New Transplant Blog Posts

Hello everyone,
We hope this finds everyone well today! We have started this discussion today to announce a new blog post. Every week, we will reply to this discussion to let you know when something new is published. Watch for new information often!

Have a productive and enjoyable week!
– Kristin

@gaylea1

@contentandwell My diagnosis came with the bad HE episode in Nov 2016. I had to wait 6 months to be placed on a waiting list. That was done June 2017. My MELD was only 25 then. Now just above 30.
I had the opposite experience with my hospital experiences. The nurses were awesome and the PWs were gentle and caring.
I take lactulose (does everyone hate that stuff…yuk) and xifaxin. Definitely helping. No more lactuose will be welcomed with open arms. For my stomach I take domperidone, lansazporole and Zantac. For edema furosemide and spironolactone. Trazodone for sleep. A real chemical cocktail daily.
Thanks so much for sharing with me.

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@gaylea1 Ahh, I was confused because you said the HE episode was in November 2017 – a typo.
My hospital experiences in my transplant center were great, it was my local hospital that really was not, and I have heard other people not be happy with that hospital also. There are two local hospitals and my husband's doctor is at the other one so should he ever have to go in he will go to that one, I will go to Boston to my transplant hospital.
I was given something for my stomach but it really didn't help much and it totally knocked me out for a full day! I never had problems like that before but when your liver is not functioning well it does effect medications. I was more miserable with the nausea medication than I was without it.
Near the end, I was also taking furosemide and spironolactone. They helped some but then, as I am sure I have mentioned, I gained 35 pounds of fluid and nothing helped — or maybe it did and without it I would have gained even more. It was horrible.
It's a blur to me a bit, which is why I wish I had kept a journal, but I don't think I waited that long at all to get on a waiting list. When I was listed my MELD was 18.
Please do keep us informed, it's always so wonderful to hear of some one we "know" who has also come through this miserable journey and is on the other side finally.
JK

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@japv2001

I am 64,my meld score is 8, Drs.found a “lesion”concern to hepatocelular carcinoma measuring 3 cm.They recommended a liver transplant but first,a procedure to kill the cancer.My question is:Is more risky to kill the cancer and refuse a transplant than do the two things?.

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@japv2001 I had malignant lesions also, and they were ablated before I had my transplant. From what I know, if the cancerous lesions increase beyond a certain size or number you are ineligible for a transplant so I would definitely have the lesion removed.
If you are up for a transplant I presume you probably have some form of cirrhosis, and if I understand it correctly there is no cure for cirrhosis beyond a transplant. Some people do manage to keep it at bay by following strict dietary guidelines but that does not work for everyone. I was very good about my diet but my cirrhosis did get worse and when they took it out and dissected it was almost spent so I was very fortunate to get a transplant when I did, which was sooner than anticipated.
JK

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@llwortman

Hi: Is there a lung transplant connection? I’m looking for an outreach with lung transplant patients and their advocates?
linda

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Are you looking for someone who has already received lung transplant?

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Happy Wednesday!
It's a rainy day around much of the country today. What a great time to sit inside and catch up on your reading. Today's blog post is the perfect place to start – a round-up of three posts that help you remember to care for yourself. We are often so busy caring for others that we forget about self-care. Learn more on the blog and stay dry today!
-Kristin

https://mayocl.in/2NTf2bO

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@keggebraaten

Happy Wednesday!
It's a rainy day around much of the country today. What a great time to sit inside and catch up on your reading. Today's blog post is the perfect place to start – a round-up of three posts that help you remember to care for yourself. We are often so busy caring for others that we forget about self-care. Learn more on the blog and stay dry today!
-Kristin

https://mayocl.in/2NTf2bO

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I am looking forward to reading this new blog today as my airport reading!
I can’t wait to hear (and learn) some more ideas from our members as the day progresses!

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Good morning!
In today's Meet the Expert blog post you get to meet someone who works primarily behind the scenes in a transplant center. Do you know the person who helped coordinator your deceased donor organ? At many centers that person is called the organ procurement coordinator. Learn more about Patti Weaver and her job function for Mayo Clinic in today's blog. Have a wonderful day everyone!
-Kristin
https://connect.mayoclinic.org/page/transplant/newsfeed/meet-the-expert-patti-weaver-r-n-transplant-procurement-coordinator/

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Happy Fall everyone!
The trees here in Minnesota are beautiful, but the temps could be a bit warmer. I hope everyone is enjoying the fresh apples and cider this week!

