Liver Transplant

I have been told I need a liver transplant. I have been diagnosed with G.A.V.E Disease last month before that I was diagnosed with fatty liver and starting of cirrhosis back in 2016. When I started throwing up blood in May they put a shunt and tips in my liver. They have referred me to a transplant hospital, but they haven't sent my paperwork from here. I want to get a second opinion but I don't know where to go. Any suggestions

@tmmmrlts, I want you to get the best care that is available to you.
I was able to be evaluated and listed at my regional transplant center in central KY for my liver transplant in 2008. And then, when I needed specialized care, it was the director of the transplant center who contacted and arranged for me to be transferred to the Mayo Clinic in Rochester MN, where I was treated and where I got my transplant. I would recommend the Mayo Clinic to anybody who is looking for the best transplant center. However, distance would have been a barrier for me if not for the emergency/life-death status of my condition.

Have you been successful in tracking down the status for who is sending your your medical records? It is highly possible that someone has sent them and they are 'lost' in the cyber world. It is also possible that they did not get sent. I suggest that you make a personal visit to the records department of your medical center and get paper copies of everything so you can hand deliver if necessary.

I have located this Blog post > Transplant>Three Reasons Why Getting a Second Opinion Is Worth It
Here are Three Reasons Why Getting a Second Opinion Is Worth It from the Transplant Blog on Mayo Connect.
1-To make sure you have the right diagnosis.
2-To get another potential chance if you were turned down.
3-To be at a center of expertise for your specific condition.
Here is the link to the full article:
https://connect.mayoclinic.org/blog/transplant/newsfeed-post/three-reasons-why-getting-a-second-opinion-is-worth-it/

You can also contact the Mayo Clinic Transplant Center for more information about getting second opinion there-
Contact information for Transplant Center FL. MN. AZ
https://www.mayoclinic.org/departments-centers/transplant-center/contact-us/

What is your current doctor doing to support you?

Tmmmrits, if you would like to consider getting a second opinion at Mayo Clinic, here is the link to inquire http://mayocl.in/1mtmR63

There are three Mayo Clinic locations in Arizona, Florida and Minnesota.

@tmmmrlts, I am thinking of you and although it has been only 3 weeks since you posted here, I know that for a patient with liver disease and transplant referral, that it can feel like an eternity. I also know that making connections with medical providers can be difficult during the holiday schedules.

I hope that your records have been submitted by your loal provider to where you requested. Did you see the Mayo contact information that Colleen posted for a second opinion?

Where are you as far as getting a referral to a liver transplant clinic?

Ten years! I had my 10 year checkup at Mayo in late August 2021. Everything went well. Always slightly nervous but get to see old friends and find out some of my favorite doctors have retired! As always wonderful care.

Congratulations on that 10 year milestone! It’s a biggie.
I know what you mean about getting a little nervous when we report to the Mother ship for a checkup. Always that little aire of mystery. ☺️
Do you have routine blood tests at your local clinic?

I'm in need of a liver transplant. What i don't understand is how you can have esophageal varices then not have them.

Hello @tmmmrlts,
If a blood clot or obstruction in one’s liver develops, the blood going from the liver to the esophagus flows into smaller veins, not equipped to handle the higher volume. This may cause the vein to leak or burst due to the abnormal flow. You may have them develop and the veins don’t burst. However, once you’ve had them burst, you become more prone to them bursting again.

When I was first diagnosed, I was already in Stage 3 liver cirrhosis. My liver doctor sent me immediately to have an endoscopy. The doctor tied off five varices, a week later I started vomiting blood. I was in the ICU for five days and sent home. But, the varices burst again and couldn’t be stopped. So, three weeks in ICU and a TIPS, a shunt, was put in to divert blood away from my liver to my stomach, not the esophagus.

It’s important to monitor your blood pressure daily and be aware of symptoms, such as light headedness, that indicates bursting varices. They can burst and you may not vomit blood. Other than doing what you can to keep your liver as healthy as possible, I don’t know if there is anything that can stop them from developing.

However, a lot of liver cirrhosis patients don’t develop them or have their varices tied off and don’t have issues. I’d recommend speaking with your doctor about it, they’ll be able to tell you more about your specific circumstances.

Here’s some info on the Mayo website - https://www.mayoclinic.org/diseases-conditions/esophageal-varices/symptoms-causes/syc-20351538.

Best wishes as you prepare for your transplant journey.