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Post-Transplant Blog, Pt. 8

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Posted 8/4/2013 5:04 AM (GMT 0)
Connie

Have the dry dressings made a difference in getting that wound healed finally?
Posted 8/5/2013 1:28 AM (GMT 0)
Yes, Mae, it's doing much better. I expect to be given a skin graft date when I see the P.S. on the 20th.

Hugs,
Connie
Posted 8/5/2013 4:42 AM (GMT 0)
hello everyone,
please forgive me if i am totally in the wrong "place" to post. I don't even know if I am on the correct chat site.
quickly, i was diag with HCC 2 wks ago. my hep c is now with cirrhosis, and i need a liver transplant. i am just beginning 2 b worked up in evaluation. all i can find on this site is for hepatitis. is there a separate section for hcc? transplants? i could sure use some support, as i am alone with a few friends that say they will help me.
i honestly do not want to interrupt this thread, anymore than i have, so if u would just direct me to where i need to be, i will gladly go there!
thank u all so much,
zoarie
Posted 8/5/2013 11:55 AM (GMT 0)
Zoarie, You posted in the correct forum. In order to get good responses you'll need to start a totally new posting and tell us a bit about yourself. Welcome to HW.

Ziff
Posted 8/5/2013 1:11 PM (GMT 0)
Welcome Zoarie!

I am posting here because I see you have not started your own thread yet. I have Cirrhosis due to giant cell hepatitis. I have an HCC lesion of 2.1 which they are monitoring for growth. If it grows, I will be having a treatment called Theraspheres. They inject radio-active beeds into your tumor via the femoral artery. The radiation kills the tumor.

I am already listed at one center and am in the process of evaluation at another. I am #1 at my center now for my blood type, but #6 in the metro Chicago area.

If you put your email in your profile, I can send you links to some websites and support for HCC.

Again, welcome to Healing Well.

:-)
Posted 8/5/2013 5:22 PM (GMT 0)
Zoarie, welcome to the Hepatitis Forum. You are actually on my thread, which is a blog of my trials and tribulations since transplant. To start your own thread/topic, click on New Topic instead of Reply. Give it a subject and post away about yourself and your situation.

I've had HCC twice. Like Susie, I received TheraSphere the first time I had cancer, after first being given chemoembolization. The radioactive beads killed the tumor, but also the rt. lobe. The entire lobe was removed and I did fine on the left lobe for 4 yrs. Then I developed another tumor on the left lobe. At that point, I was told that I would have to receive a transplant. That occurred nearly 2 yrs. ago.

Please start your own thread and tell us the specifics about your case.

Hugs,
Connie
Posted 8/5/2013 6:00 PM (GMT 0)
UPDATE:

I had labs at Mayo this morning. I'm still waiting for my Prograf level, but everything else is available. Aside from the following, everything else is in normal range or just off by a fraction:

Alk-Phos - 174 (55-142)

ALT - 51 (7-45)

AST - 114 (8-43)

HGB - 11.4 (12 - 14.5)

My labs haven't been this good in a long while, despite me feeling poorly.

I also had my chest x-ray, but no results from that yet.

INSERT: Prograf is 7.3...a bit higher than they like, but not high enough to reduce dosage.

Hugs,
Connie
Posted 8/7/2013 12:41 AM (GMT 0)
I spoke with my TC twice today. She said the x-ray showed the same amount of pleural fluid as the first time I was drained, which was 2 liters. She asked when I wanted to have it drained.

I checked with my neighbor who went with me previously and she is available this Thurs. after 10:30 AM. I relayed that info to the TC and also reminded her that I want conscious sedation (or full sedation) and not a local. So at this point, she is trying to set up the time and area where it will be done (I suspect Outpatient Surgery, but it could also be done in Radiology.) I expect to hear from her tomorrow, but at this point the thoracentesis is expected to take place on Thurs. I just want to get it behind me so I can breathe again....for awhile, anyway.

After the draining, I expect they will schedule some more testing to try to determine why this keeps occurring.

Hugs,
Connie
Posted 8/7/2013 12:45 AM (GMT 0)
Hope they get to the bottom of it. So risky a procedure for you. It IS nice to breathe though :)

Happy about your labs though turn
Posted 8/7/2013 1:57 AM (GMT 0)
They should be able to check the fluid and have some idea of where it's coming from, or if there's an infection.
Posted 8/8/2013 5:29 PM (GMT 0)
How did the procedure go today? Are you breathing better now?
Posted 8/8/2013 6:18 PM (GMT 0)
It was quite painful. This time, it was due to injection of the local anesthesia. The doc would do a little bit and then introduce some more a little deeper. But I didn't feel the actual thoracentesis. I am still trying to catch a full breath. After this procedure, the lung cells stick together and it takes awhile for the lungs to expand. So I can only take shallow breaths right now. I'm going to lie down for awhile. After the draining, in which they took out 1200 cc of fluid (a little over a liter), I was sent for an x-ray. This fluid was all from the right lung.The Interventional Radiologist who did the thoracentesis said there was only a tiny bit of fluid remaining. He was afraid to take any more, due to risks such as a pneumothorax (collapsed lung.) This time, I got an extra pillow and positioned my head with my forehead down, so my neck isn't hurting (much.)

David, they always send a sample of the fluid to the lab to check for infection.

