Replies to This Discussion

Permalink Reply by Laurel on August 26, 2012 at 1:40pm

Hi. I am sorry you are going through this stressful time specially since you have made it a year with your new gift of life. I am not sure what is going on with your better half but he is not really being very supportive. Maybe you both can go in to counciling. It is his fault now for dragging you down. Sounds like there are deeper issues. You have to be happy and healthy for your kids and you may have to just focus on you. Sort of like an al-anon approach. He needs to snap out of it and focus on what he does have, a family.

Permalink Reply by Joseph Cergolj on August 26, 2012 at 2:05pm

I think that was my hardest time. I now feel I had to learn how to live not only with a new liver but the meds also

Permalink Reply by Mark on August 26, 2012 at 4:30pm

Carly, it is obvious that you are under great stress right now. From your description it sounds like the people close to you, your mom and your boyfriend, are still not done with grieving the loss they almost experienced 8 months ago. Most people who undergo liver transplant surgery (and their caregivers) are carefully evaluated and prepared for periods of months if not years. Their families are educated about the process and understand the risks early on. In your case, there was not enough time to prepare due the dire emergency that existed back then. I would highly recommend that you contact your transplant center and ask about the education programs that are usually made available to pre transplant patients and families. These are free to patients and their caregivers. They cover nutrition/exercise, infection/rejection, medications, psychosocial/financial issues, life/death and other subjects. Mine was comprised of six 1 hour group sessions with Q&A at the end of each, and caregivers were *required* to attend. If you are interested in something like this, tell your transplant coordinator or social worker. They should be happy to set you up even though it is after the fact.

In the meantime, please try to relax and focus on your needs. With liver transplants, your health is very fragile for a while -- your meds, nutrition, exercise and stress management are vital. Don't be shy about stating what your needs are to your family. They won't understand unless you tell them. Good luck Carly ... folks here are rooting for you!

Permalink Reply by Carly on August 26, 2012 at 5:46pm

This has been one heck of a ride in life. He has been amazing through all this. He focuses too much on me and forgets he needs to take care of himself. I will definitely look onto that Mark, forgot about the classes they told us (short term memory). That sounds like something he and i both need. Joseph, i know exactly what you mean. Every thing that someone makes, i have to ask what's in it. Might be something i can't have. Medication is another thing, trying to remember to keep them separated. Thankfully, they are taking me off the cellcept on the birthday and i am so nervous lol. Thank you guys. This has really helped! I felt so alone until i found this :-)

Permalink Reply by livecam on August 26, 2012 at 5:41pm

I guess I don't understand what "not doing more" means.  Does he think he should have gotten you medical help earlier or that he didn't do enough to support you when you were sick?  I think explaining to him that his actions now are causing trouble for you would be helpful.  The past whatever it is, is done.  Neither of you can go back.  He does need to know that his dwelling on the past is hurtful to you now and that you would appreciate it if he would stop that stuff.

Permalink Reply by Rita on August 26, 2012 at 6:17pm

First, let me say happy birthday. anniv are emotional times. i also think there are a lot of care givers as well as transplantee, or those waiting deal with life difficult moments in different ways. some fall apart emotionally as it is happening, some before if they know it is going to happen, and some it doesnt hit them for some time even years. and some keep it all in and some let it go and share it all. there is no correct way we all morn in different ways. and it is morning for a loss, there is guilt, regret, ......you name the emotion and it is there. happy ones too. i am sure you know all this but sometimes i know i need to hear things a few times before i really understand it emotionally. you can talk with him, i know i went to see someone a few years after my transplant, i asked questions about my husband who sounds similar to your, my husband would just say we will get through it and not open to talking about feeling. so he never even thought about going with me to see someone. the therapist told me that the point i was missing was that i almost died and my husband had to deal with that.......duh that never entered my mind......i knew that but i guess i was so busy trying to be able to live it never occur to me that my husband was the rock and it took a big shot. i know all here are going to tell you and i agree to try to get your husband to talk to someone and get support. i can tell you, my husband would never go for support, just not a talker or a chatter, it is not the way he was made. i on the other hand can chat to a blade of grass lol, however i also am not one to ask for help, however it is a growing process for me. mine is one of those manly men, strong and silent type, with a big heart, and deeds that shine through, not the chit chat. my think is.......get him to go to an appt with you and ask the question of the dr or social work with him present. you may fight on the way home but it will get him to talk. just my thoughts........i am sure others will have good post. wishing you the best. keep talking and posting here or email me or others......rita

Permalink Reply by Carly on August 26, 2012 at 6:26pm

Rita, that's exactly it! You took it right out of my head! Lol I don't want anyone thinking he's being selfish because really, both sides have gone through two different things. One went through the waiting and seeing it happen to a loved one (him) and the other went through some really weird mental dreams' of fighting a rabid 6 foot scooby doo and not having a clue to what was happening (me).

Permalink Reply by Mark on August 26, 2012 at 9:04pm

A 6 foot scooby doo is pretty bad. A rabid one is absolutely terrifying :)

Permalink Reply by Mark on August 29, 2012 at 12:08pm

Carly, I forgot to mention a website that I joined years ago that is *very* informative to transplant patients and caregivers.  Registration is required, but it is a free site with no pressure to buy anything.  They sent me some really nice printed materials with a free pill organizer (which I still use).  Their extensive educational material is also online.  Top notch info source!

http://www.transplantexperience.com/

Permalink Reply by Hostess Risé on September 1, 2012 at 11:21am

Can you give us more detail into your story.

 

Sounds like he is not letting you heal.  Maybe he wants the attention that you were getting?

 

Without full detail it is difficult for us to really listen.

Permalink Reply by Carly on September 7, 2012 at 1:45pm

We had a good heart to heart last night and it really opened my eyes. He opened up and I got more than i bargained for. Its hard to understand what happened and how serious it was, when i was in an induced coma (i fought hard with the nurses and kept pulling tubes out, which i don't remember. And they ended up doing that, restraining me among placing a breathing tube on). I was there when they told him they didnt know if i would make it. I wasnt there when they told them they had no answers as to why, how, what. The first couple days were hard. Would he have to plan a funeral? Would my kids remember me? Would they know my love for them? And it goes on and on. He felt so helpless and lost. I was always his rock and made the tough decisions. I calmed him down when things were out of control and he thought he lost all that. This wasnt something we knew was going to happen. On a Saturday, i didn't feel right, by Tuesday, they thought i was going to die.

Permalink Reply by Carly on September 7, 2012 at 1:30pm

Oh thank you! This will be a major help! Mark, you and everyone here amaze me. Seeing the downfalls some had but still so positive is incredible. I know people that have been through less, and they just make me want to smack them *laughs*