NO metastasis, what's ahead.

I FINALLY got a call an hour ago from the nurse who works with my hepatologist.  She said my doctor wanted me to have the transplant evaluation prior to chemoembolization.  I really don't understand her rationale for this, but I know there must be one.  Maybe I will find out more on Mon.  In the end, I have to trust my medical team at Mayo.  They've never let me down and I know that they know what they are doing.

I also called an old friend whom I've known for 20+ years and told her what's going on.  She is going to take me to the appts. on Mon., rather than my neighbor.  I'm more comfortable with this.  I spoke to the nurse today about the necessity of having someone with me for every evaluation visit.  She said I would need someone for the first appt., for the colonoscopy and endoscopy, and the SW visit.  Not necessarily for others, though I think they would also require I have someone with me for the cardiac cath.  They mailed a registration packet out to me yesterday, so it should come tomorrow.  I can fill it out and attach the necessary info, then have it ready for the registration appt. on Mon.

Will keep everyone updated.  Will probably start a new thread entitled Transplant Evaluation next week.

Hugs,

Connie

ML/Carol e-mailed me and said I could post it:

Mike's Tumor was found during his work up. He had done almost everything over a 2 month period.

MRI, cardiac cath, nephrology, mental health, gallons of blood. 

In Feb he was listed.

In March they found his tumor and decided to wait a month to see if it was growing.

On April 14 they did second MRI.  

No change in size.

But his MELD went UP due to tumor. His regular MELD calculation was 18 at that point. 

He was in ER the next week and one of the hepatologists told Mike he was at the top of the list for his blood type and he would get THE C A L L in weeks not months. (I added under my breath"if he hung on".

They decided to throw the cancer away not treat it as they needed the graft to portal vein etc undamaged. They talked about ablation but it was not indicated because they do ablation while viewing via ultrasound. The location of Mikes Tumor was in "section 8?" and not visualized via ultra sound. 

Throwing the gosh darn tumor away was a great plan in my book. 

This e is important. If you are not uncomfortable with its content you should edit my iPhone misspellings and post on the site. Folks coming along might be encouraged. 

We got a pizza tonight.

He is tired but hanging on.

Hang tough my dear.

Carol 

The great thing about Mayo is that everything is done on site.  They accept my Medicare.  The first three years I went there...when I had tumor treatments and surgery and then many follow-up MRIs and visits...their charity fund gave me carte blanche.  Whatever insurance didn't pay, they did.  After that, they wrote off my balance of $953 when I applied.  So far this year, I haven't owed anything.  But of course, with all the testing they are going to do, chemoembolization afterwards, and then a transplant at some point...I WILL have a balance.  I already have the forms to apply for charity help again.

I hope they don't make me stay all day for the cardiac cath!  Since I live close by, and can't do too much in one day due to fatigue, I'll try to space things out some; i.e., I wouldn't want 2 days in a row of testing.  It takes me a day to recover from the 1st day.  But I could go on the 3rd day.  They've always worked with me on this.  Unless it's absolutely necessary for me to be there early, I make my appts. for noon or later.  It's in their computers now.  They were making appts. for me at 7 AM and every time I would call and change it to the afternoon.  So one of the nurses finally put it in my chart for no appts. before noon.  LOL  (I realize this may change with some testing ahead and for the transplant.)

Hugs,

Connie