Post Transplant Blog, Pt. 4

Connie,
Just some dumb thoughts from me on the medical front. I know how this continuing problem with infection must be dragging you down. Stay on your doctors, sometimes it sounds as if they aren't doing enough. Maybe you need to be receiving IV antibiotics to really know it down.

UPDATE: I have called my TC 3 days in a row and so far no answer. I checked yesterday to see if she was on vacation. Was told "no," she is there. I got a call yesterday from Scheduling to let me know that 2 appts. scheduled for Aug. 1st have been cancelled by Mayo--no need for them. I had been sent a new schedule, but didn't check the mail until last night. When I got it, I noticed that the 2 appts. were with the TC and my old hepatologist. I think they're trying to get rid of me...which makes no sense, as I'm only 9 mos. post transplant. It could be that they want me to use my Primary Care doc for the bone issues, etc. I'd rather not, since she's at Shands and it will literally be an all-day affair if I have to go there. Also, it's a germ-laden environment--both the clinic and most of the patients are dirty.

I'm still in some pain from the calf infection, but the swelling has decreased considerably and the redness is also decreased. I had HH here yesterday and they will come again on Fri.

P.S. TC called. It was just as I thought: They want me to go to my PCP for issues other than liver, and she said my liver is doing fine and kidneys okay. I feel the bone problems are from the Prednisone post transplant...but I guess that doesn't matter. I am an active patient in the Ortho Clinic, so she said I could try on my own to get an appt. for x-rays. Otherwise, it will be Shands.

Hugs,
Connie

The Pain Clinic visit yesterday went well. They prescribed 90 oxy to last me a month.

I made an orthopedic appt. for Aug. 20th, with the surgeon who did my hip revisions. I will have x-rays that same day, prior to seeing him.

Home Health nurse was here today. The abrasion is obvious, though it's not gotten worse or infected (thank you, Lord.) Tomorrow I go to Wound Care Clinic at Mayo, followed by HH again on Fri. It just never ends...but both wounds are looking better.

Hugs,
Connie

Connie,

I am glad you were seen by both an Infectious Disease guy AND a vacular person.  Good to look at all reasons for not healing.

Not sure about Valcyte, good you are asking.  Mike went back on those for 1 month...got a special dispensation from Medicaid...as the copay for 30 days without insurance is $1895...so you are taking the good stuff!

Keep us posted about the treatment protocol at Mayo re Hep C treatment.  Mike has that to look forward to also. David is encouraging sooner than later...and he continues to be Virus free post treatment...on the combo...so he is our poster boy for not waiting.

I'm glad you got some sleep this afternoon. I think the Hep C is likely causing some of the fatigue, but I also think not being young, having those artificial limbs keeping you less active than you might be if that had never happened, and still under a year post transplant, plus plagued by the wound dilemma all work toward fatigue.

The site has been really busy...that will keep you young!

Did you take to them about possible fibro? Or is that for another day? 

The Olympics are on here all day long and I'll miss that when they are over...back to worrying about which movie star is stepping out on whom!!!!  And all those negative political ads...bring on the swimming and gymnastics!

Hugs,

Carol

 

I believe Valcyte is antiviral, not antibiotic. I was given it when I had shingles, 22 years ago. Then I took it for 3-4 months after my transplant. It is used to control CMV, too.

Either the Wound Care nurse left work early yesterday or they didn't have the culture results yet, but I never heard from her regarding culture results or what they would be giving me. I thought I would finish the Levaquin today, but I have enough for tomorrow, as well. Not that it's doing much.

Hugs,
Connie

I haven't posted in awhile. I'm still dealing with the leg wounds and infection. The primary wound is nearly healed, but the 2nd one is the size of a nickel and draining quite a bit. It still hurts and the ankle and foot are swollen. The redness has faded quite a bit. Home Health is still here twice a week and I'm still going to Mayo Wound Care every 2 weeks. My last dose of Keflex is tonight and it's still infected. I'm seeing the WC nurse at Mayo on Wed. and will see if they want to continue the Keflex or try something else. I am really tired of this.

Something new today: I just noticed that the wound in my midriff that caused me so much trouble after they opened me up again in March, is leaking a thin light yellow fluid. The skin over that spot is very thin and it's coming from there. I hadn't noticed until I just opened my shirt. The waistband of my shorts was wet with it. I just put a Medi-Plex border dressing on it and took an additional 20 mg of Lasix.

