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KY

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Posts (3157)

1 day ago · Living Donor Kidney surgery next Tuesday: Any advice? in Transplants

@earlenes, Welcome to Mayo Connect. Yours is the first message that I saw when I logged in today. As an organ transplant recipient, I echo your 'Wow' . I can assure you that you are not alone in your nervousness and emotions – this is a life saving changing moment for everyone involved in the paired exchange. Earlenes, I did not have a living donor, and so, I want to connect you with others who are living donors, or who are in the process of being living donors.
Here is a discussion where you will be able to meet and talk to other donors. This discussionn was started by a living kidney donor, @mauraacro – Kidney transplant – The Journey from the Donor's Side.

https://connect.mayoclinic.org/discussion/kidney-transplant-from-the-donor-side/

@cleverusername, also a living kidney donor has shared about post donor life here. From a Living Donor: One year later, what is your life like now? https://connect.mayoclinic.org/discussion/a-post-donation-check-in-one-year-later/

@earlenes, I am excited for you and your donor!

1 day ago · From a Living Donor: One year later, what is your life like now? in Transplants

@cehunt57, I hope that you will hear some good news in the near future from a potential living donor or from the transplant dept about a kidney for you. I think that no one knows what the waiting is like, unless they have experienced it themself or in a loved one. I also like to believe that as more and more people learn about the healthy post-transplant-donor-life of people like @cleverusername, that they will become more interested in considering themselves as a living donor. Cehunt, thank you for your reply and thank you for sharing your patient experience.
I am happy to hear from you. I hope along with you, and I continue to hold you in my prayer and my thoughts.

2 days ago · This and That and Talk - My Transplant in Transplants

A new member spotlight features one of our fellow Connect members – @mauraacro. You can read her interview to learn more about Maura and what inspired her to donate a kidney to a stranger.
– From the Kidney Donor's Perspective: Meet @mauraacro https://connect.mayoclinic.org/page/about-connect/newsfeed-post/from-the-kidney-donors-perspective-meet-mauraacro/

I encourage you to read her interview, and to give a shout out – by sending a like or a comment – so that the world will know that we believe in organ transplant! I look forward to joining you there.
and-
Did you know that last year there was a record number living donor transplants? According to UNOS there were almost 7400!

2 days ago · From a Living Donor: One year later, what is your life like now? in Transplants

@cleverusername, I am delighted to see your donor-to-donor discussion! I cannot think of a better way for donors and potential donors to learn and share firsthand experiences about life after the donation. Did you know that in the recent UNOS annual report, there were nearly 7400 living donor transplants in 2019? A record number!
I have no experience to share since I did not have a living donor. To get started, I want to tag some members who have experience with living organ donation. @threerrr3, @cmael, @taarthi, @jolinda, @rebekahinvt, @cehunt57, @triciaodonnell, @charicen, @ghayden777, @sameeh123, @jgiovann.

3 days ago · From the Kidney Donor's Perspective: Meet @mauraacro in About Connect: Who, What & Why

@mauraacro, Thank you for allowing me to interview you. It has been a privledge to get to know you better, as you have so generously shared you living kidney donor experience.

3 days ago · From the Kidney Donor's Perspective: Meet @mauraacro in About Connect: Who, What & Why

Member Spotlights feature interviews with fellow Connect members. Learn more about members you’ve connected with and some you haven’t met yet. Nominate a member you think should share the spotlight.

@mauraacro: I was scrolling through Twitter in October 2017 and saw a post that said, “I’m looking for a kidney for my mom. She has been on dialysis for almost 5 years.” I don’t know what struck me about that particular post, but I immediately thought, “I can do that.” 

I followed the link to the Mayo Clinic page for indicating interest in living donation and filled out the online health history questionnaire. A nurse called me shortly afterward, and the process of testing and evaluation followed fairly quickly.

Less than a month before I was scheduled for donation, I was worried about what surgery and aftercare would be like from a non-medical perspective. I searched for kidney donation online but didn’t find much information about living kidney donors beyond how to donate and the technical process. I saw that Mayo Clinic Connect had very active groups but didn’t find many living donor discussions at the time. I posted anyway, hoping that someone could steer me to the right place. The members were very generous with their support and information from day one.

I’m still not sure why, from a stranger’s post on social media at that exact time in my life, what made me decide to donate. I am so glad to be a part of this, however, and want to be able to help and encourage donors or potential donors no matter where they are in the process, no matter the results of their evaluation.

