AIH and gallbladderproblems?

Hi! Hopefully, Dany will be able to answer your questions. I don't know if she's around today, but I will alert her to your post.

Hugs,
Connie

My wife is suffering from ESLD due to AIH/PBC and was diagnosed with gallstones this past summer. She was told that gallbladder surger is NOT an option for her, as this type of surgery, with a patient in her condition has a 60% chance of causing her death, either from infection, uncontrollled bleeding, or stiches not holding. She has had several attacks over the past few months, with pain in her right side, extending around to her middle back and right shoulder. She has been prescribed tramadol (40mg) to take when the pain becomes unbearable. Her liver doctor says that once she receives a transplant, then the diseased gallbladder will go, along with the old liver, but until then, there is really nothing that can be done but to try to manage the pain.

Charlie

We were told that no surgeon would be willing to touch her, even doing laparoscopy surgery considering the risks involved, however the gallbladder would be a moot issue during a transplant, as it would go, along with the diseased liver. Her hepotologist was recently concerned that she might have a gallstone lodged in a bile duct, as her bilirubin was a 7.9.  She ordered an MRI which came back negative.  She has now been told  that she will just have to live with her gallblader issue until she gets a transplant.

Dany,

To quote her hepatologist, "due to the risks involved, there is not a surgeon in town that would touch her with a 10 ft pole." Her attending hospital physician during her last stay said almost exactly the same thing.

We are not a physicians, so we have no choice but to follow their recommendations.

I totally agree.  Trust in her docs.  They've been doing great so far.  I wouldn't want additional surgeries no matter how well I was feeling before something as big as a transplant.  If they can control her pain so she isn't uncomfortable, that's the best thing.

Fortunately she has only had one really really painful attack that lasted at least 12 hrs, and two lesser attacks that only lasted a couple of hrs. Her liver doctor says that greasy foods should be avoided as this may cause an attack. ............she has heeded her advice. All we can do is pray and keep our fingers crossed.

When my husbands platelets were low they wouldn't even tap my husbands stomach ...when inr and clotting factors its just to dangerous if its not a emergency ...they did do transplant and his platelets were low but he was at a life threating point at that time ..i was told the greater risk of him dying during surgery ....but sometimes those risk out weight the outcome if nothing was done . Its good for them to be cautious when its not necessary.....

Oddly enough I was to have a routine gallbladder removal that went super different for me. I got very ill before it happened and started to swell. When he got in there my gallbladder was 4xs its normal size my intestine were wrapped around a huge hernia and then he noticed stones in my appendix and he removed that. But my swelling kept getting worse. Due to just sheer dr not listening and to long of a story to go thru I was sent home despite severe swelling not eating going to the bathroom or anything. I got considerably sicker after 2 days I ended up in ER and my albumin was only a 1.8 and I weighed 190 with severe water retention as that is what the body does to save itself it takes from the red blood cells and stores in any fat you have so from the waste down I was a 2x and emmaciated from the waste up I was in congestive heart failure and a general mess. I was in the hosp 13 days with severe malnutrition I told them that before surg and the anesth ord STAT blood work but I woke up from surg and that was what had happened no one waited for the blood work and I just kept getting worse. I have never really recovered and I have always had auto immune problems and so has everyone in my fam both my children my son type 1 diab with hashimotos and my daughter graves dis and pcos. I hade hashimotos and now after a whole bunch of other complications since this nightmare began I have a positive ana 1:320 with a bunch of lupus symptoms but nothing else to substantiate that diag. I have fatigue I can't explain enuf. I have trouble taking a breath sometime even my organs feel tired. I finally have rheum that is listening to me and I had some blood work come back really weird my vit D is low my calcium is low and my liver enzymes are elevated. I always have pernicious anemia and I have lost over 1/2 my hair and at the rate it is falling out within 2 months I will be bald. He has just ran more blood work looking to see if my parathyroid is working and if I have AIH. It all began with the gallbladder surg. I have had symptoms of some sort for years off and on but they think the trauma of this surg has brought on whatever this is that has happened like what they term a "flare" I don't know what I have or what this is but sometimes I feel like I am dying. I only wish I was exaggerating. I have lost so much I was supposed to be off work a week and four months later feeling worse than I did when I started I would say to you if you have an auto immune issue make sure it is in total balance before you do any surgery ...... I could not have know but I worked for my prim care and she told me I had a nutrition issue and I told the anesth and I later got my hosp records and pre admission testing had a note on it showing all my levels were off asking the surg what do you want us to do about these and I still ended up being operated on Be your own advocate!

