Replies to This Discussion

Permalink Reply by Ramona on January 11, 2010 at 7:00pm

Hi & Welcome!!! This is a wonderful place to come for support and information. My husband, Dean, had his first transplant 21 years ago & is currently listed for another one. I also have days on the emotional rollercoaster - and Dean sometimes want's to ignore his situation and pretend to be "normal". Live donor is not an option for him at this time, though I'm not sure we've ever gotten a clear explanation as to why. I think things will go very well, very smoothly for you and Steve - feel free to vent any time you need to!!! If he won't talk about it with you - we will! :0)

Hang in there....

Permalink Reply by Megan Ellerd on January 14, 2010 at 7:50am

Ramona! Thank you so much for extending your support. This website will definitely make it a little bit easier to get through this crazy time. I cant blame them for pretending to be normal. I would probably do the same, that's probably something that helps them get through it. If they were dwelling on the sickness all the time, it would be harder to overcome i guess. I wish you and your husband Dean luck with transplant #2. I'm glad there's a place for us, caregivers to come together and support each other. Thanks again! You and Dean will be in my thoughts and prayers!

Permalink Reply by Sara on February 4, 2010 at 8:50pm

Hi megan,


Just want to let you know that I have been there and done that and oh my god I am so glad that the worst part is over now.
My name is Sara and my Husband John received a new liver February 26, 09 and his 1 year liverasery is coming up !!

Rollercoaster ride is exactly what you go through.. Omg I remember when I first found out he needed a liver that was the first big blow.. Then tests after tests and hope that he will finally make the list.. And when that day came it was wonderful And then more problems of course , getting sicker and having to go on lactalose so he doesnt forget where he is.. The whole thing was so mind boggiling I can't believe we made it.. You will get days that it seems that he doesnt get it , They do get it , I don't know if it denial or they don't want us to worry could be a combo of things. Just be strong if you can , it is so hard and you are so young to be going through all this. Do you have any support from anyone in your family ?? I know his mom is doing a great part but you need someone to talk to also..

The big day will happen for you it seems like forever but it will. If you need to talk more you can email me my address is sonicsara12@aol.com .. I was my husbands caregiver and always will be , he won't have it any other way. And you know what he is so well now that I am going to have some minor surgery soon and he will be my caregiver - who would think!!

Anytime you want to talk just write. p.s. just looked up your profile -my husband had his transplant at NY Presbytarian .. Great hospital !!

Sara Wells

Permalink Reply by Flo Berry on March 10, 2010 at 9:16pm

Welcome, Megan! My husband had his transplant on 10/17/07 (liver) and is in better health today than he has been in his life. It was a fast trip for us - such a whirlwind - and frightening at the same time. We did not expect it and getting the news that he needed a transplant was certainly a blow. It was a roller coaster ride with the ups and downs with his health and the hospitalizations. We made many trips to Northwestern in Chicago but they were awesome. We couldn't have asked for better care. The only thing I found lacking was caregiver support. So when I found this website, I decided to start this group so others would feel they had a place to go for information and support.

Don't ever feel you've rambled, written too much or gotten on your soapbox too long - it can never happen here. Hopefully someone here can answer some of your questions and/or provide you with some sort of comfort as you go through this whole experience. It's difficult at times to find the patience we need as caregivers and yet there is no one else around you close to talk to. Well, we're here - just a click away.
Share your good news and bad news. We'd love to hear from you. Keep us posted on how Steve is doing and how you're dealing with it all.

Again, Welcome!

Permalink Reply by Kathleen on March 22, 2010 at 5:55am

Megan....while I was reading your post I couldn't help but think of my own situation. My husband & I have been going through health issues for the last nine years (since I was 24 and he was 26). I completely understand everything you said. My husband has been listed for a new liver for 3 years ago (at NY Presbyterian...I see your fiance is going here too) and his health has been maintained but we have definitely had difficulties along the way. He has ascites and varices as well as ulcerative colitis. His MELD score is only a 12 so he has only gotten a few calls for a new liver, none of which have worked out. We are looking into living donor options but my husband is apprehensive about this b/c he doesn't want anything bad happening to anyone who is trying to save his life.

It is a very complicated and cumbersome experience. What I have learned over the years is that you just have to take one day at a time. I completely understand your frustrations and fears. Your fiance has alot of adjusting to go through....being young and sick is just not something we are used to dealing with as a society. It sounds like you are really smart and strong and that is exactly what your fiance needs right now. My husband is also an "avoider" when it comes to his health but he is so much better now b/c he knows he has alot to live for. We have been together for 17 years and have a 3 y/o son.

Just hang in there and if you ever need to talk, feel free to message me. I hate seeing someone here so young but I know exactly the place you are in and how lonely that can be somedays. You have definitely made a good start by being here.

Good luck with things.

Kathleen

Permalink Reply by Jan S on July 20, 2010 at 6:32pm

Hi Megan,
I wish you and your fiance the best. I recently lost my wife to liver disease - she was waiting for her 2nd transplant. I was with her the entire time though - from getting the diagnosis to the end about a month ago.
First of all - I think you need to give him time to adjust to the diagnosis. It is a life changing event - for both of you. And while he adjust - the best you can do is to learn as much as you can about autoimmune hepatitis (let me know if you need any information), and find the best possible hospital. If you want - I can let you know what hospital I would go to if I could go 10 years back in time.