Cirrhosis Support Group

I haven't been on this site for awhile as so much has been going on with so many doctor visits and tests, that I've been a little depressed. But I would really value some input on these procedures I am having done prior to going on the transplant listing, if I am approved. Previously when I posted, it was about a lesion that had been found on my liver and I was going to a hepatologist in Denver for a biopsy. Turns out they don't do biopsies as they feel the danger of seeding to other places during the biopsy is too high risk. Instead they did another CAT and feel their radiologists are 95% accurate in determining if a lesion is malignant, which they felt mine is. So they have scheduled a chemoembolization procedure for me to shrink the lesion while I undergo the process to be approved to go on the transplant list. I have had all kinds of tests done (heart, colon, mammograms,pulmonary, etc, as part of the process and everything has come out good. This week I have to have an endoscopy, and trying off of any varices that might be found, even though nothing has indicated that I have them. The hepatologist wants it done as a precautionary measure, even though I have never had any symptoms or bleeding. Has anyone on this site had any side effects from this procedure? I've never gone under anesthesis, so that alone scares me. Has anyone had successful chemoembo? Both of these procedures really scare me but they are necessary. I go before the transplant team meeting on March 7, and a decision will be made if I meet the criteria for transplant. The lesion will probably give me extra points for the list. I am so scared of all this, but I guess I will have no choice if I want to live as the cirrhosis is not going to go away on its own. At least the transplant will eliminate the alpha1 and not cause more damage to the lungs, and the more I read and hear about some of you out there, the liver transplants seem to be very successful. Just hope staying with my daughter 45 minutes away from the hospital will be acceptable to them as a caretaker, as that is part of the pre-meeting (having to prove I have someone to take care of me). It will be hard as she has two small children and I hate to have them see their nana sick. But any feedback on any of this will really give me some encouragement to keep going with their plans. I still feel so well, it's hard to understand it all. Please tell me some good news?

I have never had chemoembolization, so I can't be of any assistance with that part. I have had many endoscopy's and have never had any problems with them. I have had bleeds in the past and they do banding and now I have preventive endoscopy's done every 6 months. They do not put you completely out for this procedure.....just some meds to make you sleepy and not remember a thing about the procedure. The most it has caused me is my throat is a little sore afterwards...especially after banding. I wish you the best of luck with everything.

Take care and God Bless

Hi pmary,

Don't sweat the endoscopy... I've helped out on many of them as a medical tech and I haven't seen anyone suffer. You generally don't have a complete general anesthesia, but gargle with a numbing medicine and get snowed with IV sedation. They may do it differently for banding, but I don't think so. It should not be distressing, and you shouldn't even remember any of it due to the medication they give.

Do the numbing gargle just the way they tell you... Don't try and cheat if it tastes a bit icky and go half way. This is the stuff that will make your throat completely numb. You'd think the patients would want the doc to get in and out as fast as he can, but I've seen patients motion that they wanted to see what was going on. They're not unhappy at all.

Don't know about the other stuff you mentioned, but the endo should be a cakewalk.

Best of Luck to you!

Don't fear the anesthetic, it's not unpleasant, just groggy coming out of it. Later people will probably tell you that you asked some question many times. You'll probably only remember the last. The chemobilization procedure shouldn't be bad, I don't know about the side effects. Sounds good for the transplant board.

Your daughter being only about 45 minutes away should satisfy them. They usually want you less than an hour away.

I've had 4 endoscopies. No big deal.

I was out for all of them.

A day or two after the procedure, you may have some discomfort when eating at the site where they did banding of varices.

This is because food rubs against the sore.

But all in all, no big deal.

Sometimes after the procedure while you are waiting to be released, they may offer you something to drink, orange juice, ginger ale and maybe some crackers.

It has been my experience that the orange juice, or any fruit juice is NOT a good idea, since the acid tends to feel like burning at the banding site.

The NO also goes for the crackers as they tend to be sharp and not feel good going down.

A soft non abrasive diet is a good rule.

Good luck

Sammy.

Hi Pmary,

The liver Doc just called my daughter and said they discovered from a CAT scan was a 9mm lesion on her liver. They want her to have an MRI to look at it. Did they have you do an MRI?

Thanks to all of you for giving me some info about the endoscopy. I guess they plan on giving me regular anesthesia because of the possibility of banding, and not knowing how I will react due to my low platelets. Still wish it could be just a sedative. But after hearing from you all I'm a little more relaxed about it. Just wish I could get some feedback on the chemoembo, as from what I read the side effects from that can be quite bad (nausea, fever, pain for up to two weeks), and there is a risk of injury to other places and the brochure the doc gave me says it can be fatal in 1 out of 100 cases! They do make you stay overnight for it, so I guess it is serious stuff. Thanks for all your good wishes and prayers. Let you know how it goes. I also have my transplant selection meeting in about 10 days so hope my throat heals by then!

Hi Virginiamom, no I never had an MRI. When they found the lesion on a CT scan in Sept they decided to watch it for three months; then I had an ultrasound which showed it had grown a bit; then another CT a few weeks later, and they've decided to do the chemoembolization based on the change in size. They can't attempt to cut it out before of my cirrhosi. After that treatment they said they will do another CT in about 6 weeks to see if it has shrunk at all, but no mention of an MRI. Hope your daughter's lesion is just a harmless cyst or something. You didn't say if she has cirrhosis or other liver disease. Keep us posted.

Had an MRI after they found lesions on my liver. That was after a full body bone scan. Actually, I've had a couple of MRIs. For me no problems, the machine looked just like the CT machine from my point of view. It is louder (I'm very hard of hearing, but could hear it) they gave me ear plugs. Actually, I just took a nap while they did my MRI. Just let the fatigue take you.

Chemoembo, yeah you could experience nausea, after all it is chemotherapy. The inject the suspect lesion.

they want you an hour away after transplant? for how long?