Post-Transplant Blog, Pt. 5

Mon., Nov. 12th, I went to Mayo for several appts. First up was a consult with my orthopedic surgeon regarding the MRI of my rt. knee which has been hurting a lot several days a week. The diagnosis was torn cartilage and arthritis, but no osteonecrosis (which took my hips.) The doc said if I could take NSAIDs, that's what he would prescribe, but those are a no-no for a liver patient. So Lortab or acetaminophen is all I can take. Neither of us felt that surgery was warranted right now. I was curious as to how I tore cartilage, but the ortho doc said it's something that happens with age. He noted if 100 people in their 60s were tested, 90 of them would have that diagnosis.

Next up were labs. I had fasted from 10 PM the previous night. However, about 2 hours before my blood tests, I forgot I was fasting and had a donut and flavored coffee which was sweet. My glucose was 136.

Finally, I had an EKG. They are making these easier and shorter all the time.

I had started a 24-hour urine collection Mon. AM and handed it in the next AM.

On Tues., Nov. 13th, I had appts. at 8 AM (groan) with my hepatologist and my Transplant Coordinator (TC.) I saw the TC first. My MRI showed no cancer, hallelujah! My blood work showed some liver enzymes had gone down a few points. I had to tell her not to pay any attention to the glucose level--that I had eaten sweets 2 hours before the test. Also, there were about 16 hours between doses of Prograf, which made my Prograf level abnormally low. So I have to make sure it's only 12 hours in the future.

We discussed hep C treatment with the new 3-drug one. She was not in favor of my doing it, as she said it would mess up the antirejection meds, blood had to be taken daily for the first 10 days, and treatment is physically and mentally very difficult. She had told me that they would wait until liver scarring was Grade 4, Stage 4. When the hep doc came in, I thought he would also be against the new treatment, too. He surprised me by saying I should try it. When I asked about the biopsy, he said it was Grade 2, Stage 3--just in the year and 3 wks. since I got a new, "pristine" liver. I expressed my concern about it causing cancer again.

First of all, they want to see the results of the 24-hour urine, as my kidneys need to be functioning well to start treatment. I know my creatinine this time was 1.0 (normal.) I was told that the treatment would make both my red and white cells low. I already have some slight anemia, so the doc said they would need to get iron under control before I start treatment. They also want another endoscopy and colonoscopy since it's been over a year and I have 2 small ulcers in my stomach (I thought it was one.) Doc is wondering if they are bleeding and causing my anemia. I think it's because I don't eat red meat. I was told that prior to starting treatment, I would be switched to cyclosporin from Prograf and get stabilized on that. Also, they need to find out if Medicare will pay for treatment. I have a feeling that they won't approve the Incivek, in which case I'd have to apply to the drug manufacturer for charity help.

I expressed that I would rather not do any further appts. this month and they were okay with that. However, they want everything in place to move forward by Feb. 1st.

Hugs,
Connie

You know, the way I've been feeling led me to believe that the hep C is progressing and damaging my new liver. However, I was surprised that the scarring was that bad. David, do you know what your scores were before you were put on treatment again?

Hugs,
Connie

I know one reason they held off from treatment was because of all the issues I had after being opened up again in March. The leg ulcers are now mostly healed...no more HH nurses. No problems with edema, as long as I stay on 40 mg of Lasix daily and watch the salt. And I've had most of the tests I had prior to transplant, so they have a true picture of what is going on in my body.

Hugs,
Connie

I received a packet of medical records from Mayo today: Doctor's notes and results of testing and lab work. In describing my transplant, the doctor notes that the donor was "brain dead." That's new info for me. All I know otherwise is that it was a young donor. It may have been a critical head injury.

As a former transcriptionist, errors stand out to me. This time, it wasn't the transcriptionist making the error, but the doctor. He said I should "continue iron supplements." I've never taken them or been told to take them. In fact, I said to him that I was told not to take iron. He also noted that I "didn't recall when my last colonoscopy was." FALSE. Of course I remember, as it's the only one I've ever had. I told him it was during pre-transplant evaluation, in Oct. of '11. He obviously wasn't listening all that well.

Hugs,
Connie

Well, that's true, David, that the organs would need to be on support to keep them healthy. Since this is FL, I wouldn't be surprised if the liver came from a young person riding a motorcycle or scooter with no helmet.

Hugs,
Connie

Barbara, I certainly know that feeling of being afraid that the cancer would get me before I got my transplant. HCC does grow quickly.

I never did have pain. The only pain I had (and still do) is on the left side, in the stomach area. Nothing ever showed up on scans, but on endoscopy they found 2 small ulcers--so I'm sure that's where the pain is from.

It's good that Dennis is getting chemoembolization on Wed. That will shrink the tumor. It takes a few weeks for it to work, so they will probably do a scan on him 4-8 wks. down the road.

Hugs,
Connie

My good luck to you... keep the faith.

Regards

Jubi

I'd rather have a colonoscopy rather than wrap and send presents...

I'm with David on the present thing.

I'm gonna send each of the girls some $ and let them do the shopping, or help to pay the oil man..their choice.  I'm so done with shopping, wrapping and mailing.

I have one gift to get for my sister and I send a package to friends in Germany...easy stuff, candy and calendars and a puzzle. It is more of a joke than a GIFT giving!

Best to all this weekend.

Hugs

Carol

 I just walk down to Sam Druckers and pick up a 50 lb. bag of the highest quality hog feed and shovel it out on Christmas day .

  A. Ziffle

 Yes David you could certainly say I'm multitalented .

A. Ziffle

Bump.

When I see that ad, I always think of Ziffle, too!