during this waiting time. As a person of faith I believe that the best plan will unfold, in the best way at the best time for those who put their trust in God with their lives. My family and I have been in a similar situation as you and have seen this in process. My fil and myself are transplant recipients, one daughter is a donor, another daughter attempted to be a donor but is currently deferred. I am currently placed on inactive status for kidney transplant because the CKD has improved & become stable. The team determined that I am “too healthy at present for transplant!” Wishing and praying the best for you. Cheryl

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@cehunt57

@hopefulgirl my prayers are going up for you and your transplant team during this waiting time. As a person of faith I believe that the best plan will unfold, in the best way at the best time for those who put their trust in God with their lives. My family and I have been in a similar situation as you and have seen this in process. My fil and myself are transplant recipients, one daughter is a donor, another daughter attempted to be a donor but is currently deferred. I am currently placed on inactive status for kidney transplant because the CKD has improved & become stable. The team determined that I am “too healthy at present for transplant!” Wishing and praying the best for you. Cheryl

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@teresa2017 That's good at least that you are now too well to be considered for a transplant. I hope if your health deteriorates to the point where you do need a new kidney, that your wait will not be long.
JK

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Well, it's been a tough past few days. The transplant team decided I was not a good candidate to give a kidney. They decided the fibromuscular dysplasia of the two top renal arteries may cause problems for me later. I have had a difficult time with this. I have been praying about this and later going through the screening process and then testing – for the past year. I had time off arranged from work, a plan for care after surgery, had talked to my family and now it's just not going to happen. I know God has a reason and I need to trust Him. Ugh! I know I can be used in other ways to help others, I guess it will just take time to adjust. I asked about being a non directed liver donor but they said Mayo doesn't do non directed for livers. Good luck to those of you waiting to either donate or to receive a kidney. I'll be glad to answer any questions about the donor process for anyone that has them. Thanks for your prayers and encouragement!

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@hopefulgirl

Well, it's been a tough past few days. The transplant team decided I was not a good candidate to give a kidney. They decided the fibromuscular dysplasia of the two top renal arteries may cause problems for me later. I have had a difficult time with this. I have been praying about this and later going through the screening process and then testing – for the past year. I had time off arranged from work, a plan for care after surgery, had talked to my family and now it's just not going to happen. I know God has a reason and I need to trust Him. Ugh! I know I can be used in other ways to help others, I guess it will just take time to adjust. I asked about being a non directed liver donor but they said Mayo doesn't do non directed for livers. Good luck to those of you waiting to either donate or to receive a kidney. I'll be glad to answer any questions about the donor process for anyone that has them. Thanks for your prayers and encouragement!

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@hopefulgirl I am sorry for your disappointment. I can imagine how you must feel after being so ready to do this, and now not being allowed to. I am sure you will find different ways to help others though, that's good that you are moving forward with such a positive attitude.
JK

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@hopefulgirl

Well, it's been a tough past few days. The transplant team decided I was not a good candidate to give a kidney. They decided the fibromuscular dysplasia of the two top renal arteries may cause problems for me later. I have had a difficult time with this. I have been praying about this and later going through the screening process and then testing – for the past year. I had time off arranged from work, a plan for care after surgery, had talked to my family and now it's just not going to happen. I know God has a reason and I need to trust Him. Ugh! I know I can be used in other ways to help others, I guess it will just take time to adjust. I asked about being a non directed liver donor but they said Mayo doesn't do non directed for livers. Good luck to those of you waiting to either donate or to receive a kidney. I'll be glad to answer any questions about the donor process for anyone that has them. Thanks for your prayers and encouragement!

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@hopefulgirl I can read in your words how passionate you were about donating. I feel your disappointment. I'm glad you trust in God. He has a plan and I'm guessing there is something bigger & better in store for you. You are a super hero to all of us waiting for a transplant. I commend you for your courageousness & generosity. Your selflessness is beyond measure. God bless you.

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@hopefulgirl

Well, it's been a tough past few days. The transplant team decided I was not a good candidate to give a kidney. They decided the fibromuscular dysplasia of the two top renal arteries may cause problems for me later. I have had a difficult time with this. I have been praying about this and later going through the screening process and then testing – for the past year. I had time off arranged from work, a plan for care after surgery, had talked to my family and now it's just not going to happen. I know God has a reason and I need to trust Him. Ugh! I know I can be used in other ways to help others, I guess it will just take time to adjust. I asked about being a non directed liver donor but they said Mayo doesn't do non directed for livers. Good luck to those of you waiting to either donate or to receive a kidney. I'll be glad to answer any questions about the donor process for anyone that has them. Thanks for your prayers and encouragement!

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@hopefulgirl I understand your frustrations and sadness. As you said there are other ways for you to help. I tried to be my husband's donor but was unable to do so. It is so disappointing when you want to do whatever you can to help someone.
Prayers for peace and guidance for you.
JoDee

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@hopefulgirl

Well, it's been a tough past few days. The transplant team decided I was not a good candidate to give a kidney. They decided the fibromuscular dysplasia of the two top renal arteries may cause problems for me later. I have had a difficult time with this. I have been praying about this and later going through the screening process and then testing – for the past year. I had time off arranged from work, a plan for care after surgery, had talked to my family and now it's just not going to happen. I know God has a reason and I need to trust Him. Ugh! I know I can be used in other ways to help others, I guess it will just take time to adjust. I asked about being a non directed liver donor but they said Mayo doesn't do non directed for livers. Good luck to those of you waiting to either donate or to receive a kidney. I'll be glad to answer any questions about the donor process for anyone that has them. Thanks for your prayers and encouragement!

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hopefulgirl, I have heard others speak of their own disappointment after being unable to be a living donor. They also struggled with their emotions about it. As a recipient, (deceased donor) I think I can confidently say that your courage, your love, and commitment to be evaluated is a sign of HOPE to patients who are waiting for organs.
I look forward to continuing conversation with you whenever you feel ready.
Hugs.

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@hopefulgirl

Well, it's been a tough past few days. The transplant team decided I was not a good candidate to give a kidney. They decided the fibromuscular dysplasia of the two top renal arteries may cause problems for me later. I have had a difficult time with this. I have been praying about this and later going through the screening process and then testing – for the past year. I had time off arranged from work, a plan for care after surgery, had talked to my family and now it's just not going to happen. I know God has a reason and I need to trust Him. Ugh! I know I can be used in other ways to help others, I guess it will just take time to adjust. I asked about being a non directed liver donor but they said Mayo doesn't do non directed for livers. Good luck to those of you waiting to either donate or to receive a kidney. I'll be glad to answer any questions about the donor process for anyone that has them. Thanks for your prayers and encouragement!

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@hopefulgirl I applaud your efforts. We all do. Remember, the transplant team wants you healthy, also! Can you consider bone marrow or stem cell transplants to help someone, after all your testing? You are a hero.
Ginger

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@hopefulgirl how disappointing and frustrating, especially knowing that donors are needed and you were willing to be one. Thank you for sharing your story here. As @jodeej knows, not being able to donate is a reality and it helps for people to know that side of the story too and to be supported by people who have “been there”. By your sharing on Connect, you will help many.

I agree full-heartedly with @mauraacro that the positive outcome is that the medical team detecting FMD at an early stage that may have gone unnoticed. Should you wish to share with others about FMD, here is a discussion on Connect:

FFibromuscular dysplasia (FMD) https://connect.mayoclinic.org/discussion/discussion-fmd/

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Thank you Colleen! I didn't realize there was a group for FMD. It will be interesting to learn more.

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