Looking for advice & knowledge

Hi,

This is my first time on this blog, I stumbled upon it while I was researching my moms conditions and was wondering if anyone here could give me some advice or knowledge. She has cirrhosis which has escalated leading to HRS type 2 now affecting her kidney, the doctors have treated her kidney but stated the damage that was done is irreversible and caused by HRS (which is a later affect of her cirrhosis, based on what I have been reading). She is on lactulose and other meds for the current time but the answer that we are receiving from her doctors is that they can only treat the symptoms and her condition is worsening by the hour she is in need of a transplant. We are currently waiting on the liver transplant center in our area to admit her for an evaluation and put her on the transplant list (supposedly they are very busy, we have been waiting on them for 4 days)... is it normal to wait this long???

Also, her current doctors and the doctors in the hospital have been running tests and lab work on her daily. Yesterday they told me that her condition is going from worse, to worse to worse. When she was admitted (two weeks ago) her MELD score was a 26, yesterday it was a 33 and it is slowly rising. Her doctor states that the biliruben result has been increasing from 3 to 6 to 9 to 15 as of yesterday... This morning the results of her liver biopsy returned confirming her at stage 4 cirrhosis, her eyes are neon yellow, her ascites is being treated by the meds but she has had about 3 fluid removals over the past 2 months. She can walk and talk all normal but seems slightly weak... Does anyone know how long we have based on the conditions that I described? I know ultimately this is God's will and only the Almighty knows when her time is up.


Yesterday they took my sister and I into a room and told us that we should consider hospice since her condition is worsening very rapidly... its like they have no hope.... I know shes just another patient to them, like any other patient that walks into their doors but I swear they make me feel like there is no passionate care... For my siblings and I we have hope and pray daily. For those that have been through what my mother and family is going through right now, I'm sorry that you had to endure any of this.

We have been calling ourselves and what we have been getting in return is, " you should not being calling us but your doctors office is and once we have an opening we will let them know". Do you know how long it takes to get someone in for an evaluation? Also how long an evaluation takes?

P.s.

Is mom seeing a hepatologist? I don't like that the hospital can't give you an approximate date for eval. What does your mom's doc say about all this.

I'm glad you have your sister to lean on. I know how hard it is.

Have they discussed dialysis?

HRS is HepatorRenal Syndrom: Cut and paste into browser, I can't make it click, sorry.

http://en.wikipedia.org/wiki/Hepatorenal_syndrome

It is very serious and can take those affected quickly.

Chicago is VERY busy.

Unfortunately the centers use some statistical indices to choose who does and does not get on transplant lists. They want to use the too few donor organs on the folks who are the sickest BUT also are the most likely to survive

It is tricky with some additional problems. If a person is so close to death that the surgery would kill them, they don't get the next liver...those with advanced cardiac problems, for example.

Those with advanced cancers who cannot be controlled with chemoembolization, are passed over.

And folks with some kidney issues are not considered eligible either.

But there are plenty of folks on dialysis who DO get transplant, even double transplants liver and kidneys the same day!

So the wait is not exactly like getting on line, first come first served.

You need to be drug and alcohol free, and a non smoker. If she has been a drinker, she needs 6 months of documented sobriety.

If they tare talking hospice are they truly saying that no matter what your loved one is not a candidate for transplant? How sad.

Has this all come on suddenly? My partner, Mike was sick for years before he got into a TP program. He was at 24 in October 2010, had to be 6 months sober...he was transplanted just days over that deadline. IF he had not lasted the 6 months that would have been it... he would have died and they would not have budged.

Have you medical insurance issues? If you need to apply to Medicaid or SSDI be sure to look after that right away also.

Let us hear from you again later,

Mama Lama from Florida, where they TP at 22 - 24 MELD.

Ok our posts crossed Carol. I sure hope they can fix her up!

Thanks for the good info. Amazing you did all that on your phone.

Yes Tslick, just keep up the good advocation for Mom, sometimes things DO work out well after all.

TS, remind me, she is In Loyola hospital or somewhere else?
We took Mike TO the hospital where they do the transplants to the ER one day during that horrible 6 month WAIT. He had kidney failure, that crazy low sodium thing (hyponatremia), crazy GGTP, crazy potassium, and just plain crazy (HE), and his legs were as big as oak tree trunks.

The Hepatologist on duty took a shine to him and did most of the evaluation while they were pumping him full of blood products and albumin and trying to avoid dialysis. That Doc was our savior...he couldn't stand that Mike was just waiting around and the evaluation wasn't ongoing...so they started to do the stuff...he was funny actually...hollering at people in the hall. His PA was fantastic. We still keep in contact with her.

Though the hospital is 2+ hours from our house, we always go to the ER there unless he isn't breathing (so far so good). When you are on their door step it is easy for them to stop by and get emotionally attached to your case....you aren't a number or a paper file anymore.

Thinking of you.
MamaLama

Mae: I am at my PC this afternoon...not such long posts from my phone.

Post Edited By Moderator (hep93) : 7/18/2013 4:44:08 PM (GMT-6)

Shes at another Hospital now that does not do TP, her doctor there is trying to get her to get into Loyola.

Absolutely! I assumed she was there. That would be best and like Carol said, when you're facing them in person it's ever so much harder not to help her.

I wonder if it would help to go to Loyola yourself and try to get them to accept her at least for eval. Or if her doc has any pull with loyola, lay it on him if you trust him. Meanwhile, as David said, try another TP hospital in your area. Be sure that they know that time is of the essence!

I will see if I can find a TP center other than Loyola.

We were just told by the nurse that Loyola is admitting her today.... Thank God that the process is finally moving along. Thank you all for your replies and support!

Hi, TSlick. I just wanted to welcome you to the forum. It's GREAT that she is being admitted to Loyola! That should get the TP evaluation started. And if things don't move fast enough, get her dual listed.

Please do keep us updated.

Hugs,
Connie

HRS is perhaps one of the most awful sequelae of cirrhosis. In many cases, it is the collateral circulation that is altered causing the kidneys to fail. However, it can also result in acute tubular necrosis, which then requires a double transplant. It sounds as though this might be the case.

Dialysis is always an option as the creatinine continues to increase but there is the cruel issue of coagulopathic risk to throw into the mix. With the kidneys causing the liver to fail and vice versa, the INR worsens to the extent that insertion of a high-flow central catheter in order to administer the dialysis becomes so risky in terms of its potential for haemorrhagic shock that it is only considered once the transplant evaluation has been completed. Dialysis in HRS is seen as a bridge to transplant. Unfortunately, in the vast majority of cases the only other exit route is the one we fear. A combination of terlipressin and albumin has been shown to be effective in treating the HRS, both through volume expansion and associated perfusion, and vasodilation.

My uncle had type 1 HRS secondary to cirrhosis (alcoholic) and they would not catheterise him for dialysis because his INR was nearly 3. Had he been in with a chance of a transplant they were willing to do it, but this not being the case given his rapid deterioration the doctors felt that it was kinder to avoid invasive catheterisation which carried with it a risk of death anyway.

Time is almost certainly of the essence and I wish you the very best of luck.

Glad you mentioned terlipressin. I just read on An old post, how that drug was quite effective.

When you get a chance ask the doc about terlipressin, can't hurt to put it out there.


Please keep us updated :)