New Transplant Blog Posts

@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

@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.

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?.

@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

@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!

@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

@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

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

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

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!