Join Our Mailing List
Email:
Visit our blog  Find us on Google+  Find us on Pinterest  Like us on Facebook  Follow us on Twitter

 

Safe Eggs
Log Out | Topics | Edit Profile
Forum Archive
 

I'm new and have a few questions... Log Out | Topics | Register | Edit Profile

TransplantBuddies.org Forums » Liver - Multivisceral » I'm new and have a few questions... « Previous Next »
Author Message
Stephanie
Member
Username: Casmr36

Post Number: 1
Registered: 04-2011
Posted on Saturday, April 09, 2011 - 02:02 am:   Edit Post Delete Post Print Post

Hi, my name is Stephanie. Back in February my husband and I found out that he has Auto Immune Hepatitis and Grade 3 Esophageal Varices , and that his liver is very cirrhotic and that he may need a liver transplant sometime in the near future. This was very shocking and upsetting news seeing as we both only recently turned 21.

One of my questions is about a living donor transplant? What exactly qualifies you as a match to someone?

And another question I have is what I can do for him? I feel so bad when he's getting sick in the bathroom or just feeling nauseous I don't know what to do and I feel so helpless...
Joe Berry
Forum Leader
Username: Joe910

Post Number: 256
Registered: 08-2008
Posted on Saturday, April 09, 2011 - 10:53 am:   Edit Post Delete Post Print Post

Stephanie,

I am sorry to hear about your husband. You can get specific information from this website: http://www.unos.org/donation/index.php?topic=living_donation

Different transplant centers may have somewhat different criteria. The two criteria that I am aware of are the donor must be close to the same body size so that the livers are close to the same size and the blood types must be compatible.

Be there for him. My wife was my angel. Sometimes just being there was all that I needed/wanted. Let him know you are there for him- he'll let you know what he needs. This is all new and strange to him also. At times I could be short with my wife because I felt lousy. I would always catch myself and make amends, but it is new and stressful for both of you. A caregiver's role is much more stressful than the patient's in my opinion. Patient's have a support network, caregiver's do not.

Good luck on your journey. Please feel free to ask questions.

I had a liver transplant 10/17/2007 and feel better than I have in years.
Joe Berry, Peoria, IL USA
Forum Leader
Diagnosed with PSC and UC in 1990
Liver Transplant 10-17-2007
Northwestern Memorial, Chicago, IL
Joe Berry's Helpful Healthcare Hints
blog on TransplantBuddies
papillonbleu
Forum Leader
Username: Papillonbleu

Post Number: 1956
Registered: 10-2007
Posted on Monday, April 11, 2011 - 08:23 am:   Edit Post Delete Post Print Post

Dear Stephanie,
Welcome. I am sorry that you and your husband are going through such a rough time. I do not know anything about live liver donation. As a recipient though, I can tell you that the most important thing to me as I was on the waiting list and recovering from the surgery was simply knowing that my family would be there for me when I needed them. Sometimes they did not even need to say a word, but just simply be near by. It also helped that they would listen. Having good communication was important. Perhaps you can do little things to surprise him, such as writing a letter or signing a card for him to find unexpectedly. Sometimes it is the smallest acts that can really mean a whole lot. I also think you need to consider finding a good support system for you also as this process can be difficult and stressful for both sides. You need to keep in the best health physically and mentally so as to deal with all this better too. Perhaps you could have others help you out once in a while or allow to have a break or get support from church groups or other local groups if possible. Trying to find out as much as you can about the whole process and reaching out to others too as you are doing now, I think can help. I know it helped me to hear from others who had gone through something similar and it also helped my parents too who were my major caregivers at the time. I will be sure to keep the both of you in my thoughts and prayers. Many hugs.
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

TinyAnn
Member
Username: Tinyann

Post Number: 10
Registered: 07-2010
Posted on Wednesday, April 13, 2011 - 06:06 pm:   Edit Post Delete Post Print Post

Hi Stephanie. I too am a caregiver to my fiance that is in need of a liver transplant. We have ups and downs with the process and his health is always in the forefront in all that we do. Caregivers have it so much harder than the patient does at times. We need to always be there for them when we are needed but also when they push us away. For my fiance i have given him little encourgement cards telling him how well he is doing especially since he had to loose 60 lbs just to be placed on the active list. Since August to today he has lost over 80 lbs. I also did alot of research on the subject of liver disease.
I know thru Hershey Hospital where we are currently going to for one to get a live donor liver the person has to relatively the same size and blood type. Also it has to be someone that we are very close to emotionally.
You need to be sure you take time for yourself as well. That was so hard for me to do at the beginning. I was afraid if I left him in someone elses care that something would happen to him. I had to learn to let go and go and do something just for me whether it be a day out shopping or a movie or even go to the library and read a book there.
We also got on the internet and hooked up with the Gift of Life program here in PA. They are wonderful people. Each state has a procurment office that offers support and meetings. We attend the GOL meetings every month and they are a true god send. We get to talk to people going thru the same thing we are currently going thru or people that have already had their surgery and are months to years out on their "NEW" birthday. I learned at the last meeting that if the caregiver is not healthy the patient will not be healthy. Caregivers suffer from depression as well as other diseases because they do not care for themselves. I know you want to do all you can for your husband but please take a moment and take care of yourself as well.
Both my fiance and I are also in counseling. This is mainly for my benefit because I have and had a hard time dealing with his situation. He was almost killed in 95 in a tractor trailer accident and they gave him alot of tylenol based pain killers. Now due to those meds he is in need of a liver and possibly a kidney transplant. I am so angry at times because he is so sick but then i think God has a plan for him. He did not die back in 95 when he should have and there is a reason why he is still here with me today.
Every day is a challenge but with help and family and friends you and your husband will get thru it. If you ever want to talk directly to me I can be reached at ccamb861@comcast.net.
Good luck to both you and your husband. I will be saying a special prayer for you both.
mike
Member
Username: Tatlormichael

