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debbie
Member
Username: Dededew

Post Number: 13
Registered: 08-2007
Posted on Sunday, March 27, 2011 - 09:10 pm:   Edit Post Delete Post Print Post

My sister in Law Molly is in end stage liver disease. She has had so many problems. She is on the transplant list in Oregon. They will not allow living donors here. She has been in and out of the hospital for the last 5 years and has continued to go down hill. I have been involved before with end stage liver problems as my brother died from it in 2004. My sister in law is 56, her meld score is no at 18. However she is never up, she sleeps all the time and is very very weak. Her disease was caused by medicine for bipolar and diabetes. Last week she was hospitalized for 5 days because her fluid that keeps building up was infected. This is the first time this has happened. However I am now wondering is this has happened before and this may just be the first time that Kaiser has found it. The reason I say that is because I have seen the result of high ammonia in my brother many times, but with Molly she ends up completely out of it. Many times not even being able to talk. She has been pretty much out of it for the last two years. Two years ago she was very sick (at that time she was about 2 years into the disease) when they put her on a antibiotic drip her mind cleared up better then she had been in two years. Now this time same exact thing. First for the past two years she hardly knows what's going on. She takes her lactolose faithfully, given to her by her husband, but still she is always confused. I am wondering is she is always having an underlying infection because every time she is on an antibiotic drip for a week she acts mentally like she did before getting so sick. We don't know when her turn will come up on the transplant list. She has been approved but they are saying that her MELD score has to be 22 before she is consider. I don't know if she will last that long or not. Now she's been out of the hospital for 2 days and she has a rash on her tummy and chest. They are little red dots covering the whole front of her. Anyone know anything about this and any advice getting her moved up the list because one of these times we are going to lose her?
papillonbleu
Forum Leader
Username: Papillonbleu

Post Number: 1938
Registered: 10-2007
Posted on Monday, March 28, 2011 - 08:29 am:   Edit Post Delete Post Print Post

I once had a rash develop on my abdominal area pretransplant and I believe it turned out to be cellulitis. I hope that the doctors can figure out what her rash is being caused by so she can get treated for it. I had to get a new liver as part of a larger multivisceral transplant because the nutrition I was dependent upon, TPN, was damaging my liver. I am afraid that I did not experience the main issue that you are describing for your sister, so I can not offer any advice. However, my heart goes out to you both, and I sorry that your sister has had and continues to endure so much. I hope she will not have to wait much longer for a transplant. I will be sure to keep you both in my thoughts and prayers. Many hugs for you both.
Bobbiejo
Forum Leader-Multivisceral
dx: GERD 1995, gastroparesis 2002, pseudo-obstruction of the bowel 2004
multivisceral transplant, 6 organs, 10/06/05
University of Miami/Jackson Memorial Hospital

Mariel
Member
Username: Mariel

Post Number: 58
Registered: 02-2008
Posted on Monday, March 28, 2011 - 01:49 pm:   Edit Post Delete Post Print Post

When my kids got pinpoint red dots on their torso, it was Scarlet Fever, basically Strep Throat run rampant. It is an infection trying to eradicate itself through the skin pores. Not saying this is it, but definitely have it checked out.

In addition to Lactolose, my Huz also takes Xifaxan, an antibiotic for bacteria in the colon. It helps with clearing out the toxins that cause encephalopathy (brain confusion). It is expensive, $700/month for us, but combined with Lactolose, it has kept Huz thinking clearly and still working.

You might also check with the doctor about diuretics to remove the fluid so that it does not have a chance to become infected, especially in the lungs (wide-open space for water to collect and turn into pneumonia). Huz is on Lasik and Amiloride (a diurectic booster).

Is multi-listing at another lower MELD tranplant center a possibility for your family? I know the inconvenience is a big factor, not to mention re-testing costs, but it may take your SIL to transplant sooner, and back to old herself. Our insurance allows for listing at 2 transplant centers.

Best wishes, I'll be praying for your family.
Mariel, wife of PSCott
www.caringbridge.org/visit/scottcarr
surviver
Member
Username: Intlmech

Post Number: 9
Registered: 05-2011
Posted on Tuesday, May 10, 2011 - 12:32 pm:   Edit Post Delete Post Print Post

debbie sorry to hear about your sister in law,i was in an out of the hospital more than at home for confusion,idon't remember a lot but was told i was a mean person during this time,i was seeing bugs crossing in my eyes and double vision.6 months before transplant,my meld was 18,4 months later at 30 and yellow everywhere,no hair below my neck.i was lucky in that i had a lot of people praying for me plus ab+blood type.i can tell you to press her doctor,he is a liver specialist right,if not see one now.the comments above a great advice.i'm 3years transplant and now 57 and happy with my borrowed time.if you can do some little things for her as in visit a lot,cards help.a good friend is the best medician she can get.
transplanted june 2008
debbie
Member
Username: Dededew

