1. < Transplants

Post kidney transplant

Posted by lori120ann @lori120ann, Feb 26, 2018

Has anyone had a kidney transplant at mayo? Was it a good experience. I've heard it is the best place to go. How long did it take for you to get in to see them.

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

lori120ann | @lori120ann | Feb 28, 2018
In reply to @jodeej "@lori120ann my husband is currently on the liver transplant list with Mayo in Rochester. We have..." + (show)
@jodeej

@lori120ann my husband is currently on the liver transplant list with Mayo in Rochester. We have been treated with nothing but kindness and respect by everyone when we have been there for appointments. It only took 18 days from when I requested his appointment to when it was scheduled. I was really surprised that he got in that quickly and by the fact that I could just go online and ask for an appointment!

Best of luck,
JoDee

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Thank you so much Jodee. I will be going to the Scottsdale clinic. I'm anxious to hear from them but they are still doing insurance approval. Your hubby got in really quick.

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Mentor
Rosemary, Volunteer Mentor | @rosemarya | Mar 1, 2018
In reply to @jodeej "@lori120ann my husband is currently on the liver transplant list with Mayo in Rochester. We have..." + (show)
@jodeej

@lori120ann my husband is currently on the liver transplant list with Mayo in Rochester. We have been treated with nothing but kindness and respect by everyone when we have been there for appointments. It only took 18 days from when I requested his appointment to when it was scheduled. I was really surprised that he got in that quickly and by the fact that I could just go online and ask for an appointment!

Best of luck,
JoDee

Jump to this post

@lori120ann,
If you want to direct your message to a particular person, you can copy/paste the @name to your message like I did yours. Now they will receive a notification.
Rosemary

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jodeej | @jodeej | Mar 2, 2018
In reply to @jodeej "@lori120ann my husband is currently on the liver transplant list with Mayo in Rochester. We have..." + (show)
@jodeej

@lori120ann my husband is currently on the liver transplant list with Mayo in Rochester. We have been treated with nothing but kindness and respect by everyone when we have been there for appointments. It only took 18 days from when I requested his appointment to when it was scheduled. I was really surprised that he got in that quickly and by the fact that I could just go online and ask for an appointment!

Best of luck,
JoDee

Jump to this post

@lori120ann he really did get in quick! I was thinking I'd have to have his doctor that he had been seeing put in an urgent request for him. All of our appointments have been easy to get scheduled, thankfully!
I hope all goes well for you!

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Mentor
Rosemary, Volunteer Mentor | @rosemarya | Apr 9, 2018

@lori120ann, How are you doing? I was wondering if you have a scheduled appointment yet?
Hugs and Hope,
Rosemary

PS - I am interested in hearing about Mayo AZ! I bet it is a beautiful campus!

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Mentor
Rosemary, Volunteer Mentor | @rosemarya | Apr 9, 2018
In reply to @tmiller999 "I had one in March of 2015! Greatest place you could possibly go! Let me know..." + (show)
@tmiller999

I had one in March of 2015! Greatest place you could possibly go! Let me know if you have any questions.

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@tmiller999, I am dropping in to say 'Hi' to your kidney, and to ask "How are you doing'?
Rosemary

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paragem | @paragem | Jul 10 9:04am

I had mine at Mayo Phoenix. I had been seeing a nephrologist at Mayo when my kidney started to give up fighting. At 20% he referred me for a transplant. It was nearly a year before I started the procedure. I was 66 at the time and had every test/procedure/interview known to man. Not sure if it was my age or if that is normal Mayo procedure. I did testing in Dec/Jan and got on the list in March. Out of the blue, I had a live donor (cousin) and did the transplant in July. In the hospital for two+ days (transplant Tues. am and discharged Thurs. noon. Lots of meds and appts at first and I stayed out of work for 6 weeks. Then lots more appts. Once a week labs and the occasional office visit for maybe 6 months or so. Then down to once a month labs. I’m 2 years post and still going once a month for labs. Maybe because I actually live near the Scottsdale clinic. From Dec pre-transplant to Dec post-transplant, I had 147 separate appts (that includes the transplant surgery which I only counted as one). No complications, great team, very easy to contact anyone on the team through the patient portal. Excellent care all the way. I’m grateful I had the chance to use Mayo. Over 2 years, I’ve probably paid about $1000 total for random things. Otherwise private insurance paid it all, including my donor’s testing and surgery at Mayo. He lives in CA, so his insurance has paid the follow up care (which has been minimal). I hope this helps. If you have the chance to use Mayo, you should. World class medical professionals, techniques, and care.

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2 replies
Mentor
Ginger, Volunteer Mentor | @gingerw | Jul 10 10:32am
In reply to @paragem "I had mine at Mayo Phoenix. I had been seeing a nephrologist at Mayo when my..." + (show)
@paragem

I had mine at Mayo Phoenix. I had been seeing a nephrologist at Mayo when my kidney started to give up fighting. At 20% he referred me for a transplant. It was nearly a year before I started the procedure. I was 66 at the time and had every test/procedure/interview known to man. Not sure if it was my age or if that is normal Mayo procedure. I did testing in Dec/Jan and got on the list in March. Out of the blue, I had a live donor (cousin) and did the transplant in July. In the hospital for two+ days (transplant Tues. am and discharged Thurs. noon. Lots of meds and appts at first and I stayed out of work for 6 weeks. Then lots more appts. Once a week labs and the occasional office visit for maybe 6 months or so. Then down to once a month labs. I’m 2 years post and still going once a month for labs. Maybe because I actually live near the Scottsdale clinic. From Dec pre-transplant to Dec post-transplant, I had 147 separate appts (that includes the transplant surgery which I only counted as one). No complications, great team, very easy to contact anyone on the team through the patient portal. Excellent care all the way. I’m grateful I had the chance to use Mayo. Over 2 years, I’ve probably paid about $1000 total for random things. Otherwise private insurance paid it all, including my donor’s testing and surgery at Mayo. He lives in CA, so his insurance has paid the follow up care (which has been minimal). I hope this helps. If you have the chance to use Mayo, you should. World class medical professionals, techniques, and care.

