End Stages Questions

[lpapp001]

Hi,
I am the oldest daughter of a 62 yr old lady with End Stage Liver Disease. She has been on a transplant list for over a year. Her condition is complicated with diabetes (she has had for 20 years). I feel like a yoyo... She is on the list as long as she is stable,,but she keeps developing infections and then is inactive. She has had 3 hospitalizations this year... 2 within the last 4 months. Each put her in ICU and twice on a vent. She is getting very tired.. I do not know what to expect next... I've been searching for information but it is confusing.
I think she may be giving up the fight. She is saying she's not sure anymore.  It's tough... she's getting weaker... Where can I look for more information? I've looked at Hospice sites some,,but I don't know that we're there yet. This is an awful disease. If she decides to quit,, should we beg her to fight? I'm so confused... Thanks for any information..

Sincerely,
Lavonne

[LvdByGod]

my mom died last year of liver failure. it was a very hard road. three things; i would have her sign a living will, this way she gets to make her own decisions reguarding life or death issues. my mom refused to sign one which put us children in a horrible position trying to decide what she would want after she went into a coma. two, i would put her on hospice as soon as you realize it is not a possibility to be cured. this way the nurses can suggest medicines to help her feel better like moraphine etc... that they wont give her unless she has hospice and a living will.
my mom went thru alot of pain in the end needlessly. they kept telling me to get her on hospice but i was afraid that meant they would give up on her.i didn't understand that she was not going to make it so i kept them trying everything . my mom had some mental illness which caused her to be uncoperative with the dr.s. she wouldn't even allow them to do a biopsy. so i think this is why they gave up on her.

but, your mom sounds like she is not that far along so i would do everything you can think of while she is still able to be qualified for a transplant. check into a living donor possibility, as well as waiting on the list. thank goodness she could be put on the list, they didn't even talk to us about that possibility.  i pray that a liver will come up for her while she is active on the list. i don't know of any websites for living donor. but perhaps someone else here will know or you can do a search. you will be in my prayers. i know some of what your going thru, reach out to the Lord for help and comfort for you and your mom. God bless you both, sandi

[lpapp001]

LVDBYGOD!!!

Thanks for your comments.  They were very helpful. I guess I'm fortunate... my mom does have a living will... She is becoming so non coherent at times though... and she's revelling and seeing people who have passed on...I guess that's part of it too...
I'm sorry to hear your mom didn't make it.... Reading the comments helps to know we're not alone...  I guess it's really just a day to day journey...and we do have a strong faith... without that I think I would have gone off the deep end...

Thanks again...
Lavonne

[Bodie]

Hang in there! My brother in law passed two years this coming X-mas and he was uncooperative at best. I go to a transplant center in OK and there is a way to give a living transplant! Get your family together and have them tested. If one of them matches her, they can donate and you will have the best chance of a match if it comes from family. My sister, her son and my two sons are all I have to go to for a living transplant, but they are staying healthy, just in case I need it. I am truly blessed with the family I have left. Your mother is still young.
I know that it is hard to sit back and not know what to do. Hang out on this board for a while and you will find more support than you ever knew was out there. We are a fun-loving bunch, but we will always be there if needed.
Good luck to you and your Mom. We will all be praying for her. She has a good daughter that is looking out for her. Stay strong for her.

[jonihs]

My sisters have also checked and 2 match and will donate if it comes to a transplant. I think living donor transplants have a higher success rate also.     Joni

[new-sojourn]

I urge you to find a MD who will treat hep c in ESLD. My life is nite and day in the difference of QOL.  Even w/transplant, you still need to fight the disease.

I was so lucky to get in a study for over 50 ESLD and ability to treat.  Being totally healthy, except for hep c, I was accepted since I wasn't going to live anyway.  Well, they tested @3wks into 24wks and I had already cl!  Its been  better and better ever since, where I'm much to healthy for a transplant now, even if I had insurance or not.

My mantra is "Its never too late to treat."  

[jonihs]

I am seeing a wonderful G.I. now, I meet w/ shrink tomorrow, am set up w/ a local internist, and will get final tx. dec. on the 27th. Am feeling very hopeful, anxious, excited, all that stuff!  Thank you so much for caring. Mikesimon got me started down this road 4 mos. ago and I thank God for him everyday!