Post Number: 14
Registered: 08-2007
Posted on Friday, June 03, 2011 - 10:42 pm:   Edit Post Delete Post Print Post

update, we are in real bad need now. Molly is number 6 on the list and is mostly out of it now. She is weak and at most times doesn't even know her husband and sons now. She is being tapped from time to time and is in and out of the hospital. OHSU is still saying that whether or not she lives long enough to get a liver is unknown. I went to see her today and am very concerned. She has a gray tint to her skin, not just yellow, like the last time her fluid was infected, but gray. It's on her stomach and her legs. Any other advice would be great appreciated. I am stepping in now and helping her husband with finding out what we need to do. She is weaker by the day, I think she may be dehydrated as well. Her skin felt so dry and looked wrinkled to me. I am wondering if he should take her back into the ER. They have kaiser and last month when he took her in they said that he could do the same for her at home as they were doing in the hospital, but I think her husband is so depressed and not really giving her the care she needs now. He needs more help and so we are going to step in now.
papillonbleu
Forum Leader
Username: Papillonbleu

Post Number: 1992
Registered: 10-2007
Posted on Sunday, June 05, 2011 - 01:27 pm:   Edit Post Delete Post Print Post

I do not feel qualified to give you advice, but I will make sure to keep you and Molly in my thoughts and prayers. May you be given the wisdom to know what best to do for Molly's sake, and I hope she can make it until she can get a transplant. Many, many hugs from the depths of my heart.
Bobbiejo
Forum Leader-Multivisceral
dx: GERD 1995, gastroparesis 2002, pseudo-obstruction of the bowel 2004
multivisceral transplant, 6 organs, 10/06/05
University of Miami/Jackson Memorial Hospital

health journey
Member
Username: Health_journey

Post Number: 13
Registered: 04-2011
Posted on Sunday, June 05, 2011 - 03:21 pm:   Edit Post Delete Post Print Post

I had the encephalopathy you described and on days that it was really bad, I took extra lactilose until the confusion started to clear. Sometimes every couple of hours for a day or two. The lactilose is supposed to empty your stomach and intestines which relieves the ammonia levels in the body. The last 3 months before my transplant I hardly knew who I was most days and hardly left the house. I was super tired also but I got up and stayed in a lounge chair most of the day to see my surroundings and any activity in the house. I can't speak for the antibiotics. I had to get them intra venously for 3 weeks because I developed sepsis and pneumonia. All side effects of the disease I guess.

Hang in there and encourage your sister in law to think positive. I used to picture myself with a new liver feeling healthy again. My husband kept calling the center to speak to my case worker and Dr. just to remind them how I was deteriorating. I finally got the call and after the surgery kept getting better and better. I am now 20 months post surgery and doing very well.

I'm surprised the meld score is keeping her from getting a liver. It's only one of many factors. My meld score was 18, then in the 20's and at times would spike higher then go down again to the 20's. It seemed to fluctuate when I would get the bad episodes but those times I did go to the ER so scores were kept during my bad times.

I don't know what else to tell you. It's good you are helping. We liver patients absolutely need an advocate because we get too sick and weak to help ourselves. Someone has to keep pulling for us. Have you looked into another center. I was only listed in one but others have tried to use more.
Meagan
Forum Leader
Username: Newheart14

Post Number: 1919
Registered: 01-2009
Posted on Sunday, June 05, 2011 - 04:02 pm:   Edit Post Delete Post Print Post

Hi Debbi,

I don't know much about encephalopathy I'm afraid, but my advice about when to visit the ER, would be to go if you are feeling the need to go, because all they can do is send you home. If your sister-in-law is dehydrated she may need some IV fluids.

You are very wonderful for stepping in and helping out your sister-in-law. Her husband sounds like he may be overwhelmed and he may need some help himself. Do you think he might be depressed? It's true what Health Journey is saying about being too sick to fend for yourself and needing someone to speak for you at times.

Wishing you, your SIL and her husband all the best. Please let us know how she is doing.

Meagan
Heart-Liver Transplant - February 14, 2008
TGH, Toronto
Cardiomyopathy 1991/CHF
ono
Member
Username: Ono

Post Number: 135
Registered: 06-2009
Posted on Wednesday, June 08, 2011 - 01:43 am:   Edit Post Delete Post Print Post

I had to take lactulose for encypalopathy or I got delusional too.
Since she is already so close to getting her transplant, I don't know what else you can do.
If it makes you feel better, when I had my transplant, the doctor said I was living on only 8% of my liver and would have only survived another 6 weeks.

This is a bit of a morbid story but its true. We know a man who had been told to go home and prepare for the end nothing more could be done. He was very sick but his meld score was too low.
Then his neighbor's 18 year old had a fatal motorcycle crash. Despite her sorrow, the mother insisted that the boy's liver be given to this man. That was 7 years ago and he's doing great.
The moral is you never know what might happen.