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@paragem Welcome to Mayo Clinic Connect, and congratulations on your successful kidney transplant! Thank you for sharing as you have. Would you mind telling me what the underlying situation was for you, that caused your kidneys to fail?
Ginger

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1 reply
Mentor
Cheryl, Volunteer Mentor | @cehunt57 | Jul 10 11:38am
In reply to @paragem "I had mine at Mayo Phoenix. I had been seeing a nephrologist at Mayo when my..." + (show)
@paragem

I had mine at Mayo Phoenix. I had been seeing a nephrologist at Mayo when my kidney started to give up fighting. At 20% he referred me for a transplant. It was nearly a year before I started the procedure. I was 66 at the time and had every test/procedure/interview known to man. Not sure if it was my age or if that is normal Mayo procedure. I did testing in Dec/Jan and got on the list in March. Out of the blue, I had a live donor (cousin) and did the transplant in July. In the hospital for two+ days (transplant Tues. am and discharged Thurs. noon. Lots of meds and appts at first and I stayed out of work for 6 weeks. Then lots more appts. Once a week labs and the occasional office visit for maybe 6 months or so. Then down to once a month labs. I’m 2 years post and still going once a month for labs. Maybe because I actually live near the Scottsdale clinic. From Dec pre-transplant to Dec post-transplant, I had 147 separate appts (that includes the transplant surgery which I only counted as one). No complications, great team, very easy to contact anyone on the team through the patient portal. Excellent care all the way. I’m grateful I had the chance to use Mayo. Over 2 years, I’ve probably paid about $1000 total for random things. Otherwise private insurance paid it all, including my donor’s testing and surgery at Mayo. He lives in CA, so his insurance has paid the follow up care (which has been minimal). I hope this helps. If you have the chance to use Mayo, you should. World class medical professionals, techniques, and care.

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@paragem your story gives me hope. Congratulations on your kidney transplant and welcome to Mayo Clinic Connect. I have CKD stage 4 due to diabetes. I’ve been looking into this since 2016. I’ve been evaluated, approved and accepted for kidney transplant at Mayo in Rochester, MN. I’ve been looking for a living kidney donor since then. People who are willing have been excluded for one reason or another. Thank God my kidneys are still functioning somewhat. I have faith that if this meant to be, it will happen at the right time, in the right way that it is supposed to.

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1 reply
paragem | @paragem | Jul 10 11:57am
In reply to @cehunt57 "@paragem your story gives me hope. Congratulations on your kidney transplant and welcome to Mayo Clinic..." + (show)
@cehunt57

@paragem your story gives me hope. Congratulations on your kidney transplant and welcome to Mayo Clinic Connect. I have CKD stage 4 due to diabetes. I’ve been looking into this since 2016. I’ve been evaluated, approved and accepted for kidney transplant at Mayo in Rochester, MN. I’ve been looking for a living kidney donor since then. People who are willing have been excluded for one reason or another. Thank God my kidneys are still functioning somewhat. I have faith that if this meant to be, it will happen at the right time, in the right way that it is supposed to.

Jump to this post

Your positive attitude will get you there. Kidney disease and transplant are all about perseverance and persistence. I had one of the so-called “rare diseases” that came out of nowhere. Once I did some research, I began to understand that many symptoms in my childhood and young adult life pointed to this disease so I may have had an active disease since childhood. If that’s true, I had a good run - between 45 and 60 years depending on when it really started. My live donors came out of nowhere. One was a TA I had in college (over 45 years ago) whom I had connected with on LinkedIn. The other was a cousin whom I hadn’t seen in at least 3 decades. Keep spreading the word - high school, college reunion groups, work groups, neighbors, social media, everyone of your email contacts, ask local stores if you can put up a small poster. You never know what will pop up. Good luck to you! And hang in there!

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paragem | @paragem | Jul 10 2:59pm
In reply to @gingerw "@paragem Welcome to Mayo Clinic Connect, and congratulations on your successful kidney transplant! Thank you for..." + (show)
@gingerw

@paragem Welcome to Mayo Clinic Connect, and congratulations on your successful kidney transplant! Thank you for sharing as you have. Would you mind telling me what the underlying situation was for you, that caused your kidneys to fail?
Ginger

Jump to this post

Hi, Ginger,
I had IgA Nephropathy, a fairly non-aggressive case (at that’s what I think). No history of it in my family. Looking back, some symptoms from many years ago that were not well explained at the time have led me to believe I had this for many decades. A similar auto-immune mechanism also led to glaucoma and hearing loss but neither is serious at this time and I am under care for both. No signs of the IgAn returning after 2 years with a new kidney. So things are going well with me.

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