[mikesimon]

I just want to say how happy I am that things seem to be falling in place for you. You sound so positive and strong. And, of course, the support of family and friends can make all the difference. Please keep us posted. Good luck. Mike

[mikesimon]

From Medscape Oct/2003
Living Donor Liver Transplants Offer Fewer Complications Than Cadaveric Organs


Reuters Health Information 2003. © 2003 Reuters Ltd.
Republication or redistribution of Reuters content, including by framing or similar means, is expressly prohibited without the prior written consent of Reuters. Reuters shall not be liable for any errors or delays in the content, or for any actions taken in reliance thereon. Reuters and the Reuters sphere logo are registered trademarks and trademarks of the Reuters group of companies around the world.



By Megan Rauscher

NEW YORK (Reuters Health) Oct 13 - Living donor liver transplantation (LDLT) is associated with a lower rate of serious complications and rejection and may have a slightly higher survival than orthotopic liver transplantation, according to intermediate term morbidity and mortality data from 92 patients who underwent LDLT at the University of Rochester in New York between 2001 and 2002.

The study represents the largest single-center study of LDLT in the U.S., Dr. Parvez S. Mantry told Reuters Health. He presented the results Monday during the 68th Scientific Meeting of the American College of Gastroenterology in Baltimore, Maryland.

"From the donor standpoint, we published data separately showing that it is an extremely safe procedure," Dr. Mantry told Reuters Health.

In the current study, most recipients tolerated the procedure "very well," he said, with 86% not experiencing any significant complications, and the survival rate was "pretty good," with 92% of patients alive at 6 months.

"Although I published just the intermediate term mortality, we are seeing that patients who underwent LDLT even two or three years ago are for the most part doing quite well," Dr. Mantry told Reuters Health.

The biliary and vascular complication rate for the Rochester LDLT cohort (6.7% and 2.2%, respectively) is lower than that reported nationally (22% and 9.8%, respectively), the research team notes in a meeting abstract.

"The only condition where we have to be a little watchful, and again that is evolving, is chronic hepatitis C," Dr. Mantry said. "These patients may have a higher morbidity from LDLT although that data is not yet completely assimilated."

"LDLT, from my perspective as a hematologist, is a very good alternative to cadaveric liver transplantation mainly because the shortage of organs is so great," Dr. Mantry said.

New York State has the largest waiting list in the country but the least number of organs supplied from cadavers so there is a "huge gap between supply and demand," he explained, "which is why we like to bank on living donor liver transplantation."

Dr. Mantry said he believes that LDLT is "certainly going to catch on and will definitely be a large part of liver transplantation in the future."


--------------------------------------------------------------------------------

[imkindly]

Hi Lavonne
I have some nosy questions for you (hope you don't mind)-

---Which center is your mother listed at?
---What is her MELD score right now?
---Have you asked the doctor what the average MELD score for transplant is (at THAT center, for HER blood type)?

I understand the frustration when an infection appears and a person is put on the "inactive" list.....but you need to realize that that is very Temporary. As soon as the infection subsides, they are put right back on the active list.
(The reason they do that is---it's very dangerous to operate on someone with an active infection.  And---when a person gets a transplant, they are immediately put on immunosuppresants (to avoid rejection)....which would allow an infection to get much worse)

Do they have your mother taking a prophylactic antibiotic now? (To try to keep her safe from infections...until transplant)

You need to stay positive.
Be strong and optimistic around your mother.
No matter how discouraging this can get, you need to stay optimistic IN FRONT OF YOUR MOTHER.
Psyche yourself up, and say positive things to her. (Tell her how great it will be, once she has this all behind her. Tell her how much you admire her strength. Tell her to keep her eyes on the prize....look ahead....how great it will be once she gets her new liver.)
Remember----as discouraging and scary as this is for family, it can be even scarier for the person who is sick. You need to be a positive influence IN FRONT OF HER.

Attitude means alot, and if you show her hope and optimism, it will help her alot.

