Post Transplant Blog, Pt. 4

I meant to ask if your swelling has gone down. It's great to hear that there's no infection in the bone and the wound is healing. You sound better, too. It won't be much longer and all those peripheral issues will fade into the background.

I had labs at Mayo early this morning. I had left a message with my TC to call me about a new pain med Rx. I had just gotten home at 9:30, when I got a call on my cell phone from my TC, saying there was an Rx for me to pick up and she was hoping I was still there. She offered to mail the script to me, but if it got lost in the mail somehow, I'd be out of luck. Another wouldn't be written. So I'm going back down there on Thurs. She told me that this is the last Rx for this med that they would write, and asked if I wanted a referral to Pain Clinic. I told her yes, as I know it takes time to get in there. Also, I will have to taper down, not just cut it off suddenly. I'm tapering now, but it will be a few more weeks before I can get off the med.

Next week, I have an appt. with Infectious Disease at 7:30 AM, of all times.

Hugs,
Connie

I had an Infectious Disease appt. at 7:30 this AM. I thought we were going to discuss hep C treatment (though I know it can't be done right now.) Instead, the focus was on the wound. Although the pain has decreased, the surrounding area was red and edematous today. I believe the redness is from my scratching. It itches something awful. I'm now using hydrocortisone 1% cream to reduce the itching. Anyway, the first doc thought there might be some infection still in there and was talking about debridement. OH, NO! That would take me back to square one in the healing process. This doc called in a vascular doc who disagreed with Doc #1. Thank goodness...a relief! I'm on no antibiotics at this point and they left it that way, although Doc #1 questioned why I'm still on Acyclovir, an antiviral. Nobody has ever told me to stop taking it. I will ask my TC about this, though.

I had a 4-hour wait until my MRI appt. I went to another bldg. to the cafeteria and had hazelnut latte and a donut. I only allow myself this treat on long days like today (watching my weight.) Then went to the 8th FL where there is a rest area with recliners and blankets. I got about an hour's nap.

They weren't able to establish an IV for the MRI, so it was done without contrast. Since it focuses on bone, not an organ, I don't think it matters. The MRI took an hour, plus about another 90 min. waiting, trying to get IV, changing, etc.

I got home late this afternoon. I had received no call or message about HH coming tomorrow. My regular nurse is on vacation this week. I contacted the W.C. nurse at Mayo who is in charge of the HH visits. She has assured me that someone will be here tomorrow (now today), but couldn't give me a time.

I was so exhausted, I had a sandwich and lay down for a nap. Woke up 5 hours later. I needed it and the leg is looking much better--less swelling and redness has subsided. Sleep, meds, and mealtimes are all now off-schedule. Will get it straightened out tomorrow.

The only thing that was mentioned about hep C treatment was it would be "in about a year." I said I was hoping for sooner, although I realize the leg has to heal first. I have been so exhausted from the hep C for 21 yrs. now--progressively getting worse. I just want to have normal energy...and prevent a recurrence of HCC. I realize the treatment will also drain me of energy and not even sure I can tolerate the sides--but I at least want to try.

Back to Mayo on Thurs. for Pain Clinic. Was surprised to get an appt. so quickly. I still have over a two week's supply of pain med. Haven't been able to reduce it by much.

Hugs,
Connie

I could've sworn the nurse said she would be here between 10 and 11 AM. However, she didn't show up until 2:45.

I now have the weekend free from medical stuff. Thank goodness. I need a break.

Hugs,
Connie

Thanks, Marie. I do have to catch up on laundry and personal stuff over the next few days.

Hugs,
Connie

My Home Health nurse just left. The wound is now 1.5 cm deep, down from 1.9 last Fri.

I received a call from my coordinator's asst., canceling 2 of my upcoming lab visits. So it seems labs are now only once a month! Hallelujah!

There was supposed to be a mandatory evacuation seminar today at 1 PM, but it was canceled at the last minute, due to local "flooding" from Tropical Storm Debby. I don't quite understand this as we are not flooded at my complex where the meeting would be held. Perhaps the fire-rescue workers were needed elsewhere.

Wed., I have a neuro appt. and Thurs. there is a Wound Care Clinic appt. So I won't see the HH nurse again until next week.

Hugs,
Connie

It's been awhile since I updated. There hasn't been a lot going on. The leg ulcer is still healing...still being packed and dressed twice a week. As I mentioned in the last post, labs are now only once a month.

