Transplant Evaluation - What to expect

I was in the ER Saturday night with excruciating hip pain due to weight bearing on the leg that has pitting edema from fluid buildup and the doctor at the local ER acted like I was faking just to get pain meds and did a lot of tests but didn't consider any of those findings and told me to take Tylenol and Advil although I told him more than once I couldn't due to liver failure. Prior to my diagnosis in December, I was an auditor and had Blue Cross and after I had to quit working because of 2 admits for HE with complete amnesia....I applied for disability and haven't gotten it yet and I'm having major financial difficulties....I was approved for medicaid but that meant I had to change all my doctors, and wait for referrals. My evaluation was approved by Humana Medicaid prior to the end of my Blue Cross since there was a 1 month overlap. I now won't have my first appointment with a gastro doctor until April 6 after my evaluation. I will be losing my home and car and saved my last check to move with. I'm 30 miles to the nearest medical facility prior to moving and 100 miles to Mayo Clinic Jax. Friends donated to cover my hotel and food for the evaluation trip or I wouldn't be able to go so lots on my plate and much frustration at the moment.

@beckyy39 - Sad to hear all you are going through. Even though i had good insurance it bothers me that finances can prevent from getting the care they need. I had a friend who died after leaving the ER (his choice - not hospital) the night before because he didnt have insurance/money to cover.

I'm in the hospital now due to HE episode

Being the hospital is no fun. My meld score was not very high initially but the secondary issues were tough to deal with. At one point, my amonia level was up to 400 and my doctors were shocked i was coherent. Goes to show how different our bodies react.

Hope to hear hear that you are doing better, perhaps even with a new liver.

I've been waiting almost 3 years for a transplant

I've been waiting almost 3 years for a transplant

I was in the ER Saturday night with excruciating hip pain due to weight bearing on the leg that has pitting edema from fluid buildup and the doctor at the local ER acted like I was faking just to get pain meds and did a lot of tests but didn't consider any of those findings and told me to take Tylenol and Advil although I told him more than once I couldn't due to liver failure. Prior to my diagnosis in December, I was an auditor and had Blue Cross and after I had to quit working because of 2 admits for HE with complete amnesia....I applied for disability and haven't gotten it yet and I'm having major financial difficulties....I was approved for medicaid but that meant I had to change all my doctors, and wait for referrals. My evaluation was approved by Humana Medicaid prior to the end of my Blue Cross since there was a 1 month overlap. I now won't have my first appointment with a gastro doctor until April 6 after my evaluation. I will be losing my home and car and saved my last check to move with. I'm 30 miles to the nearest medical facility prior to moving and 100 miles to Mayo Clinic Jax. Friends donated to cover my hotel and food for the evaluation trip or I wouldn't be able to go so lots on my plate and much frustration at the moment.

@becky39 I was just going back through the messages and saw this that I had not responded to.
I am sorry that the ER treated you like they did but I don't think that's too unusual these days. They are very reluctant to prescribe any of the prescription pain relievers. I fractured my upper femur in July and the most the ER doctor would give me, and that was with me really pleading with him since I cannot take ibuprofen, was 12 pills.

I'm sorry too for the financial problems you are going through. You are at least very fortunate to have such good friends. I hope your disability comes through soon. When you move will it be to somewhere closer to Mayo Jax? It's tough being so far from the hospital that you need to go to. When you mention going to a gastro, is that a hepatologist within the gastroenterology department? After I was diagnosed up here in southern NH I went to a hepatologist at MGH. That's where I had my transplant. It's about 55 miles away but it can take over two hours some days due to traffic. Most days we can make it in a little over an hour. I go there now for pretty much everything. They have been wonderful.
JK

Good evening all! I've been researching some information and used a MELD score calculator and it says my MELD score is 14 but one of the exceptions said if you have portal hypertension (which I do) the score starts at 22. Does this mean my score is 22? The labs I based it on were done last Friday.