Liver transplant - Let's support each other

I have Hepatopulmonary Syndrome. My oxygen levels have been awful, but I guess not awful enough. I hope they don’t wait to help me until I’m deathly ill.
I’m patient at Tampa General Hospital.

I it’s probably Hepapulminary Syndrome. it can influence getting put on the list and how high. I also have HPS.

Hope the blood gas procedures has the outcomes you need - it does seem that you’ve a lot going on. I’m surprised that you’ve actually been put on the list at 9 - I thought MELD had to be at least 15 to be listed, unless there’s a qualified exception (I don’t know what conditions this includes). Which location is your transplant hospital? I’m assuming it’s one of the Mayos 😁.

Hello… I was just placed on the liver transplant list, but MELD score is only 9. I have to have an arterial blood gas done on May 9th to see how low my oxygen level is. If low enough, my meld score will go higher. I’ve been on oxygen for 8 months now. I’ve been through a lot.

That’s Great Kelly,
we will be able to go through it together. I hope everything works out w your insurance. Mayo fights hard for you if insurance becomes an issue. Keep me posted on how things are going, I will be praying for you that you get all that you need
Melissa

Welcome, @melmc18! Feel free to reach out with any questions. I’m currently awaiting approval from insurance to go through the transplant evaluation process, so am kind of a newbie, but I’m here to support as I can.

Kelly

I have been on a life long journey with my liver. Confirmed I had HepC at age 17 due to blood transfusions at birth. Went through 3 different experimental treatments, finally cured in 2013. Now because of all of the damage taken onto my liver I begin my journey of a transplant. I am very optimistic and hope my evaluation goes well. I am glad to have a place now to connect with others like me and who have already had the transplant. It will be helpful to learn from others. Blessings to All

That is all you get Tylenol supposedly advil is a liver killer there’s no pain killer that any doctor will prescribe because of the abuse of opioids which wrecked for everyone else and if you ask for them another huge red flag because then they believe you are drug addict , 2 years post always in pain but I learned to live with it

@alexandern, I'm sorry that you are experiencing pain that is not relieved by Tylenol. I am in agreement with @footballmum and @azkellyw that we are limited to Tylenol (before and after transplant) However, I strongly encourage you to talk to your doctor about your level of pain. Perhaps there is something else that they might want to give you for the pain control.

Many patients have arthritis pain, and I can't imagine that you are alone with this particular issue. Are you under the medical care of a doctor who is monitoring your liver? He/she will be the best person to ask. Is that possible for you to do?

Good morning
I have not had a transplant for my cirrhosis either/yet and under no circumstances can I take anything except 2,000 mg of Tylenol a day, the others can harm the kidneys then you have double problem. I take three 650 mg a day spread out (noon, 6 pm and midnight). I too had bad hip pain as well as knee and shoulder, turns out it was bursitis and a cortisone injection into each over a period of two months helped immensely. The Tylenol was doing nothing for it as you stated but the injections fixed it for the time being, they last about a year. I can finally lay on that side again. Might find an orthopedic specialist for an opinion. What works for one, doesn't always work for everyone. KW