This and That and Talk - My Transplant

Posted by Rosemary, Volunteer Mentor @rosemarya, Apr 9, 2017

As our Mayo Connect community grows, I am constantly meeting organ transplant members on a wide variety of forums with a wide range of issues that are not directly transplant specific. However, because we are all transplant recipients, we have a special connection: a unique journey and best of all - a new life! We don't always need help or advice. Many times we just want to chat with someone like us! That is my purpose in starting This and That and Talk.

Drop in and say 'Hi'. You are welcome anytime.

What do you want t to talk about? What words can you offer to someone who is on the journey? Do you have any questions for another recipient?

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

@kequick

Hi @mauraacro! I’m so glad you found our group – I’m another one of the moderators here and wanted to extend a virtual handshake and tell you it’s so nice to meet you.

Thank you for sharing that you will be donating a kidney next month. As Rosemary said, you are a "living hero", and I can understand why you would be feeling both excited and nervous! I’m sure your care team has done a fabulous job thoroughly preparing you for this journey, here's another resource you may find helpful:
https://connect.mayoclinic.org/page/transplant/tab/resource-36/
I thought some patient stories might also give you a little boost of confidence 🙂
https://sharing.mayoclinic.org/2015/08/13/marathoner-and-ironman-michael-koetting-back-in-the-race-after-donating-kidney
https://sharing.mayoclinic.org/2017/01/05/you-never-think-about-a-living-donor-until-someone-you-love-needs-one
https://sharing.mayoclinic.org/2015/04/21/living-kidney-donations-save-two-lives-in-the-same-family-years-apart
https://sharing.mayoclinic.org/2015/09/16/new-kidney-from-sister-gives-hurdler-a-chance-at-2016-olympics
https://sharing.mayoclinic.org/2016/10/19/living-donor-to-kidney-recipient-i-feel-like-the-winner-in-all-this
Would you be willing to share what inspired you to be a living donor?

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@mauraacro, I just remembered that I wore something soft against my surgical area. That prevented irritation from any rubbing.
Rosemary
I also would like for you to meet @fauneconner. She is also soon to be a living kidney donor.

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@mauraacro

Hi, I'm brand new here and technologically challenged so feel free to point me in the right direction if I've posted in the wrong place or if there is a better place for me to learn about my upcoming surgery.
I will be donating a kidney January 12th. I'm excited and nervous. Is there someone here that has donated or knows someone who has? I know what Mayo has told me to expect but was hoping to hear from a real person. Thank you!

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@rosemaya, thank you and yeah this year I am a little worried as I'm due to have my right heart catheterization and angiogram and am a little worried as have not been doing my greatest this year have had 3 rounds of amtibiotics and 2 rounds of prednisone due to uti's which I never ever had in my life until this year and due to my asthma being so bad I don't normally worry about the angiogramor the right heart catheterization but with taking the preds it has a tendency of drop my natural cortisone levels way below normal and i have a tendency to get sick even more then with kust having a suppressed immune system and i also REMEMBER having having to use a wheelchair before and after my transplant but I never give up on myself and never will at anytime so even though I am worried I do know in my heart that everything will be fine with my yearly I just happen to be a worrier simetimes but am always an optimist also will keep you posted on how things go at my yearly
Glinda

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@kequick

Hi @mauraacro! I’m so glad you found our group – I’m another one of the moderators here and wanted to extend a virtual handshake and tell you it’s so nice to meet you.

Thank you for sharing that you will be donating a kidney next month. As Rosemary said, you are a "living hero", and I can understand why you would be feeling both excited and nervous! I’m sure your care team has done a fabulous job thoroughly preparing you for this journey, here's another resource you may find helpful:
https://connect.mayoclinic.org/page/transplant/tab/resource-36/
I thought some patient stories might also give you a little boost of confidence 🙂
https://sharing.mayoclinic.org/2015/08/13/marathoner-and-ironman-michael-koetting-back-in-the-race-after-donating-kidney
https://sharing.mayoclinic.org/2017/01/05/you-never-think-about-a-living-donor-until-someone-you-love-needs-one
https://sharing.mayoclinic.org/2015/04/21/living-kidney-donations-save-two-lives-in-the-same-family-years-apart
https://sharing.mayoclinic.org/2015/09/16/new-kidney-from-sister-gives-hurdler-a-chance-at-2016-olympics
https://sharing.mayoclinic.org/2016/10/19/living-donor-to-kidney-recipient-i-feel-like-the-winner-in-all-this
Would you be willing to share what inspired you to be a living donor?

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Thank you for sharing! A journal is a great idea, it may help me to explain to others why I think being a living donor is so important (besides the obvious). and while parts of it have been inconvenient for me, it's so inconsequential in the big picture. The benefits to me and my family far outweigh any discomfort I've had or will have. We have learned so much about my medical history, about how to remain healthy or do even better. We've talked about our futures and our goals. We've learned about how we can help others and how to ask for help. We are a close family but like most people we get too busy to really talk, this has brought us closer together.

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@hopeful33250

@contentandwell I'm sure you will feel somewhat better with your daily schedule back to normal. I missed your posts.

Teresa

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@hopeful33250 Thanks, Teresa.
JK

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@mauraacro

Hi, I'm brand new here and technologically challenged so feel free to point me in the right direction if I've posted in the wrong place or if there is a better place for me to learn about my upcoming surgery.
I will be donating a kidney January 12th. I'm excited and nervous. Is there someone here that has donated or knows someone who has? I know what Mayo has told me to expect but was hoping to hear from a real person. Thank you!