I was up at 5 AM today to be picked up by the van at 6:30 for an 8 AM lab appt. Then I had a couple of hours to kill before my 10:50 appt. with Pain Clinic. I have been trying very hard to get off the oxy. I am now down to an average of one per day. However, when I got up this morning, I had tremendous pain at the wound site. I wasn't on my feet a lot yesterday, so can't account for having so much pain. The PA I saw gave me a new Rx for 45 oxy and a return appointment a month from now. Surely by then I will be done with the oxy.

Home Health RN will be here tomorrow and again next Tues. I have a mammogram scheduled for later this month. I go to Shands for that.

I lost a lot of weight--most of it fluid. I'm now holding steady at 116-117 and trying to keep it that way. I'd actually like to lose a few more, but I'm not dieting...just paying attention to what and how much I eat.

I just got my lab report online. The only things way out of normal range were alk phos 238, GGT at 834, and AST at 104. These readings are the result of hep C.

I will be 9 mos. out from transplant on the 27th.

ADDENDUM: I realize now that I have an infection. I have the symptoms of increased pain, redness, and warmth to the touch. My temp is 98.8 when it is normally around 97. I called and left a message with the Wound Care nurse at Mayo. The Home Health nurse can't prescribe medicine. I am hoping the Mayo nurse will call in an Rx for Levaquin, which is what I was given previously when the wound got infected several months ago. But I know she will probably want me to come in to see her and that will interfere with other appts. this week. I don't even know how it can possibly get infected, since it is covered with a piece of foam and then a watertight dressing. I have some leftover Keflex and have started that until I can obtain Levaquin.

Hugs,
Connie

Thanks, David. I was doing so well...this certainly is a step back. I hope I can get the infection under control shortly.

Hugs,
Connie

Well, if it takes going into the ER, so be it. You have to get this cleared up, before your leg gets any worse.

"Bring a sweater. ERs are notoriously freezing.

Hope things move along faster than at Jackson"

Yep. I've been there more than once.

Don't think it's any faster but it's definitely cleaner and more comfortable...with no homeless people with TB in the waiting room (there's an outbreak of TB here among the homeless...72 cases that are known.)

Off to bed.

Hugs,
Connie

Home Health RN was here today to change the wound dressing. The 2nd spot is now a hole, though not enough to pack. He just laid a piece of the silver packing material on top of the wound. The redness has diminished and so has the pain, but I have a lot of edema in the ankle area and down to mid-foot. It's very discouraging. One expects to have some issues after transplant, but not nonstop for 9 mos. I actually had 2 days last week where I felt really good. And that was just 2 days after all these months. So I know what is possible, it's just a matter of achieving and sustaining it.

Nobody seems to know why I keep getting infections/hematomas. I can only think that the gauze it is cleaned with and the packing material and dressing are NOT sterile--clean and not previously used, but not sterile. And I'm immunosuppressed.

This is soooo frustrating. And between Mayo and HH, I cannot find time to get other things done, like getting my hair cut. The Mayo nurse wanted to see me next week, but I rescheduled it for Aug. 1st. I also rescheduled a mammogram appt. to next month. That will free up some time so I can get some things done.

Hugs,
Connie

While hydrogen peroxide was used for years for small cuts and abrasions, it has fallen out of favor. It seems it does more harm than good. The nurse pours saline solution into the wound(s) and then cleans it out with gauze twirled around a long Q-Tip. After that, he cuts a piece of the silver cloth into a strip and pushes that into the wound via another Q-Tip. Then it's covered with gauze and tape. They've been using a Mediplex Border dressing all this time, but now it's been changed. As for the gauze, I would think that it would flame in the microwave. There IS sterile gauze...the kind you get that is individually wrapped. But neither HH or Mayo uses those (very expensive over time.)

Thanks for the suggestions, though.

P.S. I have new symptoms of a locked thumb and just today a middle finger has locked. I can only blame this on the Prednisone. I am rethinking taking the Boniva that was prescribed. I don't want to take it because of the large risk factor of osteonecrosis of the jaw. That means "dead bone." It dies and disintegrates. ON is what destroyed my hips, requiring bilateral hip replacements and 3 revisions. I will have to discuss it with a doctor. I am not up to a jaw replacement.

Hugs,
Connie