Post-Transplant Blog, Pt. 7

The nurse got here after 6 and was locked out downstairs. For security, the doors automatically lock at 6 PM, but someone let her in. She changed out the receptacle. I don't think they need to do that with every visit, though.

I can't find the CD for my printer, so I can't do a factory restore to my puter until I do. I'll have to make do with a very slow computer for now.

Hugs,
Connie

Thanks, Rick. I'm going to their help site, anyway, as I'm having a problem with screen printing from the Internet some of the time.

Hugs,
Connie

Connie,

I'm happy to read that things are progressing well! I had spent some time going back and reading through threads (had to stop after a while because there were a lot of tears), and you certainly seem like the fighter that's required to kick Hepatitis in the butt! I hope you continue to feel better from this surgery .

Have a great evening!

 

David, I agree.

JM, thanks for taking the time to read some of my earlier posts. I am more than willing to beat hepatitis's butt, but they keep delaying treatment. I'm afraid by the time they get around it it, the cancer will have returned and I'll be ineligible for tx. I'm a realist, not a pessimist.

Hugs,
Connie

I spoke to my TC yesterday and she said that I have a chest CT scheduled in July. So no urgency.

The nurse came today to (I thought) take off the wound vac. However, she said she had no orders to do that. I told her that I am refusing further treatment, as I know I have the legal right to do that. I had only agreed to 2 wks. and it's been that long. We had a bit of an argument, but she acquiesced. So the darned thing is OFF! If Mayo wants the wound monitored, I will have to get new orders tomorrow. Meanwhile, I have to make some saline solution to do wet to dry dressings.

Hugs,
Connie

Thanks, Angie. I will post results of tomorrow's blood work and 2 doctor appts.

Hugs,
Connie

Mae, I do!! And free!

The plastic surgeon was very happy today with the way the midriff wound has healed. He is having me use zinc oxide ointment on it twice a day for 2 weeks, to further enhance healing. I was happy to learn that skin grafting would be an overnight hospitalization and the donor skin would be taken from my thigh. He did state that I may need the wound vac again after the skin graft; otherwise, there are a lot of dressing changes. But if course I would rather do that or have home health do it at least some of the time. Anything but the dreaded wound vac again. But we will discuss that when we get closer to grafting. I will see him again on June 14th.

I next saw the transplant surgeon and her P.A. They looked at the wound and were pleased that it was healing so well. I did mention to the surgeon that once I got the wound skin grafted and healed, I want to go on treatment of some kind for the hep C. My feeling is that we can't keep putting it off. I'm fearful that a new HCC will appear in my "new" liver, and she agreed with my line of thinking.

My ALT and AST were actually down, with the ALT being in the normal range. The AFP was also down a couple of points.

I will post the actual numbers, plus other lab results, later on. I'm really tired right now. Been up since 5 and only had 5 1/2 hours of sleep...not nearly enough. And went to all 3 buildings at Mayo.

Hugs,
Connie

Connie,
It sounds as if you're finally getting some closure (pun intended).

Glad you had a good day. Forward progress on many fronts.

Hugs

Carol

Hi Connie.

Why is your AFP level elevated? Has this always been elevated after your transplant, or is this a new finding?

In regards to prograf, do you also take cell cept?

We should take our act on the road, Arneeb.

WD, the AFP started elevating about a month after transplant when the hep C started attacking my new liver with a vengeance. But it's always been above normal due to the hep C. I was only on CellCept for about 2 months, if that. Since then, I've only been on Prograf.


Mae, they are saying the AFP elevation is from the hep C. It had been at 9 for quite a while and then made a jump. They look for trends...not just one high value, but whether it continues to trend upward. It CAN indicate a cancerous tumor. The MRI that I had in May did not get the pics they wanted with contrast, which would tell us for sure if there's HCC or not--because the vein blew just as the contrast was started. So that has to be rescheduled and I think it will be in July, since MRIs are hard to schedule and they want me to get past the skin graft first. I will also need to have the PIC team or the infusion center to establish an IV prior to the MRI, since the regular nurses just can't do it.

Was it you that asked about CellCept? I was only on that for about 2 mos. I'm just on Prograf now.

I do believe Mayo will want Richard to remain close by until they see how he does on treatment. If he has an adverse reaction or they need to change the dosage or take him off treatment, they will want him to be here.

P.S., The phone ran as I was typing this and it was Mayo. They have scheduled an MRI for me on June 21st. If the plastic surgeon plans to do the skin graft around that time, I will have to reschedule the MRI. Also, I need to remind them to schedule the IV access in a different dept. prior to the MRI. But I'll wait until I know if the MRI can be done on that date.

Hugs,
Connie