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@glinda, I want to check in with you before you begin to pack and get busy with your week. I know what you mean about worrying, I do too before my routine annual evaluation. And I worry even more on those 'special event' years. I am always so-o-o relieved when I get that final, "See you next year" from the transplant dept!

I'll be thinking of you, and I'll say a prayer for your safe travel and good results. However, I will still be sound asleep when you have to get those predawn labs drawn!

Unplug! Take yourself offline, and get some rest between your appointments. We will look forward to hearing from you when you get back home:-)
Hugs,
Rosemary

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@mauraacro

Hi, I'm brand new here and technologically challenged so feel free to point me in the right direction if I've posted in the wrong place or if there is a better place for me to learn about my upcoming surgery.
I will be donating a kidney January 12th. I'm excited and nervous. Is there someone here that has donated or knows someone who has? I know what Mayo has told me to expect but was hoping to hear from a real person. Thank you!

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Thanks rosemay

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@kequick

Hi @mauraacro! I’m so glad you found our group – I’m another one of the moderators here and wanted to extend a virtual handshake and tell you it’s so nice to meet you.

Thank you for sharing that you will be donating a kidney next month. As Rosemary said, you are a "living hero", and I can understand why you would be feeling both excited and nervous! I’m sure your care team has done a fabulous job thoroughly preparing you for this journey, here's another resource you may find helpful:
https://connect.mayoclinic.org/page/transplant/tab/resource-36/
I thought some patient stories might also give you a little boost of confidence 🙂
https://sharing.mayoclinic.org/2015/08/13/marathoner-and-ironman-michael-koetting-back-in-the-race-after-donating-kidney
https://sharing.mayoclinic.org/2017/01/05/you-never-think-about-a-living-donor-until-someone-you-love-needs-one
https://sharing.mayoclinic.org/2015/04/21/living-kidney-donations-save-two-lives-in-the-same-family-years-apart
https://sharing.mayoclinic.org/2015/09/16/new-kidney-from-sister-gives-hurdler-a-chance-at-2016-olympics
https://sharing.mayoclinic.org/2016/10/19/living-donor-to-kidney-recipient-i-feel-like-the-winner-in-all-this
Would you be willing to share what inspired you to be a living donor?

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Hi @mauraacro, I encourage you to share your journey as a living donor here on Connect. I might suggest starting a new discussion dedicated to the topic. Learning through your experience will be a huge help to future donors, and will invite other donors to share their stories. As you said, the health care professionals tell you the stuff they feel you "need to know" which largely focuses on the medical necessities. But there is so much more that people "want to know" -- the practical stuff, the experiential stuff that you just don't learn about from pamphlets etc.

Here’s how to start a new discussion:
1. Go to the Transplants group homepage here: https://connect.mayoclinic.org/group/transplants/
2. Click the START A DISCUSSION button.
3. Enter a title.
4. Write your message.
5. Click CREATE DISCUSSION

I look forward to hearing more about your journey.

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@rosemarya

@lcamino, I hope that you have been enjoying a restful Holiday Season! I want to wish you a Happy, Healthful, and Hopeful 2018!

The year 2017 has been full of many friendly and supportive conversations on this forum. I want to personally thank you for your participation. I hope that 2018 will provide us with more opportunities for meeting and sharing:-)

I would like to also point out that there has been increased activity in this discussion and in Living Donor Discussion that might be of particular interest to you.

Hugs, and Hope, and Happiness for 2018!
Rosemary

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@rosemarya - I tried to direct message you but your name did not come up and when I typed it in it said there was no one as @rosemarya. Maybe you can direct message me and I can respond.

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@mauraacro

Hi, I'm brand new here and technologically challenged so feel free to point me in the right direction if I've posted in the wrong place or if there is a better place for me to learn about my upcoming surgery.
I will be donating a kidney January 12th. I'm excited and nervous. Is there someone here that has donated or knows someone who has? I know what Mayo has told me to expect but was hoping to hear from a real person. Thank you!

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@rosemarya hi,rosemary ,
Just wanted to update you I just returned home last night agter 3 days at mayo in rochester and again I have passed all my tests with flying colors my angiogram and my eight heart catheterization came back no change all good and stable, them same for my echo and ekg, and for the first time in a long time that i can remember my liver enzymes have come backk down to normal so my doctors have given me another clean bill of health and cleared me for another year so i must be doing something right heart. Sometimes i feel like such a fraud for going to rochester to see my team each year and get the same rests but I know that I have to and my doctors are always glad to see me and are always excited by how well I am doing each and every year they always tell me to keep up whatever I am doing as it is working I just ealk all the time take my meds the way I'm supposed to and stick to my low fat no salt which is okay as I can't stand the taste of salt anyway diet and i also do a low carb diet with the no salt low fat so another good year for me from my doctors yay

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@mauraacro

Hi, I'm brand new here and technologically challenged so feel free to point me in the right direction if I've posted in the wrong place or if there is a better place for me to learn about my upcoming surgery.
I will be donating a kidney January 12th. I'm excited and nervous. Is there someone here that has donated or knows someone who has? I know what Mayo has told me to expect but was hoping to hear from a real person. Thank you!

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@glinda,, HOORAY! I am on way out, will get back to you later:-) Rosemary

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