So wondering if it's possible to get another miracle.

Sound to me like he's on his way to transplant, I keep my fingers crossed.

Ziff

Thank you both for the positive replies it really helps give me some hope here.


Karen

You sound like quite the trooper, Karen. Thanks for the encouraging update on your hubby. He is fortunate to have you by his side, sharing this journey and learning all you can about follow-up care and ongoing monitoring/treatment. I pray you get even more hopeful news soon and find ways to celebrate each victory. Blessings and prayers coming your way.

Thank you all I feel very blessed to be able to be even saying the word transplant. Fifteen months ago he was given a death sentence of six months to a year. Now we are starting a process I didn't think would ever be an option thank God and all the many prayers. Today I sent in the forms and all his medical records to the Mayo clinic in Jacksonville. So now we pray even harder and wait. Bless you all and thanks for your support and prayers. Karen

They look at everything together and then decide where to go from there. Sometimes what may be perceived as a bad result to you and I actually moves people higher up on the list. Not saying there's anything wrong with the oncology reports. Hospital departments don't always work together as we'd wish they would either. They conflict over appointment schedules, deadlines and etc. It's not as easy as one doctor calling another and chatting about something. I know they can, but it's fairly rare.


Ziff

I would keep following up in both departments. Keep yiur name in front of them

Good luck getting into mayo

Best
ML

aunt kay, anything new from Mayo? Sometimes you have to call several times...this is all so confusing.

Last we went to TP clinic they promised Mike would get his Hep C RX filled within a month. It hasn't been a month, but it feels like they don't DO the next and next step til we call and nag them. And we don't want to annoy anyone either.

I'm sure you are sick with worry. How is he feeing? How are you?

Hugs,
ML

I had to call for an ambulance yesterday. Chuck had a really bad night and started running a fever and started shaking uncontrollably. We tried the usual things and nothing was working so I called for help and he's in the hospital. they are trying to figure out the source of this fever. They drew some labs and are doing a blood culture but that's all I know right now waiting to see the results. I hate the hospital he's in I have no confidence in this place and that really worries me. Please keep him in your prayers still waiting on news on tp. Karen

I called the Mayo clinic today and they told me they have nothing they can offer us.

They said there was not enough research to support his case. So I guess that was their way of turning us down. We do have an appointment with Piedmont in Atlanta tomorrow so please pray we get some good news. He's seems to be going down hill fast and if he's not eligible he will die without a transplant. I wonder if their are any studies going on for people that need transplants that have had HCC that had spread outside of the liver but is gone. If any of you know how to point me in that direction I'd be forever in your debt. We both are very nervous about tomorrow and I don't know what we'll do if they reject him. I have researched the internet about his status and can't find much on it . Thanks for letting me vent here Karen

Hello Auntkay! I know what you are going thru right now...I know how hard it is - but just keep on researching and making calls. Your wonderful hubby (and of course, you!) are in my thoughts and prayers! I did want to mention one thing - you said that his doctor told you something about starting HepC treatment while you are waiting - I would definitely speak to them again. When a patient already has ascites, the treatment can be very dangerous because of the very big risk of infection. When we were told this, I called several other hep doctors to see if they agreed and they all did - in fact they all said they knew of no doctor who would start treatment on someone with ascites.

I hope the doctors have figured out what's causing his fever and he's doing better. I also know what it's like to have to deal with a hospital you don't trust - it stinks. Like I'm sure you already do, just keep a close eye/ear on everything they do or say - question everything (in a nice way of course, we all know how fragile doctors' ego are!). In my prayers tonight, Auntkay.....

(One more thing...have they drained him and checked that for source of infection?)

I wanted to update you guys on my husband. We went to our appt. at Piedmont a few weeks back to meet with the Transplant Drs. of course they wanted all of his records and the actual disc of his scans so they could view the scans with the transplant team. The Transplant dr. doesn't seem to think for what ever reason that in fact his cancer had spread to his lungs but wants to view the scans with their team. Then he said if the team agrees with him he would have us come back to run some of their own scans. So they did a ton of blood work and we went home to wait for a week to hear from them. Well a week later they did call us back and said we needed to come in and have some more scans. Monday we back and had a MRI & CAT scan. Today the transplant dr. called and told us that according to his scans their is no cancer at all and they will have us come in next week to get him put on the transplant list. Then he wanted to know where was he first dx at because he needs the scans and records from that hospital to even prove he ever had cancer. So bizarre but thank the Lord he is eligible. I'm just so happy to hear we have a chance. Thank you all to for being here to support us during this process. I know we still have a long road ahead with much to learn and I know there will be some more bumps in the road, but today we are just stunned and very grateful. ((((((hugs)))))) Karen