Pre-transplant: GFR 21 Creatinine 2.2 NO Symptoms!

Posted by lisacohen1952 @lisacohen1952, Aug 24, 2021

Did anyone else fit into this category pre transplant?

Interested in more discussions like this? Go to the Transplants group.

Hi Lisa, I'm Katy, for months from Fall of 2019 to early 2020, my numbers were steady, Creatinine 4+ with a GFR of 8%. Diagnosed and put on transplant list. No symptoms from the top 5, but scheduled to prep for dialysis early 2020, until quarantine came to halt all non-essential surgeries. Then improvement followed, and now for some months my GFR is in the high teens. I could dance with joy! Well, except for this debilitating fatigue LOL, but I can't stop smiling. Except when I think about the realities of a transplant… I keep hoping for continued improvement. But my great team at Mayo takes excellent care of me, and they share hard truths with me including my need for a transplant, and have shown me why sooner is better than later. You are also pre-transplant… what are your thoughts, concerns?

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@katyrae

Hi Lisa, I'm Katy, for months from Fall of 2019 to early 2020, my numbers were steady, Creatinine 4+ with a GFR of 8%. Diagnosed and put on transplant list. No symptoms from the top 5, but scheduled to prep for dialysis early 2020, until quarantine came to halt all non-essential surgeries. Then improvement followed, and now for some months my GFR is in the high teens. I could dance with joy! Well, except for this debilitating fatigue LOL, but I can't stop smiling. Except when I think about the realities of a transplant… I keep hoping for continued improvement. But my great team at Mayo takes excellent care of me, and they share hard truths with me including my need for a transplant, and have shown me why sooner is better than later. You are also pre-transplant… what are your thoughts, concerns?

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Hi! Katy! Thank you so much for replying! Fingers crossed for you! I’m just nervous. Still early, but thinking ahead!

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@lisacohen1952

Hi! Katy! Thank you so much for replying! Fingers crossed for you! I’m just nervous. Still early, but thinking ahead!

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Being nervous has to be the most perfectly normal response to all this I would say! If you want to share, I'm here ❤

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@katyrae

Hi Lisa, I'm Katy, for months from Fall of 2019 to early 2020, my numbers were steady, Creatinine 4+ with a GFR of 8%. Diagnosed and put on transplant list. No symptoms from the top 5, but scheduled to prep for dialysis early 2020, until quarantine came to halt all non-essential surgeries. Then improvement followed, and now for some months my GFR is in the high teens. I could dance with joy! Well, except for this debilitating fatigue LOL, but I can't stop smiling. Except when I think about the realities of a transplant… I keep hoping for continued improvement. But my great team at Mayo takes excellent care of me, and they share hard truths with me including my need for a transplant, and have shown me why sooner is better than later. You are also pre-transplant… what are your thoughts, concerns?

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I had a preemptive transplant 3 years ago. My creatinine was over 2 and gfr was 13. Luckily, my daughter was a match. I was not on dialysis, but had a meeting with a representative to look at the types of home dialysis. I decided to try for a transplant. My health was good and my daughter was told that she was giving me an A1 kidney. Today I am so happy that I did it when I did, while my health was still good, except for arthritis. My recovery was so much better than it would have been, had I waited.

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@cmael

I had a preemptive transplant 3 years ago. My creatinine was over 2 and gfr was 13. Luckily, my daughter was a match. I was not on dialysis, but had a meeting with a representative to look at the types of home dialysis. I decided to try for a transplant. My health was good and my daughter was told that she was giving me an A1 kidney. Today I am so happy that I did it when I did, while my health was still good, except for arthritis. My recovery was so much better than it would have been, had I waited.

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What a blessing and loving gift from your daughter! After speaking with my pre- transplant team and surgeon, I can now understand how my recovery from the surgery itself, transplant success, and my longevity will all be better if I'm lucky enough to receive a kidney while I still feel as strong as I do. I'm working through letting potential donors make their offer (even if I worry for them and what I perceive as their best interests), my last hurdle I think will be getting comfortable with a transplant induced compromise of my immunity strength in a world so impacted as it is with this pandemic. Any words of comfort or encouragement regarding that would be most appreciated! Wanting to be able to use my expected enhanced energy in more (safe) social settings!

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@katyrae

What a blessing and loving gift from your daughter! After speaking with my pre- transplant team and surgeon, I can now understand how my recovery from the surgery itself, transplant success, and my longevity will all be better if I'm lucky enough to receive a kidney while I still feel as strong as I do. I'm working through letting potential donors make their offer (even if I worry for them and what I perceive as their best interests), my last hurdle I think will be getting comfortable with a transplant induced compromise of my immunity strength in a world so impacted as it is with this pandemic. Any words of comfort or encouragement regarding that would be most appreciated! Wanting to be able to use my expected enhanced energy in more (safe) social settings!