ROSEMARY: What about Connect makes you feel comfortable to share and to be open with the community?

@mauraacro: In the beginning I liked being online and somewhat anonymous. I was going into surgery to have an organ removed and put into another person, and my main concern was about how much it would hurt and what kind of leggings would be most comfortable afterward!

My social worker, nurses, doctors and my family were all very supportive, but I didn’t want them to feel like I was having second thoughts about donating. I certainly didn’t want them to know I was worried about winter outfits. I loved that I could connect online with real people who had been through the same thing.

Now that I know some of the people on Connect, I like the genuine care and empathy they show to others. I like that both trivial and serious questions are answered and treated with respect, and I like that if someone doesn’t have an answer, someone else will know where to find information.

ROSEMARY: What groups do you participate in?

@mauraacro: I participate in the Transplants group. 

ROSEMARY: Tell us about a meaningful moment on Connect. 

@mauraacro: I learned from recipients and prospective recipients on Connect about the waiting list and the importance of organ donation. I already knew there are thousands waiting for an organ transplant, but I didn’t know what waiting was like in the day-to-day life of a patient.

It was hard to tell people I donated an organ, for fear it appeared I was looking for accolades. Now that I know what waiting does to the lives of patients and their families, it’s much easier to tell people about it.

I didn’t find Connect until after my full evaluation at Mayo Clinic, but I have used it almost as a journal for myself and others, writing about my whole journey from beginning to end in the Transplants group. I have replied to people on Connect who went on to successfully donate to another person, and those who have made it through the evaluation and are waiting for results. Getting the word out about donation makes me feel like a hero!

ROSEMARY: What surprised you the most about Connect?

@mauraacro: I was surprised how easily and immediately I was welcomed. 

ROSEMARY: What energizes you, or how do you find balance in your life?

@mauraacro: I am energized by genuinely positive people. And a lot of coffee. My life often feels like a balancing act rather than being balanced, but my home and family are my base and where I find the most comfort.  

ROSEMARY: Tell us about your favorite pastime or activity.

@mauraacro: I love getting together with friends and extended family; I’m grateful that some of them are both. We meet at each other’s houses for appetizers and go on long walks to offset the snacks we eat. We love to go to ’80s dance nights. Having one kidney has not slowed me down.

I didn’t meet my kidney recipient until the day before surgery, but we now consider each other family. Since surgery, we have met in Mexico for her daughter’s wedding and in Arizona and Las Vegas for fun. We will be going to Wisconsin for her other daughter’s wedding and hope to meet up in Ghana for their family reunion. It’s amazing how much bigger my life has gotten: I feel like I have gained more than I gave.

ROSEMARY: Do you have a favorite quote, life motto or personal mantra?

@mauraacro: My mantra is, “I can do that.”

ROSEMARY: What do you appreciate the most in your friends?

@mauraacro: That they support me 100%, make me laugh until I cry and tell me when I’m wrong.

ROSEMARY: Puppies or kittens?   

@mauraacro: Puppies!!! 

See more Member Spotlights.

3 days ago · What about cruising post liver transplant? in Transplants

I hope that it is a good morning for you, wherever you are. Are you logging if from home of traveling?

I am at home in central Kentucky and my husband and I are beginning to plan our trip to Olympic National Park and Mt Ranier National Park in the late summer. I am looking forward to the outdoors and the hiking, but not the flight to get there! I feel comfortable, though, because I have managed to fly without picking up any germy issues in the past. My handsanitizer and my own water and snacks are my constant companions all the time-on the trail, in the plane, on the road. And, to add a new meaning to what my 6 yr old granddaughter is learning in school: "Keep your hands to yourself". I think that is a handy helpful travel tip!

Who else has some interesting travel plans for this new year? Maybe you were gifted a surprise trip during the holidays? Maybe you have already planned something? Maybe you are a seasoned traveler who has a transplant – or a new transplant recipient who wants to travel ? Pull up a chair, pour cup pf tea, coffee and lets talk about good times ahead!
I invite @silverwoman, @luckonetj, @jolinda, @gingerw, @scottb32, @contentandwell, @gingerw, to begin-because you are already experts !

3 days ago · Transplant List Process Time in Transplants

@tomkrush, I am sending a virtual, "Thinking of you" greeting. In our most recent communication here, you were beginning a possible dialysis treatment and kidney transplant possibility. I realize from my own experience that those are both frightening situations. How are you doing with all of this?