If all this weren't enough, yesterday I adopted a cat from the ASPCA in a big, free adoption event. More than 700 cats had been rescued from a "sanctuary" where they were not getting medical care and diseases spread throughout the population. Some of these cats were in really bad shape. They've been under the care of the Humane Society which nursed them back to health for 5 mos. However, all the ones available here had something wrong with them, from medical to behavioral problems. The one I adopted is beautiful--a brown mackerel tabby, lovely markings. I held him in the shelter and there was no problem. But maybe because of the strange environment here, he is hiding out under my bed. When I'm sleeping or on the computer, he uses the litter pan and found his food in the kitchen. But I can't get him to come out. This is a problem because he needs to take 3 different medicines every day. One of them is 3.75 mg of Prednisone and I know he can't just stop that suddenly. He hasn't had it since yesterday morning...or his other meds, either. I don't know what to do. I'll call the Humane Society in the morning to tell them of the situation. At this point, I couldn't even get him in the carrier to take him back. I know I'm not going to give the apt. mgr. the pet deposit until I know for sure that I'm keeping him.

I have a lot of appts. coming up. Next week I have the CT of chest that I'd missed, plus a mammogram at Shands. Every week this month, I will be at Mayo or Shands twice a week (Mayo all except mammo.)

Hugs,
Connie

Thanks very much, Jayne Louse. It is a bit discouraging, but I keep on plugging along.

Hugs,
Connie

Thought I'd give the exact pertinent lab results from 08/15/12, including normal range. Bear in mind that these are 10 mos. post-transplant, with hep C still assaulting my liver, but no scarring yet:

Alk Phos - 237 (55-142)

Prograf - 6.7 (5-15 therapeutic range)

AST - 117 (8-43)

ALT - 49 (7-45)

GGT - 715 (6-29)

Bili, total - 1.3 (0.1-1.1)

BUN - 23 (6-21)

Creatinine - 1.2 (0.6-1.1)

INR - 1.0 (0.8-1.1)

Glucose - 86

NA - 136 - (135-145) (sodium - one would think mine would be even lower, as I do low-salt diet.)

K - 4.6 (3.6-5.2) (potassium - I was on a supplement for about 6 wks. post transplant, until it normalized.)

Hugs,
C.

Dates of appts. were somewhat changed. I saw the hand specialist this morning at Mayo. I do have a "trigger finger" in my thumb. He gave me a hand splint that immobilizes the left thumb. It has lessened the pain. I've had it on since this AM. He also mentioned that the next step would be a cortisone injection in my hand (not anxious for that), and surgery would be a last resort (and I made it clear that I don't want surgery unless absolutely necessary.)

I rescheduled the knee MRI and f/u consult to Oct. Next Tues., I will have labs and Wound Care at Mayo. I am going to request that the HH visits be reduced to once a week, as the wound is not draining, though still healing.

Scheduling called me and someone had requested a Pulmonary Consult, so I will have that in Oct., I think. This will be f/u of the chest CT that was done. I'm a little concerned about what may have been found.

Mack is still with me. I spoke to an intake person at the Humane Society yesterday and explained the problems I'm having with the cat. She said I could bring him in anytime before 5 (except Wed. when they are closed) and she would alert the desk to it; i.e., that an exception is being made and he doesn't need an appt. He is still not letting me touch him, though he lets me come close. He does go into the carrier at night...likes to sleep in there...but I'm going to have to lure him into it with a treat or his favorite toy in the daytime, and then hope I can get someone to take us to the HS on a moment's notice. I am wearing a triple mask and rubber gloves whenever I come in contact with the litter pan, even just to scoop the waste. I told the rep that I would be interested in taking him back if they can rid him of his medical problems. The ear that had a large polyp removed seems to be bothering him...he scratches at it.

Fatigue is still plaguing me, but nothing has been mentioned about hep C treatment yet. They are waiting for my leg wounds to clear up. I also believe they want me to get past the one-year post transplant anniversary.

Hugs,
Connie

Ann, thanks for your input. I appreciate that. I also have bad reactions to oral steroids, so it's good to know that injectible ones will be different, if that's what I need to have done. Ironically, I awoke today with a rt. thumb trigger finger and knot at the thumb base, just like on the left. So I may need to return to the hand surgeon to get a splint for the rt. hand. It's really odd how I can go to sleep without pain and wake up with this new, painful rt. thumb. o :

Hugs,
Connie

Carol, I absolutely will not have surgery unless I'm in severe pain and can't use my thumb/hand. I don't think they would cast the hand. My HH nurse had 2 fingers with trigger finger and had the surgery to clip the tendons and then restitch them loosely. He said they just put a big bandage.

I had my left ring finger operated on many years ago...had a Boutonniere deformity from an infected finger healing improperly...and they put me in a cast for 6 wks. following surgery. When I came out of the cast, my arm and hand were skinny and stiff. I took pottery classes for awhile, as kneading the clay was great PT. I've never had any problems with it since.

Hugs,
Connie

Thanks for your input, Ann. I've read that the trigger finger surgery is done under local anesthetic. I've had needles in my hands before and it's very painful. Hopefully, I can keep surgery at bay for awhile.

Hugs,
Connie