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

@IWantToBelieve

I have not posted for a long time but I have been following discussions when I have time. I just thought I'd let people know that I'm now on the transplant waitlist with a GFR of 19. I'm also actively seeking a living kidney donor as I have no family members that are able to donate because they have PKD (my genetic kidney disease) or they have already donated a kidney. I feel good but I'm very busy with family commitments and seeking a donor so I do not have time to stay active with Connect. I do want to thank all those on Connect for their support and all I learned from them. I do champion Connect on my website that I am using to find a kidney because I think Mayo and Connect is a great source of information and support. All the best!

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@IWantToBelieve I am not familiar with GFR but I presume it is similar to the MELD for liver function. What is the range of numbers for GFR and if you are waiting for a cadaver donor what number is generally where transplants occur?
JK

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New blog post alert! 🙂 This post, written by @lisalucier, introduces you to a Amanda Chaney, Doctor of Nursing Practice and liver transplant nurse practitioner at Mayo Clinic’s campus in Jacksonville, Florida. Learn about the role Amanda's mentor and "nursing mom" have played in her career, how she took inspiration from the popular TV show "Survivor" to improve new staff training, and what nickname she earned herself at work. Enjoy! https://connect.mayoclinic.org/newsfeed-post/meet-the-expert-blog-post-dr-amanda-chaney/

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New blog post by @keggebraaten is up! Check out this "countdown to living donor surgery" with key steps for living donors. https://connect.mayoclinic.org/newsfeed-post/countdown-to-living-donor-surgery-key-steps/

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Hello everyone!
Today's blog post is information for some of the most special people in a transplant patient's life – their caregivers. We know that caring for loved ones can be rewarding, but sometimes our caregivers also need extra support. Our hope is that this blog post gives you all a boost of energy and knowledge so caring for loved one can be the best experience for you.

Have a wonderful week!
Kristin

https://mayocl.in/2o3ttLL

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@keggebraaten

Hello everyone!
Today's blog post is information for some of the most special people in a transplant patient's life – their caregivers. We know that caring for loved ones can be rewarding, but sometimes our caregivers also need extra support. Our hope is that this blog post gives you all a boost of energy and knowledge so caring for loved one can be the best experience for you.

Have a wonderful week!
Kristin

https://mayocl.in/2o3ttLL

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This is the kind of information that my husband, my caregiver, would have appreciated during 'our' journey to transplant.

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@keggebraaten

Hello everyone!
Today's blog post is information for some of the most special people in a transplant patient's life – their caregivers. We know that caring for loved ones can be rewarding, but sometimes our caregivers also need extra support. Our hope is that this blog post gives you all a boost of energy and knowledge so caring for loved one can be the best experience for you.

Have a wonderful week!
Kristin

https://mayocl.in/2o3ttLL

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@rosemarya and all, I think any caregiver would be helped by this. Our caregivers most often give it their all, it's not easy for them either. When I was going through all of this, the biggest problem was the possibility each day that I might have an HE episode. Thankfully my daughter did come and stay with me a weekend so my husband could go to CA and visit our son for the weekend — they have a tradition of watching the Superbowl together.
I was talking to my son last night and all of this came up. We both agreed that I did very well dealing with everything except for the constant fear of having an HE episode. He also is amazed that my doctor did not diagnose me considering all the symptoms I had.
JK

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Hi everyone – We have a special post for you today on our blog – a Q&A with our wonderful member @contentandwell. If you've been part of our transplant discussion group for awhile, you've no doubt encountered @contentandwell. If you're new here, this is a great opportunity to hear contentandwell's story and learn about her transplant journey. It was an honor to write this post and get to know you a bit more, @contentandwell! Thank you for being a fabulous resource and trusted friend to so many in this group! https://connect.mayoclinic.org/page/transplant/newsfeed/member-qa-with-jk/

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@contentandwell I can't believe how similar our stories are. I have had my share of HE episodes but it was my first that had me catatonic. They were close to putting me on life support and my children feared for my life. That was Nov 2017. I was placed on the wait list June 2017. Although my MELD score is 30 I am still waiting. I suffer from insomnia, itching, edema, nausea etc etc. After reading your story I have gained some faith and comfort that it will work out in the end. I am working out and trying to stay fit. Thank you so much for the inspiration to not give up.

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@gaylea1

@contentandwell I can't believe how similar our stories are. I have had my share of HE episodes but it was my first that had me catatonic. They were close to putting me on life support and my children feared for my life. That was Nov 2017. I was placed on the wait list June 2017. Although my MELD score is 30 I am still waiting. I suffer from insomnia, itching, edema, nausea etc etc. After reading your story I have gained some faith and comfort that it will work out in the end. I am working out and trying to stay fit. Thank you so much for the inspiration to not give up.