PJ555,

Sounds like you've had a horrible time.  I totally agree with being your own advocate.  I hope your bloods stabilize so they can sort out what's wrong.  Dietary issues can cause a lot of trouble.  Are you seeing a nutritionist?  When do you get your blood results?  Are they running other antibody tests for AIH? (SMA or anti-LKM-1)  Also, they can check AMA for PBC.  I'd also ask about Celiac Disease.  It's an autoimmune condition that is controlled with a gluten-free diet...don't just stop gluten in case as that will change the results of the test.  It can cause dietary issues so maybe that's where the low Vit D and calcium is coming from?

Oh yeah, I would suggest a calcium with Vit D supplement...it's all in one pill!  Ask doc what they recommend as you may need more Vit D on top of that.  It's a fat soluble vitamin so be sure to check with your doctor.

PJ, first of all, I'm very sorry that you have been treated poorly, especially by your former friend and ex-employer.  Maybe she thought she should've been able to detect what was wrong with you or has some other problem...but it isn't about you, it's coming from her and her issues.

Secondly, you have the RIGHT to ask what tests are being done and to have the reasons for them explained to you, as well as the prep beforehand and possible risks, etc.  You have a RIGHT to have the results explained to you in layman's terms and to ask questions if you don't understand.   You also have the RIGHT to have your meds explained to you, and the reason for each.  If the doctor doesn't tell you the possible side effects, ask the pharmacist who fills the Rx's.  They are sometimes better than doctors at explaining drug interactions, etc.

If the doctor seems rushed when you want to ask questions, simply say "Wait.  I have some questions."  That should stop him in his tracks.

Regarding blood work results, at Mayo the doctor has them within 3 hours.  If yours are done at an outside lab, it could take up to 5 business days.  When your doctor has the results, ask for a copy.  You have a RIGHT to your medical records and that is part of your records.  You may be referred to Medical Records and have to pay a fee (usually $1-$2 a page.)  Be sure the lab results are given to you verbally and each one is explained to you in a way you will understand.  If you don't understand, say so!

If the doctor takes the time to explain things to you thoroughly, be sure to thank him for his time in explaining everything.  Doctors love acknowlegment of the good job they are doing.

In this age of managed care and doctors being overloaded with patients, time is really short.  Don't allow yourself to be pushed out the door before your questions are answered and everything explained to you.  It is your RIGHT!  You have to be very proactive in your care.  This will give you a sense of control and your anxiety will lessen.  Be firm and stand up for yourself, without being aggressive or demanding.

Is your hair falling out from the AIH or from the meds?

Hugs,

Connie

PJ, I was scared about the endoscopy and colonoscopy, too.  In fact, I'm in my 60s and had managed to avoid a colonoscopy until I was going through transplant eval.  The worst part was drinking the colonic...it's a lot to drink.  You won't be on the toilet all night if you start it early--like right now.  As far as the tests, I don't remember a thing.  No pain at all. I think they gave me Versed, which is a mild sedative with the great side effect of amnesia.  These tests are really important for a liver patient.  The doc will be able to tell if you have any varices that need to be banded (which would be done while you are still under.) 

So PLEASE go ahead with the prep and testing.  The tests themselves are a breeze.  I didn't have anyone with me...just had someone pick me up afterwards so I could get home quickly.

Hugs,

Connie