Hugs,
Connie
Posted 8/8/2013 6:36 PM (GMT 0)
Connie,

Glad you got through the procedure okay and only have some aches and pains. 

It is a miracle that they can do the thoracentesis or paracentesis to make folks more comfortable.

I wonder why on earth you gather fluid there?

I'm home checking the site often, so I'm doing my share for once in three weeks!

Take a break, rest, nap, etc.

Hugs,

Carol

Posted 8/8/2013 7:58 PM (GMT 0)
Yes rest. It can only help. Sending you some virtual chicken soup :)

Hugs
Posted 8/9/2013 12:31 AM (GMT 0)
ML, since it's all around the rt. lung, I suspect that the liver isn't doing its job in removing toxins.

I took a 3-hour nap and am breathing deeper. Will check in again later, but am going to watch TV propped up in bed. I have to go grocery shopping tomorrow. Thanks for all your help! You, too, Mae.

Hugs,
Connie
Posted 8/9/2013 1:48 AM (GMT 0)
You need to tell them local anesthesia isn't sufficient. There's no reason for you to suffer when it would be easy to knock you out. Having said that, I'm happy you're breathing better.

Right after my transplant (5 days), a friend (who was waiting a transplant in Miami) called me from his hospital bed and he was about to undergo his 6th thoracentesis. A week later he got his liver. He could barely breathe he was so full of fluid.
Posted 8/9/2013 2:27 AM (GMT 0)
Neither could I, David...breathe, that is. Did your friend have a local or general anesthesia/conscious sedation? I made my case for it, but was told that they always use a local...that there's a lot involved with conscious sedation, such as extra staff, etc. At least I had an Attending do it today. Next time, I will get on it sooner and give them sufficient time to set up conscious sedation. This time, I literally could not wait any longer. I had to sit down to even wash my face. I'd walk a few steps and have to stop or sit down. It was bad. My breathing is getting better with every passing hour.

Hugs,
Connie
Posted 8/9/2013 2:38 AM (GMT 0)
I believe he was given a hypnotic, like they give you for a colonoscopy.
Posted 8/9/2013 3:01 AM (GMT 0)
I see you're having trouble sleeping, judging by the time.

I'm sure it's hard to get comfortable but you have a big day tomorrow and you'll need all your strength. Just go slow and take all the time you need.

Hope you liked the chicken soup :)
Posted 8/9/2013 3:07 AM (GMT 0)
Connie

I did some research tonight about post liver TP thoracentesis.

I found a study that said right side fluid in plural space seemed related to surgical damage during TP

You are a small woman. Maybe they didn't have as much space to poke about and I think they had to build a valve or something . I can't recall exactly.

How are you feeling tonight.?

ML
Posted 8/9/2013 3:22 AM (GMT 0)
Doing better, ML. They had to build a new hepatic artery. I think it's the liver itself from the damage of hep C...that it's not able to handle the fluids. A girl I met there the 2nd time was having her 3rd thoracentesis of the week. She said it was from her liver not handling the fluids. I guess some have ascites while others have pleural effusion. One of the doctors had also said he suspected the liver. And yet the docs aren't positive because my liver function tests are not really high. Of course, my labs have never reflected how I feel or what is going on with me.

Mae, don't you remember...I'm a night owl? I slept for 3 hours this afternoon, but will go to sleep soon. Am getting offline and going to read for a little bit and then sleep. I normally don't go to sleep until around 2 AM, but will make it a little earlier tonight.

Hugs,
Connie
Posted 8/9/2013 3:29 AM (GMT 0)
@ Connie...you always seem to amaze me. I can't believe how much you have been through and continue to go through. Wishing you a good night's sleep and hoping you feel much better in the morning :-)
Posted 8/9/2013 5:49 PM (GMT 0)
Thanks, WD. I'm breathing much better today. I only woke up once last night for a bathroom trip. But I'm still a little wiped out from yesterday, plus the usual hep C fatigue.

I'm glad it's the weekend and no Mayo trips!

Hugs,
Connie
Posted 8/10/2013 7:08 AM (GMT 0)
So happy to hear you are breathing again. Not breathing can really beat you down fast.

So if they do figure out what is causing it will they be able to fix it or will you be having this done repeatedly? How much damage has the Hep C already done to the new liver? Does it progress a lot faster than it does with your "real" liver? (Wasn't sure how to put that.)

I know it must be tiresome going to all these med appointments, but I hope you won't wait that long next time.

Enjoy your weekend and some good rest!
Posted 8/12/2013 11:11 PM (GMT 0)
Unfortunately, I am short of breath again and coughing up junk, though my TC tells me that the x-ray taken after the draining showed no more fluid. Well, I guarantee there's some there now. She wants me to call Pulmonology and see if I can get in to see one of the other pulmonologists. My appt. with mine isn't until Sept. 5th, with a CT beforehand. I've already checked and can't get in with him prior to that date. I can almost guarantee that I'll need another draining before that date.

The hope is that if we find the cause it can be treated. Ironically, my labs are the best they've been in awhile.

The TC is going to set up an appt. for me with Dermatology, since labs don't indicate a reason for my constant itching.

Hep C does seem to attack the new liver with a vengeance....ahhh, fresh new liver...yum! And yet they won't give me hep C treatment because of all the other problems. A real Catch-22. I'm Grade 2, Stage 3-4 fibrosis.

Hugs,
Connie
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