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@gaylea1 HE episodes are the worst. For me, feeling like I was out of control of my mind was absolutely horrible. As I mentioned, my first was very minor. I always went to the local hospital for them, and they knew nothing there. If possible I would have gone to Boston, to my transplant center but the ambulance cost would have been prohibitive, and when I had one of the episodes that sent me to the hospital there is no way my husband could have driven me to Boston.
So you knew you had cirrhosis prior to your first HE episode. I didn't know I had cirrhosis until almost a year and a half later.
I am sure it will work out for you, and with a MELD of 30 probably pretty soon. May I ask what region you are in? I hope it's not one where the MELD scores tend to be much higher before a transplant. When I had mine, Boston was in the low 30s but currently it's at 28 which is exactly where I was.
I'm glad you are trying to stay fit, I am sure that is a huge help in your recovery. About a month after getting my new liver people were amazed at how well I looked. You will too.
JK

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@contentandwell

@gaylea1 HE episodes are the worst. For me, feeling like I was out of control of my mind was absolutely horrible. As I mentioned, my first was very minor. I always went to the local hospital for them, and they knew nothing there. If possible I would have gone to Boston, to my transplant center but the ambulance cost would have been prohibitive, and when I had one of the episodes that sent me to the hospital there is no way my husband could have driven me to Boston.
So you knew you had cirrhosis prior to your first HE episode. I didn't know I had cirrhosis until almost a year and a half later.
I am sure it will work out for you, and with a MELD of 30 probably pretty soon. May I ask what region you are in? I hope it's not one where the MELD scores tend to be much higher before a transplant. When I had mine, Boston was in the low 30s but currently it's at 28 which is exactly where I was.
I'm glad you are trying to stay fit, I am sure that is a huge help in your recovery. About a month after getting my new liver people were amazed at how well I looked. You will too.
JK

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@contentandwell Actually I did not have a diagnosis for cirrhosis until during that first bad HE episode. Looking back though I had several pretty bad episodes but didn't know why. I wouldn't go to the doctor or hospital. The last really bad one when I was finally diagnosed I fought my husband and he had to get my daughter over to convince me I needed urgent medical care. I don't remember the ambulance drive or the following 4 weeks.
I am not actually in a region I live in London Ontario which just happens to have one of the best transplant clinics in Canada. My score is borderline high for this area. Not quite critical but still pretty s8ck.
The fear of another HE episode keeps me on the straight and narrow.
I've been stuck at home the past 2 years as they suspended my drivers license. No buses my way and taxis are astronomical.
I can't wait to start my new life.

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@gaylea1

@contentandwell Actually I did not have a diagnosis for cirrhosis until during that first bad HE episode. Looking back though I had several pretty bad episodes but didn't know why. I wouldn't go to the doctor or hospital. The last really bad one when I was finally diagnosed I fought my husband and he had to get my daughter over to convince me I needed urgent medical care. I don't remember the ambulance drive or the following 4 weeks.
I am not actually in a region I live in London Ontario which just happens to have one of the best transplant clinics in Canada. My score is borderline high for this area. Not quite critical but still pretty s8ck.
The fear of another HE episode keeps me on the straight and narrow.
I've been stuck at home the past 2 years as they suspended my drivers license. No buses my way and taxis are astronomical.
I can't wait to start my new life.

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@gaylea1 I assumed that you knew your diagnosis prior to having HE because of the dates. So I guess they knew your liver was in trouble but didn’t know the cause if they had put you on the list.
You sound so much like me, having to be convinced to go to the hospital. I went to the hospital two times in an ambulance when I had HE, or possibly three. I remember the ride and hoping that none of my neighbors saw an ambulance take me out, but I have no recall of the initial time in the hospital. My episodes, even the very severe one, were over in a few days, max. The first time I had a horrible nurse, all I could think of was nurse Ratched from “One Flew Over the Cuckoo’s Nest”. I think at the local hospital they just did really know that much about HE but that’s no excuse for treating a patient poorly.
I’m glad to hear that your transplant center is such a good one. You really will be so happy when this is over and you can live a normal, full life again.
Are you taking xifaxan, lactulose, or both to control the HE? After my transplant, when I had some pain, my husband would say “no more lactulose”, I hated that so much.
JK

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@contentandwell

@gaylea1 I assumed that you knew your diagnosis prior to having HE because of the dates. So I guess they knew your liver was in trouble but didn’t know the cause if they had put you on the list.
You sound so much like me, having to be convinced to go to the hospital. I went to the hospital two times in an ambulance when I had HE, or possibly three. I remember the ride and hoping that none of my neighbors saw an ambulance take me out, but I have no recall of the initial time in the hospital. My episodes, even the very severe one, were over in a few days, max. The first time I had a horrible nurse, all I could think of was nurse Ratched from “One Flew Over the Cuckoo’s Nest”. I think at the local hospital they just did really know that much about HE but that’s no excuse for treating a patient poorly.
I’m glad to hear that your transplant center is such a good one. You really will be so happy when this is over and you can live a normal, full life again.
Are you taking xifaxan, lactulose, or both to control the HE? After my transplant, when I had some pain, my husband would say “no more lactulose”, I hated that so much.
JK

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@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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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 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 my husband had the same thing. He transplanted 2 months ago! The doctors at Mayo said that he could've just treated the cancer without the transplant, but there would be the possibility of the cancer returning. If it did, he would be back to the beginning. We decided that chemo embolization and transplanting was the best option for him/us. I hope this helps you make your decision.
Blessings,
JoDee

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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 work with the physicians at Mayo Clinic in Minnesota and asked them your question. Our medical director of liver transplant says that every situation is a little different so it can be difficult to say what is the best option without seeing a patient in person with all their medical scans and information. Generally, both the transplant evaluation and the procedure to treat the cancer can be done around the same time. Not doing a transplant has the risk of leaving more cancers remaining in the liver if treatment is not 100% successful. The risk/benefit balance favors transplant in many circumstances. We would be happy to evaluate your situation and offer a second opinion if you would like to come to any of our Mayo Clinic sites, if you have not already been evaluated with us. Thanks!

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