Post Number: 2
Registered: 04-2011
Posted on Wednesday, April 13, 2011 - 07:19 pm:   Edit Post Delete Post Print Post

Hi, Sorry to hear about your husband. I was lucky enough to be a doner for my 9 month old daughter 2 years ago in may. Blood type is the first test you need and it does not matter if you are neg or pos. {i was o pos she was o neg} Iwas 200 lbs she was 11lbs and they made it work. For an adult they take the right lobe {its lager} and for a child they take theleft.We spent her first 9 months in and out of the hospital with ng tubes and pic lines so i know how difficult it is to watch a loved one get sick. I know a bit about the doner process so if you have questions just ask. She is doing great so keep your chin up and know it gets better. good luck ,Mike
Liver Giver
Forum Leader
Username: Beteboop

Post Number: 826
Registered: 10-2007
Posted on Saturday, April 16, 2011 - 08:20 am:   Edit Post Delete Post Print Post

Hi Stephanie,
I am so sorry that your and your husband are going through all this. You have found the best place here at transplantbuddies for encouragement.
We have all been affected by liver disease in some way being a patient, donor, caretaker and loved one.
It is very difficult to watch someone you love as they are ill. Counseling, which has been suggested here, is very important. With all the ups and downs learning good, productive coping skills are your best defense. Remember that you MUST take some time for just YOU! Caretaker burnout is a huge problem and I hope that you have family and friends that will be there to help you.
Please keep us updated. I shall keep you in my prayers.
Dawn
Forum Leader Living Organ Donation
Liver Donor 11/19/07 to brother Anthony

Good and bad things happen in life, but what matters, what defines us, is how we handle them
ono
Member
Username: Ono

Post Number: 133
Registered: 06-2009
Posted on Thursday, April 21, 2011 - 04:56 am:   Edit Post Delete Post Print Post

Hi,
I was also shocked when diagnosed though a lot older than you both.
I had a transplant two years ago.
My daughter was my live liver donor.
In order to donate, there are a series of tests we both had to do.
The first has to do with blood type.
Also, because he's young, it'd be best to have a donor close in age.

There are dietary things you can do to help though this is all about dealing with symptoms, not the cause.
Ginger tea may help with nausea.
Have him eat as close to a no salt diet as possible.
Read labels, avoid additives.
Stay away from red meat and anything high in iron.
Simply put, the best thing is to eat as healthy as possible, meaning organic fresh food.
The idea is to make it easier for the liver.The liver filters everything you eat and breathe.

Good luck and feel free to ask me anything.
Ono
GOOSE
Member
Username: Goose2903

Post Number: 5
Registered: 03-2011
Posted on Saturday, April 23, 2011 - 09:01 am:   Edit Post Delete Post Print Post

Hi , I hope I can clarify some things for you. I am a live liver donor , 45 yr old male , who donated 69% of my liver to my father in law 2 months ago. The first criteria for donation is blood group, must be the same. The donor must be between 18 -50 yrs and be relatively healthy. Also the donors liver must be healthy , and have very less content of fat ( Fatty Liver) to enable him/her to donate as well as to ensure that the portion left is sufficient until the liver regenerates. As far as the recipient goes , ensure that he eats right , salt and spice restricted , high protein diet. Of course you must take the doctors advice for specific problems. Hope this helps
Liver Donor to Father in law
John
Member
Username: John_a

Post Number: 5
Registered: 03-2011
Posted on Friday, April 29, 2011 - 10:23 am:   Edit Post Delete Post Print Post

Hi, Stephanie,

My wife is also in need of a liver transplant. I started the process to be a live donor, but I was rejected due to a genetic blood clotting issue. In the process, though, the Mayo AZ Clinic gave me a web site to check out. It is http://www.emedtv.com/. Search for liver transplant. They have a set of short videos that have lots of good information.

I hope this helps and that all goes well for you and your husband.
Liver Giver
Forum Leader
Username: Beteboop

Post Number: 833
Registered: 10-2007
Posted on Thursday, May 05, 2011 - 07:55 pm:   Edit Post Delete Post Print Post

Hi Stephanie,
Just checking in with you. How are you and your husband doing? Have you gotten any information from the hospital? May I ask what state you reside?
As you can see, there have been many before you in those shoes. Although everyone's walk is different please remember to take good care of YOU in order to take the best care of him!
Dawn
Forum Leader Living Organ Donation
Liver Donor 11/19/07 to brother Anthony

Good and bad things happen in life, but what matters, what defines us, is how we handle them
AC
Member
Username: Asunlesssea

Post Number: 8
Registered: 02-2012
Posted on Monday, February 27, 2012 - 10:42 am:   Edit Post Delete Post Print Post

Stephanie!!! That was my situation COMPLETELY. The only thing I can tell u is that my personal transplant team told me that a living donor wouldnt be enough and that I had to in fact, get a whole new liver from an organ donor because my liver was so badly damaged that a lil piece would just also soon get destroyed by my idiot immune system. So basically I had to start fresh with a whole new liver, along with all the drugs to go with it to take care of it. I'm SO sorry for u and ur husband. I know EXACTLY what he is going through. Please give him my sympathy and assure him that he is not alone in this for me...ok?

Add Your Message Here
Post:
Bold text Italics Underline Create a hyperlink Insert a clipart image

Username: Posting Information:
This is a private posting area. Only registered users and moderators may post messages here.
Password:
Options: Automatically activate URLs in message
Action:
Topics | Last Day | Last Week | Tree View | User List | Help/Instructions | Program Credits Administration
 
Contact Us
Established 2000 © TransplantBuddies.org