Today's blog post is for anyone who has had experience with NASH – nonalcoholic steatohepatitis. We have a great archive of content on our blog after two years of work, and we will offer you some round-ups of that content periodically. This post will give you three helpful articles about NASH to share with your followers. https://connect.mayoclinic.org/page/transplant/newsfeed/nash-patients-blog-round-up/

Have a wonderful week!
Kristin

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@keggebraaten

Happy Fall everyone!
The trees here in Minnesota are beautiful, but the temps could be a bit warmer. I hope everyone is enjoying the fresh apples and cider this week!

Today's blog post is for anyone who has had experience with NASH – nonalcoholic steatohepatitis. We have a great archive of content on our blog after two years of work, and we will offer you some round-ups of that content periodically. This post will give you three helpful articles about NASH to share with your followers. https://connect.mayoclinic.org/page/transplant/newsfeed/nash-patients-blog-round-up/

Have a wonderful week!
Kristin

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Transplant members,

Make a note to yourself to check out this New Transplant Blog Post site regularly!
and
Thank-you to the transplant staff for providing us with up-to-date and accurate information! You are the Best!!

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Good morning everyone!
Today's blog post might be helpful to anyone who is waiting for kidney transplant. Do you fully understand the differences between having a family member give you a kidney and getting a kidney from a stranger? Are there any major differences in the surgery or procedure? Today with the help of our Enterprise Kidney Paired Donor Coordinator, we posted a blog to answer these and other questions about nondirect kidney donation. Feel free to share this information with anyone you think might find it useful.
https://mayocl.in/2DBpwrx
Thanks!
Kristin

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Hi everyone!
Happy Thanksgiving! I hope you all survived the meal and family/friends for the weekend. It was cold here in Minnesota, but not too cold for some Black Friday good deals!
Today's blog post is another post about living donor surgery. If you are considering being a donor or someone in your circle is considering donation to you, there is never such a thing as having too much information. So we keep publishing blogs, hoping that everyone who is considering donation has the most information they can handle before they undergo surgery.
We want to sincerely thank Dr. Jadlowiec from our Arizona kidney team for providing us with today's great information.
Have a wonderful week!
-Kristin
https://connect.mayoclinic.org/page/transplant/newsfeed/living-kidney-donation-surgery-play-by-play/

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Good morning!
If you've been called in for transplant or have started your evaluation process, you likely know that the costs and convenience of lodging during this time is not always great. Hotels can be costly and let's face it, they aren't always clean enough for even the least picky guest, so they certainly aren't the best for a immune compromised patient. That's why Mayo Clinic, and other transplant centers, have made the choice to partner with hospitality houses, so that patients can have an easier – and cheaper- experience with lodging choices. Read more about our transplant house partners in the attached blog and share this info with anyone who might need a place to stay during their transplant process.
Have a wonderful week!
Kristin
https://connect.mayoclinic.org/page/transplant/newsfeed/transplant-hospitality-houses-a-home-away-from-home/

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Help lol

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@anthonyssad

@anthinyssad, I would like to extend a virtual handshake to welcome you to Mayo Connect. Connect is a place where you can share your experiences and find support from people like you. It is also a place to ask questions and learn with others.

As a volunteer mentor, I am here to help you to connect with others who share similar concerns. I need for you to provide me with some information about yourself so that I can better assist you.

Are you a patient, or caregiver, or a donor? What kind of help are you looking for?

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@anthonyssad

@anthonyssad Welcome to Connect. We are here to help, what can we help you with? More than likely other Connect participants have had some experience that can help you.
JK

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@keggebraaten

Good morning!
If you've been called in for transplant or have started your evaluation process, you likely know that the costs and convenience of lodging during this time is not always great. Hotels can be costly and let's face it, they aren't always clean enough for even the least picky guest, so they certainly aren't the best for a immune compromised patient. That's why Mayo Clinic, and other transplant centers, have made the choice to partner with hospitality houses, so that patients can have an easier – and cheaper- experience with lodging choices. Read more about our transplant house partners in the attached blog and share this info with anyone who might need a place to stay during their transplant process.
Have a wonderful week!
Kristin
https://connect.mayoclinic.org/page/transplant/newsfeed/transplant-hospitality-houses-a-home-away-from-home/

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Make sure you are comfortable with the house rules before making a decision.

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