Toni, sorry I've not been reading or posting here. Mayo has been keeping me busy with scans, etc. I felt I was healed enough to have the hernia repair, but my surgeon was out of town when I last saw the P.A. (She usually sees me first, then finds him and has him see and examine me.) She called Thurs. and said that he was back in town for only a day, and then was out of town again for a few days. She did manage to make contact with him and discussed my case. He is finally willing to do the surgery to repair the hiatal hernia that developed after the liver surgery. My surgery date is Dec. 14th. So I will have to get everything for Christmas done early, although I will not put up a live tree this year.
I've just read all the posts since I was last here, so there were quite a few. First of all, my liver tumor was 12 cm x 8.5 cm when I was first diagnosed by CT scan only. That was at Shands Jacksonville. They moved like snails there. I first was seen in GI Clinic and was going to be referred to hepatology. After 2 months and additional scans, I switched to Mayo. I thought I was going to need a transplant, and Shands had said I would need to go to Gainesville for that. My b.f. and daughter would not be able to make that trip, which is one reason I made an appt. with Mayo. Mayo said I was not a candidate for transplant, as my liver function was still good, even though enzymes were elevated. Fatigue had been my first symptom for at least a year prior to hep C diagnosis in '93.
At the time I went to Mayo, my tumor had invaded the inferior vena cava (an artery), so it was considered metastasized...another reason I would not be eligible for transplant or even surgery. As I mentioned in a previous post, I was given chemoembolization to shrink the tumor, and a month later received TheraSphere to shrink it even more. Then I was considered operable. Due to the size of the tumor, even after treatment, they elected to remove the entire right lobe of my liver. This was done in mid-May, as I mentioned in a previous post. It went very well, except that I developed a hernia at one of the incision sites, 2 months post-op, so that is what we are addressing now. However, as I said at the start of this post, I've recently had a PET scan with contrast and a CT scan with contrast, and there is no evidence of cancer!
As far as SSI/Medicaid is concerned, your son is better off NOT working. If his doctor could write a letter stating the diagnosis and that he is too ill to work, that might help. Also, he SHOULD have the CT scan. He should also have an MRI with gadolinium and a PET scan with contrast, if possible. Those scans should show whether the nodule is cancer or not, without having to have a biopsy. Also, a blood test for alphafetoprotein should be done. That is a tumor marker. There should not be a waiting period for Medicaid. Medicare requires a 2-year wait after a patient has been declared disabled. In my case, it took them over 2 years to approve me for Medicare, so I got it right away...in fact, retroactively by 2 months. Medicare is based on work history income, and how much has gone into Social Security. Medicaid is generally for those without sufficient work history to qualify for Medicare. In my case, I receive Medicare, but Medicaid pays my premium, and also the premium for my drug plan. Additionally, I think they may pick up some of my hospital expenses under Medically Needy.
What did you mean when you said that Tampa is a Mayo Hospital? Mayo here in Jax uses St. Luke's, but will have it's own hospital on the Mayo campus opening in April!
I hope this has helped you a little. If you have further questions, feel free to ask. One of us should have an answer or be able to steer you to someone who does.