We have a support group over at
http://forums.delphiforums.com/liverfailure/messages

My homepage is at
http://www.expage.com/cirrhosis

I hope you'll visit. You can meet others there that are waiting for transplant, and some who have already had their transplant.

[jonihs]

Once again Mike, thank you,and God Bless you.  I'm off to see the "shrink" now.       Joni

[lpapp001]

Thanks so much for your response... and all the others as well... wow!  To be honest with you... my sister is an RN..and I don't have the MELD but I can find out...
She is working through the transplant team at the University of Florida and Shands Hospital at Gainesville, FL.  About a year ago she had the TIPS procedure done after having to spend 10 days in the hospital for the acities.. The fluid was awful... they drained it several times.(several liters).. After the TIPS was done she did good for about 6 months...she hasn't had build up of the fluid again...She had an ear infection which went to the bone. She was treated for that with antibiotics. She was off the antibiotic 2 weeks when this last hospitalization occurred.  This time her blood pressure spiked and they found she had a strep infection in the blood.  In between these she seems to keep a UTI... She is O+ on the blood ( I think) .  As far as live donors.. I know my youngest sister investigated the option but we were told that would be a partial transplant and that the success rate was low... Is this not the case?  
Thanks again for all of your kind words.. I will keep visiting this site. :)

Lavonne

[willing]

I'm sorry this is  a very hard time for you. I found much wisdom in lvdbygod's comments. Personally, when my time comes, I hope to have the chance to die willfully and with acceptance. In a difficult disease the last thing I would want to  to deal with is my children urging me into an improbable fight I wasn't interest in pursuing.

[imkindly]

Hi Lavonne
Here are some things that you might already know:

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

There's an organ donor shortage.

UNOS (the people in charge of the transplant waiting list), want the next available DONOR LIVER to go to the sickest person on the waiting list.
So they use something called a "MELD Score", to determine how sick each patient is.

The MELD Score is calculated by using the results of 3 bloodtests:
---INR
---Total Bilirubin
---Creatinine

(If you know your mother's bloodtest numbers for INR, Total Bilirubin, and Creatinine.....you can keep track of her MELD score.)
There are MELD Score Calculators available online at:
http://www.mayoclinic.org/gi-rst/mayomodel6.html
and
http://www.unos.org/resources/MeldPeldCalculator.asp?index=98

Your mother is competing with others of her same blood type at SHANDS. (Highest Meld Score gets the next available liver)
The sicker your mother gets....the higher her MELD score will go.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Be sure to ask the team at Shands: "What is the average MELD Score to get the call HERE (for my mother's blood type)?

Using the answer they give you......and comparing it with your mother's own MELD Score, it will give you an idea of how much sicker she will have to get in order to get the call.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Shands does perform Living Donor transplants.
One of the advantages of using a Living Donor is----You could schedule the operation immediately.
(No more waiting for the MELD score to rise. Your mother could get her new liver now.....no more dealing with the waiting list.)

Shands has a link to information on their Living Donor program at:
http://www.shands.org/find/service/transplant/liver/research.htm

There's also a link there that will show you statistics.
The success rate for living donor transplants is high. (But the operation does include risks.)
If someone in your family is interested in being a living donor, they should discuss this with the team at Shands.
(Remember----no one should be "pressured" into being a living donor. It's a personal decision, that should only be made after ALL the facts have been discussed with the team at Shands.)
Also---A Living Donor can change their mind at any time.

The person interested in being a donor, also has to undergo an "evaluation" (medical tests and interviews, to see if they are a good candidate.)

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

About the infections---

My husband went through the same thing while waiting for his liver transplant.
He'd get an infection....take temporary antibiotics to get rid of the infection.......then later get another infection.
Finally (after going through this several times)----they decided to KEEP him on an antibiotic.
You may want to discuss this with your mother's doctor.
(Ask if keeping her on a prophylactic antibiotic would help)

[lpapp001]

IMKINDLY,
Thanks so much for the response.. My mom has an appointment this week at Shands in Gainesville.  If I can't get off of work to go my sister is...so at least one of us will be there with them. I will ask the questions you suggest. The information is most helpful.  I will also look at the sites you have recommended.  
This site has been a great help to me.  Thanks to all of you for your responses...
I'll let you know what we find out.