Post-Transplant Blog, Pt. 5

My Transplant Coordinator (TC) called me on Fri. regarding labs. Prograf level was 6.1, but she would like it to be a 7. However, no change in med yet. My potassium was a little high and my sodium a little low--odd since I eat a lot of Pretzel Goldfish. She said that Mayo is no longer prescribing the triple treatment as it is just too harsh. They want to wait for the new treatment w/o interferon or Incivek. Fine by me, as I really was doubtful that I could tolerate the triple one.

I've had calls this morning regarding pre-op appts. tomorrow for thumb surgery on the 26th. A late pre-op evaluation appt. (POE) was changed from 4:20 PM to 11:20 AM. I have an orthopedic pre-op appt. at 1:30 PM, a psychiatry appt. at 2:30 PM to f/u on how I'm doing with Lexapro (okay, no big change), and a pre-admission appt. (registration) at 3:45 PM...which I'll try to slip in after the 11:20 appt.

I'll find out tomorrow what time I need to be there for surgery on the 26th.

Hugs,
Connie

Barry, what she said was that they are no longer prescribing the treatment with Incivek, but are waiting for the one that is in Stage III trials, without interferon or Incivek, but I don't know what it is comprised of. I was more concerned about HCC than cirrhosis. I suppose they feel since I have a new liver, it would take awhile for hep C to cause cirrhosis. I'm focused on thumb repair right now, but will research and ask questions afterwards.

Hugs,
Connie

Well, I'm a lot older than your daughter and probably older than you.

I appreciate your concern, but Mayo has not steered me wrong yet, so I will take up my liver health and treatment with them.

One of the reasons I was wary of the current triple treatment was because they told me that blood would have to be taken every day for 10 days, and then gradually reduce from that. I have a problem with transportation and this would be a real hardship both physically and financially.

Hugs,
Connie

Hi Connie,
Waiting for the new treatment, sounds exactly like my brothers situation, except he's working with his original liver.

David, they don't want to try the triple treatment on your brother?

I am greatly fatigued all the time; otherwise, doing okay. My creatinine and BUN have been steadily climbing. So Lasix has been decreased from 40 mg daily to 20 mg every other day. This seems to be working well...actually peeing more and more frequently now. My fingers are a little swollen on the days I don't take the Lasix, but okay again the day of the med.

Which brings me to today's pre-op visits. They are able to use the labs from the 13th, so that didn't have to be repeated. First appt. was with Pre-Op evaluation doctor. He ran through my meds and I was told not to take anything the morning of the surgery except for Prograf, Lexapro, and Lortab. I had a cursory physical exam (listened to heart, lungs, and looked at my throat.) Pronounced me clear for surgery.

I was able to register for surgery after the doc visit.

Next up was a visit with the hand surgeon's nurse. Lots of papers to sign and info received. I need to be there at 10 A.M. on the 26th (Outpatient Surgery), with surgery at 11:30. I asked if Lortab would be sufficient for post-op pain. She said it should be, but wrote me an Rx for 20 tabs in case I run out of what I have. She said I should be ready to leave Mayo about 3 P.M. on the day of surgery. I will take the van there, but will have my new next-door neighbor come pick me up and take me home. Must elevate the hand and avoid getting it wet for 3 days. Return on the 10th day to get stitches out.

My final appt. was with the shrink. I only had about 10 min. with him as he was running late and I was expecting the van. He increased the Lexapro from 5 mg to 7.5 mg which he sent to Walgreen's for me. I don't see him again for 3 mos.

I need to shower with Hibiclens the night before surgery, so I picked up a bottle at their pharmacy.

So nothing more until surgery, and then a post-op f/u on April 5th, when sutures should be removed.

Hugs,
Connie

Whatever happened to 24 weeks on the triple?

As up to date as Mayo is, I'm surprised they don't yet have Fibroscan. They recently erected a building for robotics and are adding 2 stories to the hospital, currently in progress.

Hugs,
Connie

Before we moved to FL,, Mike was seen at Mt Sinai with the idea if/when it came to transplant time, he would go to NY...He saw Dr Bach.

Connie,
Here's hoping all goes well for you with no complications. You have such stamina and determination...I really admire you. This is a tough disease on people. Take care...may the evening be good to you.
Angie1953

Andrew is not in a transplant program, as he's not in bad shape. If he gets the treatment and it works, he won't have to think about a transplant.

      @mamalama,   ran across a clinical trial for post tranx patients, using all oral tx.  it is in phase 2 and it is for 24 weeks using gs7977+rib. phase 2 should end this summer, and recruitment for phase 3 will be a large multi state study. dont know exactly when. the phase 2 trial is in s.f. and the trial # is nct01687270         barry

Why is nothing ever simple for me? I spent the past 3 days cleaning and doing laundry, getting ready for the aftermath of thumb surgery on Tues. Except for washing with Hibiclens tomorrow evening, I'm all set to go.

However, this afternoon I noticed what seems to be an infection--in the old midriff incision which had to be opened up again a year ago, and after which I had so many problems. The thin there is very thin and I've noticed a little clear drainage from time to time. Recently, 2 layers of dry skin came off. I'm putting the medicinal honey on it and covering with a gauze dressing. It's not a systemic infection, just localized to that one spot. I'm thinking they will give me antibiotics during thumb surgery and also for when I'm back home. So maybe that will fix the problem. If not, I'll go to the ER. I'm sure that's what the TC would tell me to do. I don't think I can go through being opened up again. Even if they have to admit me for IV antibiotics, that would be preferable.

I've been through so much pre-op stuff, I just can't bring myself to cancel the surgery--unless I have a fever and it looks worse tomorrow.

Hugs,
Connie

I would do exactly what you are. Get the surgery and then deal with the infection in the incision later. Unless you have a fever. Clear fluid might not be an infection. If you touch the area, is it tender? I'm so sorry to hear this, it never ends, does it?

It's your call. Red isn't good, but if it isn't tender, that's a good sign. See how you feel tomorrow.