Posted 5/15/2012 5:26 AM (GMT 0)
I spent a good part of last week at Mayo. It has taken me 3 days of sleep to get rested. The tests that were ordered were 6-month post transplant tests as well as testing related to my hematoma and lack of healing.
I had the Home Health nurse here last Mon., the 7th, to treat the open wound.
Tues., May 8th, I had fasting blood work at Mayo at 7 AM. They took 15 vials of blood. Since my veins are so tiny, it took awhile to get that much.
At 8 AM, I met with my Transplant Coordinator to tell her what was going on. I focused on the wound and the problems with pain management. I was seeing a transplant hepatologist that afternoon, so she said to work it out with him.
I had a bone mineral analysis at 10 AM. I had an ultrasound of the abdomen scheduled for the next day, but since that was the only test that day I managed to get it changed to Tues. after the bone mineral test.
After that, I had an electrocardiogram at 1 PM and chest and bone x-rays shortly after that. At 3:30 PM, I met with the hepatologist. We worked out a plan whereby he would give me a 2-week supply of oxy and come back each time for a new written Rx before I ran out. He also told me he would be out for 2 weeks in June, so I have to make sure to have enough oxy to get me through that time. I did talk with him about the wound not healing and the pain I'm experiencing, suggesting that something else may need to be done. He wanted to make sure there were no vascular abnormalities in that leg and ordered a vascular study (which turned out to be an ultrasound of the femoral arteries and veins at the groin) for Thurs. He had given me a new Rx for oxy, so I had to get that filled before coming home. I finally got to my apt. at 6 PM. I'd been up since 5 AM. I could barely make it between the elevator and my apt. door without collapsing. And I was still fasting. The lady who had driven me there had an emergency and couldn't come get me, so I had a different neighbor get me to Walgreen's and then to home. She also took me to and from Mayo on Thurs. and Fri. Thank God for good neighbors!
When I got home, I had a bite to eat and laid down for a "nap," not waking up until 4:30 AM.
So thankfully, I had Wed. "off," but HH came to unpack and repack the wound.
On Thurs., May 10th, I had the vascular study at 9:30 AM. After that, at 11:30, I had an IV established and contrast injected for a bone mineral scan at 1:30 PM. That was really difficult. And I was fasting all day again.
At 4 PM, I had an MRI of the abdomen. Most of these tests were looking for cancer. When I was in the machine and they started infusing the Gadolinium, it was burning something awful. I thought it had blown the vein, as this happened once before (at Shands) and it blistered my arm something awful...7 yrs. ago and I still have a scar. I forgot about the bulb in my hand to call the tech, and instead just started banging on the top of the machine, screaming my head off, flailing my legs....until she finally came and got me out. They tested the vein and it was open, so I told them I'd try it again. So I did and it was okay. I do think there was a little leakage the first time, though.
On Fri., May 11th, HH nurse was here to treat my wound. That afternoon, I had to return to Mayo for a meeting with my Transplant Coordinator (TC), Amy, and the hep doc. No cancer was found anywhere (yay!!!.) The liver is working well. My labs are basically the same, although the liver enzymes continue to increase every week. I was told that if they continue trending upward, they will do a liver biopsy to assure that it's the hep C and not rejection. They just did this in Jan. for the same reason, so I feel sure it's just the HCV. Of course, they will not start treatment until my other problems resolve. Meds remain the same except that I was taken off aspirin. Prograf remains at 1 mg twice a day with my levels being 5-6, which is what they want. This doctor ordered some additional tests which he was dictating to the TC and will be mailed to me. I was diagnosed with osteoporosis and will be going on Boniva or Fosamax, whichever my insurance will pay for. I believe this was caused by the prednisone taken for 4 mos. after transplant, as I didn't have osteoporosis prior to transplant. I had some "mild thinning," but that was it.
Meanwhile, I have to go there to see their Wound Care P.A. this Wed. and Infectious Disease (re: the hep C) the following week. I will also have blood work that day. Of course, I continue to have HH here 2-3 x a week. I have been getting the same nurse for about the past 6 wks. Male, been a nurse for 21 years, married 22 yrs., with a severely mentally handicapped adult son. He does an excellent job of packing and wrapping, but the pain is still there. As of today, it was 5.5" inches deep....tunneling down sideways. So it's getting worse I don't even want to think of some of the drastic measures that may need to be undertaken.
I hope that 6 mos. from now I'll be doing a whole lot better. With the fatigue from the hep C, even when I'm doing nothing, it's nearly impossible to get through a schedule like I had last week. I did it, but am really paying for it.
Hugs,
Connie