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I can tell you that you should let the donor make the decision. During the pretesting the donor will be given many opportunities to be sure about their decision. My husband and I could not go to any of my daughter’s appointments because they wanted to make sure that it was what she wanted, without any outside influences. Now is the time to concentrate on taking the best care of you. Yes, having a compromised immune system does make life more tricky, but you will attend classes that will help you learn how to live well, in spite of it. This pandemic can’t go on forever.

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Amen to that! Thank you for your kind encouragement. 🙏🏼 ❤❤🤗

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@katyrae
I want to add my Welcome to Mayo Connect. I am happy that you have already net @cmael, who has been able to share first hand information from her own experience. Sharing with each other, and supporting each other is what we do on Connect. Everyone is welcome.
My donor (liver and kidney) was a deceased donor, so my experience is different from yours. I got my transplant in 2009 at Mayo MN and I will assure you that life with an organ transplant is better that normal every day for me.

Have you seen the Mayo Living Donor Toolkit? It presents excellent information about living donation that covers the entire donor process beginning with how to get started, the process, the evaluation as well financial information and peer support for the prospective
https://connect.mayoclinic.org/blog/transplant/tab/resource-36/
Here is an interview with @mauraarco, about her kidney donation experience.
From Mayo Connect Blogs>About Connect: Who, What & Why >From the Kidney Donor's Perspective: Meet @mauraacro
https://connect.mayoclinic.org/blog/about-connect/newsfeed-post/from-the-kidney-donors-perspective-meet-mauraacro/

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@katyrae83 from the donor side of things, I can say that after a viable candidate is found, there are a million appointments (most of mine were over 3 day period at Mayo) all in the interest of the donor. They went over everything including medical, financial and psychological testing. They wanted to make sure I was aware of every possibility before, during and after donation. I have never felt more taken care of.

At any point, I could have decided not to donate for any reason right up until the time of surgery. @cmael is correct in saying to let the donor decide and I'd encourage any potential donor to check out this site to find out more about it from a non medical point of view.

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@katyrae

What a blessing and loving gift from your daughter! After speaking with my pre- transplant team and surgeon, I can now understand how my recovery from the surgery itself, transplant success, and my longevity will all be better if I'm lucky enough to receive a kidney while I still feel as strong as I do. I'm working through letting potential donors make their offer (even if I worry for them and what I perceive as their best interests), my last hurdle I think will be getting comfortable with a transplant induced compromise of my immunity strength in a world so impacted as it is with this pandemic. Any words of comfort or encouragement regarding that would be most appreciated! Wanting to be able to use my expected enhanced energy in more (safe) social settings!

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@katyrae A pre-emptive kidney transplant is usually handled better by your body when it has better resources to recover, if you can get a living donor like you are aiming for. Kidney disease is so danged sneaky, and even though you are feeling fine, it quietly brings you and your defenses down. Once you have your transplant, we'll have to tie you down, you'll feel so good!

As others have said, there are so many things to consider as you journey to your transplant. I surely do hope your potential donors are able to get through the testing, resulting in a great match for you. If it doesn't happen, once you are below 20% you can be listed for transplant, and start that clock ticking. For me, I am an active cancer patient, so transplant is out of the question. And, if you donor is not compatible with you, there is also the opportunity for a paired donation, where they donate to someone, and you get a kidney too https://www.mayoclinic.org/departments-centers/paired-donation/overview/ovc-20508454

I'll be looking for your story!
Ginger

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@rosemarya

@katyrae
I want to add my Welcome to Mayo Connect. I am happy that you have already net @cmael, who has been able to share first hand information from her own experience. Sharing with each other, and supporting each other is what we do on Connect. Everyone is welcome.
My donor (liver and kidney) was a deceased donor, so my experience is different from yours. I got my transplant in 2009 at Mayo MN and I will assure you that life with an organ transplant is better that normal every day for me.

Have you seen the Mayo Living Donor Toolkit? It presents excellent information about living donation that covers the entire donor process beginning with how to get started, the process, the evaluation as well financial information and peer support for the prospective
https://connect.mayoclinic.org/blog/transplant/tab/resource-36/
Here is an interview with @mauraarco, about her kidney donation experience.
From Mayo Connect Blogs>About Connect: Who, What & Why >From the Kidney Donor's Perspective: Meet @mauraacro
https://connect.mayoclinic.org/blog/about-connect/newsfeed-post/from-the-kidney-donors-perspective-meet-mauraacro/

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Thank you Rosemary 🙂 it is encouraging to think about feeling better after a transplant, even if getting out and getting social may still be challenging. Honestly, there's a lot I could be doing right here in my lovely little home! And yes, I am familiar with the wonderful information Mayo has available online. I've learned so much just reading through that!  Mayo continues to heal, care, support, and inform in person and across many platforms. I'm am forever grateful to Mayo, they already saved my life providing a (blood disorder) diagnosis and treatment that my local hospitals missed.
Thank you for sharing the video from @mauraarco from the donor's perspective. She is inspiring!
And so are you, what a blessing you received, and what a blessing you are to give back by encouraging and supporting me and others facing the need for a transplant. Hugs 🤗

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