Good luck
mrmajestyk
Member
Username: Mrmajestyk

Post Number: 36
Registered: 11-2010
Posted on Wednesday, June 08, 2011 - 06:32 pm:   Edit Post Delete Post Print Post

I was 430 pounds and my Meld Score was 32, I lost weight and I recommend that you do what you can to get her to Mayo Clinic or Cleveleand Clinic. I saw people that by all rights were practically dead and they came through. Sodium was the key to me losing weight and getting rid of fluid
Hope is the feeling you have that the feeling you have isn’t permanent. -Jean Kerr
surviver
Member
Username: Intlmech

Post Number: 15
Registered: 05-2011
Posted on Thursday, June 09, 2011 - 03:45 pm:   Edit Post Delete Post Print Post

debbie
listen she still has time.keep up the good work,as others have said.they drilled ahole through my liver and by passed it.needless to say i'm dieing fast now,started seeing things going through my eyes and was delirious,in and out of consciousness,if my wife didn't feed me they would have let me die of starvation,by all means take her to the hospital
and let them observe her,i was in the hospital more than home in my last 3 mo. before transplant.hang in there it's never too late till her last breath is breathed.god bless and hang in there
transplanted june 2008
debbie
Member
Username: Dededew

Post Number: 16
Registered: 08-2007
Posted on Thursday, December 15, 2011 - 02:18 am:   Edit Post Delete Post Print Post

Bad news guys, and not sure where to go from here. My brother in law just called crying. He said that Molly had a MRA yesterday and that on the side view they are seeing a white area. They said it happens sometime to some people and that it may be necessary to take her off the transplant list because she might not improve mentally with a transplant and that there was no way to know for sure. They are having a meeting tomorrow with her team at OHSU to decide whether or not to take her off the list.

I can't believe. Yes she is worse, yes sometimes, (most times it takes her a while to answer, sometimes she doesn't answer, she is falling a lot and have hurt herself by falling. But just take her off the list. They are saying that there are people who need a liver that will have a better life then she will. They said this right in front of her and she cried so hard and said so now I'm useless. This was not the way to be told, and how can they just decide to not help her now. What options should we try and any advice. This will be a death sentence if we don't get a transplant. She is very very very sick.
debbie
Member
Username: Dededew

Post Number: 18
Registered: 08-2007
Posted on Thursday, December 15, 2011 - 02:40 am:   Edit Post Delete Post Print Post

Sorry I left off that this was a MRA of her brain.....
brismom
Member
Username: Brismom

Post Number: 33
Registered: 03-2008
Posted on Thursday, December 15, 2011 - 05:39 am:   Edit Post Delete Post Print Post

Hi Debbie
I'm so sorry to hear about what your sister in law is going through along with you and her husband. It sounds to me that her center is very insensitive and cold. If at all possible call Indiana University or Clarian or Methodist hospital in Indiana. They may be the same entity, not sure but I have heard in the past that they have a short waiting time. Also University of Wisconsin might have a shorter than normal waiting time. It's worth a try and you might be able to get some help through a social worker or the America Kidney Fund or elsewhere. Ask others here on Transplant Buddies as they might have the answers. Wish I could be more help but I will be praying for all of you....good luck.
Brismom
brismom
Member
Username: Brismom

Post Number: 34
Registered: 03-2008
Posted on Thursday, December 15, 2011 - 10:04 pm:   Edit Post Delete Post Print Post

omg I accidentally put Kidney Fund when I meant to say Liver Foundation Please excuse my error

Brismom
debbie
Member
Username: Dededew

Post Number: 19
Registered: 08-2007
Posted on Thursday, December 15, 2011 - 10:35 pm:   Edit Post Delete Post Print Post

Well, the call came, they have officially taken Molly off the liver transplant list. They said that they will send her information to San Fransisco because they have a specialty department there regarding this, but we are hoping that Oregon has not just sent us on a goose chase and it is a cop out. They said that the liver has caused to much damage and that a transplant is not longer going to make her well. They also said that because there is a shortage of livers that even though it is very hard to make these decisions, it is necessary to be sure organs go to those who will benefit from them, but how can they know that she won't.
Please pray for us, this is such terrible terrible news. We have waited 8 years to get to this point of transplant. To be 6th on the list and now officially taken off is too much to bare.
ono
Member
Username: Ono

Post Number: 147
Registered: 06-2009
Posted on Friday, December 16, 2011 - 10:04 pm:   Edit Post Delete Post Print Post

I know they have excellent care at UCSF. A friend is on the list, he has cancer and hcv. His doctor is confident they can help him.
If you can afford to move her to S.F., I know she will get the best care.

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