HealingWell
Search Close Search
☰

Post Transplant Blog, Pt. 4

Support Forums
>
Hepatitis
✚ New Topic locked
1 2 34
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 9/18/2012 7:02 PM (GMT 0)
I'm using the splint for my trigger thumb, which helps a lot with the pain. At some point I will have to get cortisone shots in the base of the thumb or middle of the palm...not sure which.

Today, I had my monthly labs at Mayo. Everything looks pretty good except for GGT which is 800+. That's likely caused by hep C.

After that, I had a Wound Care Clinic appt. The nurse unpacked the leg ulcer and repacked it with a strip of silver cloth saturated with medical honey (made from a plant) and then dressed with gauze and either a Mediplex border or special tape. It is to be changed every 5 days, which means my HH nurse will be here on Sun. I don't think he ever works on Sun., but the home health agency can send someone to do it. I was told that the honey will speed up healing while keeping the wound base moist. The RN today removed a lot of thick, dead skin around the wounds.

I also got the cat I adopted back to the Humane Society today. The agreement is that if they can restore him to good health, I will take him back. He looked so sad in the carrier, I felt really bad for him...but this had to be done. I couldn't deal with his diarrhea any longer.

I have a Pain Clinic appt. for next Mon., but believe I can cancel it as I'm not having much pain now.
Also next week, I'm scheduled for a mammogram at Shands. I have rescheduled this so many times, I absolutely need to get it done and behind me for another year. Also need to get my flu shot soon.

Hugs,
Connie
Posted 10/12/2012 2:29 AM (GMT 0)
It's been awhile since I updated. I did have the mammogram and a letter stating that it was normal.

At my last Mayo Wound Care visit I was discharged from that clinic. My HH nurse left the agency and is going to be doing wound care inpatient at a local hospital. So I will be seeing another nurse every 5 days, but I think I will be down to a Band-Aid in another week or so and soon discharged from Home Health, as well.

My leg ulcer is nearly healed so the pain is minimal from that. I canceled the Pain Clinic appt. and got off the oxy.

I received an itinerary from Mayo for this month. The week of the 22nd, I will be at Mayo nearly every day, having tests, scans, and consults. Next Tues. I will have an MRI of my rt. knee as x-rays show arthritis and it's painful. My TP coordinator is checking with the hep doc to see if I have to have a biopsy since I had one in Jan. I haven't heard back from her, but suspect that I WILL have to undergo biopsy. I'm going to try to move some of the appts. around, so I won't be there all day.

The Humane Society had my cat in their clinic for 2 wks. and brought him back to good health. So I brought him home, where he is doing beautifully and is very affectionate. The HS gave me 10 lbs. of Rx dry food and 12 cans of Rx wet. I didn't think that Mac would ever be a lap cat, but he sure is!. They didn't check him for ear mites, which he does have. I got ear mite medicine for him yesterday and am treating him.

That's about it for now. I am so glad to finally be feeling better!
Posted 10/12/2012 3:05 AM (GMT 0)
That's so great Connie! You've done so much for everyone here, it's time for you to get better. And Mac the cat doing well is another plus. I miss not having pets, they always love you.
Posted 10/12/2012 4:50 AM (GMT 0)
David, are you a cat or dog person? I seem to remember your saying that you prefer cats. I know they tell post-transplant patients not to have cats (or have someone else deal with the litter pan.) But I use a triple mask and rubber gloves when I deal with the pan. So far, no problems.

Hugs,
Connie
Posted 10/12/2012 12:55 PM (GMT 0)
I like both dogs and cats. All of the cats I've had go back and forth from inside to outside. A litter box is only for when I'm out of the house for a while. Dogs take more work, as you can't just leave them for more than a few hours. Before my liver problems, I has a black lab and 3 cats. All were old and passed away within a few years of one another. At some point I'll get a kitten and go from there.
Posted 10/12/2012 5:32 PM (GMT 0)
My cat is an indoor-only feline, which does keep diseases at bay. Apt. management will not allow pets to run freely outside without being on a leash, and I'm not going to get into that. My last two cats were trained to walk on a leash. Sometimes I'd just tie them up outside for awhile (previous apt.) so they could get some fresh air. I had to put them down before I moved here, as both were having old age problems. Hardest thing I ever did. My new cat is less than a year old. So when I die, should I bequeath him to you? =^..^=

Hugs,
Connie
Posted 10/12/2012 9:41 PM (GMT 0)
Only if I outlive you. Having almost died a few times, I take nothing for granted. Not being ghoulish, just the reality of life/death. Every day when waking is enough for me. I'm really happy that Mac has adopted you. I tried a leash on my cat once. It was ugly.
Posted 10/12/2012 10:03 PM (GMT 0)
They really have to be trained to a leash when they are kittens.

Hugs,
C.
Posted 10/13/2012 4:37 AM (GMT 0)
I have a really heavy schedule of tests, scans, and consults at Mayo the week of the 22nd, due to being one year out from transplant. I got on the phone today, talking to scheduling. I was only able to rearrange a couple of appointments, but will still have 3 full days there that week and 2 partial days. My Transplant Coordinator was supposed to find out if I actually need to have a biopsy, but she hasn't gotten back to me about it. I left a message for her today, and hopefully I'll hear back on Mon. It would be really great if I could skip it, as it's not my favorite thing, but also because I have to line up someone to be there with me for about 5 hours.

I have one appt. next week for an MRI of my rt. knee, which has nothing to do with my liver. X-rays showed arthritis, but my orthopedic surgeon wants to make sure it's not osteonecrosis, which caused me to have hip replacements. It can hit any major joint.

I'll document all the tests, etc.

Hugs,
Connie
Posted 10/19/2012 3:54 AM (GMT 0)
I had the knee MRI, but won't know results until I see my orthosurgeon in Nov. I was able to push a couple of things on next week's schedule to Nov. Still, I will be at Mayo all day Mon., biopsy on Tues., back again on Wed., off Thurs., and a doc appt. on Fri. Mon. is going to be the worst. My first appt. is at 7:40 AM and my last one is at 5:30 P., which will last for about 2 hours. I'll be lucky to get home by 8 PM.

Also, I'm fighting off a cold that is trying to come on.

I'll be here on the forum for the next 3 days, but will be mostly absent next week.

Hugs,
Connie
Posted 10/19/2012 4:23 AM (GMT 0)
It never ends...
Posted 10/19/2012 3:36 PM (GMT 0)
How right you are, David. sad

Hugs,
Connie
Posted 10/20/2012 5:48 AM (GMT 0)
Connie,
What a hectic schedule! Really hope that you don't get a cold. Just had one for a week and it was HELL. Only good part is hubby didn't get it, but I tried to keep away from him.
Thinking of you next week, as you go through all those tests, etc.
Angie1953
Posted 10/20/2012 6:51 PM (GMT 0)
Thanks, Angie. I seem to have beaten the cold with my sure-fire remedy of AS+ and vit. C. Mayo didn't want me to use AS+ after transplant due to the sodium content, but my sodium has been fine and if it spikes for a day or so, oh well...I've beaten a worse enemy, a cold.

Hugs,
C.
Posted 10/23/2012 9:58 PM (GMT 0)
I had my biopsy without any problems. This doc took it slowly and there was even less pain than the one done in Jan. I had no anti-anxiety meds prior to the procedure and no pain pills afterwards.

I'll write more about everything when the testing is complete.

Hugs,
Connie
Posted 10/24/2012 2:12 AM (GMT 0)
Other than your tests, how's Mac?
Posted 10/24/2012 2:21 AM (GMT 0)
I'd forgotten about Mac...hello kitty? He being good for you this time?
Posted 10/24/2012 3:46 AM (GMT 0)
Mac is doing great...already spoiled. Can be like a 2 y/o. Anything I say "no" to is what he wants to do. He's become quite the lap cat.

I looked up my labs online from yesterday. The liver enzymes continue to climb. Also there were 2 tumor markers that were elevated. Of course, that's worrisome. Everything else was normal or near normal.

Hugs,
Connie
Posted 10/24/2012 12:28 PM (GMT 0)
A bit of silver lining in that big black cloud " Everything else looked normal " . Glad to see your still kickin butt .


A. Ziffle
Posted 10/24/2012 2:34 PM (GMT 0)
Kickin' pig butt...

Ziff, could you send me your phone number, email isn't getting through.
Posted 10/24/2012 3:50 PM (GMT 0)
Too tired to fight...just going with the flow. If it IS HCC, they can treat it but there is no way I'd go through a transplant again. When I spoke with my TC the other day and asked about hep C treatment, she said they would wait until the liver is scarred at a Grade 4, Stage 4. I think this is crazy. She explained it to me, but I still don't really "get it."

Hugs,
Connie
Posted 10/24/2012 4:00 PM (GMT 0)
Connie, this is totally opposite of what they said at Miami

They said his treatment likely failed last time because he was in a weakened state and they wanted to get it this time while the liver was still good.

They changed their tune at Jackson in the last year...before they took your guy's view. Then they hired a new doc who is big into trials...they recruited him to get the $$$ for trial research.

And now they want to treat everyone and their dog.

Hmmm.

Not sure I have a firm view personally.

Hugs,

Carol
Posted 10/24/2012 6:37 PM (GMT 0)
I don't get their attitude. You've had far more tests than I, and yet they won't treat the Hep C until it's too late. My docs suggested (and I agreed) that interferon/ribavirin be started when my viral load started to rise. That was a year after the transplant. Their theory was that my new liver needed protection. I understand why they might hold off on you, as there were other medical problems. Now that you're over them, they need to help with your Hep C. I agree about a second transplant; as I wouldn't do it again. Not complaining about the results, because mine have been very good. I've had enough major surgery for a lifetime. And, I believe that 2 livers are enough for any one person.
Posted 10/24/2012 7:32 PM (GMT 0)
TPC said that the treatment can mess up the Prograf and lab values; that the protease inhibitor is very, very rough but "it works." Someone needs to explain this to me again...why they want to wait.

Hugs,
Connie
Posted 10/25/2012 9:35 PM (GMT 0)
My Coordinator called today and said that the MRI was fine--nothing seen in the abdomen. She noted that hep C can cause elevated AFP values. My ALT and AST were also increased.

I'll run down the activities on Mon. and Tues. when I get some more rest. I am still wiped out.

Hugs,
Connie
✚ New Topic locked
1234