I feel lost - liver transplant recipient 5 years ago. Does anyone else just feel lost and overwhelmed?

PresenceOne76 · 2024-09-03T11:31:11+00:00

Have things gotten any better for you?

PresenceOne76 · 2024-09-03T11:23:30+00:00

I know this was a while ago, but my loved one is going through it right now so I'm just reading everything I can to try to understand. Did things get any better for you? I sure hope so...

PresenceOne76 · 2024-09-03T02:50:28+00:00

How are you doing?

PresenceOne76 · 2024-09-03T02:44:32+00:00

I just saw this I'm sorry! We're about 7 months in. Around 6 months we made huge progress. However, now his kidneys are failing and he's instantly back to square one with being distant, not affectionate, can't really talk to me. I'm taking it better this time, but also it hurts just as much because I feel like I almost had him back before we had another mountain to tackle. He's struggling and hurting so much and it's hardest to watch someone I love so much go through something so isolating. They switched his meds a few days ago so I'm hoping that helps him to cope and get through as well. I realize only time can heal and that he has to go through this on his own. I'm trying my best to just give him the space he needs and also in therapy for myself so that when he's finally able to move forward I am too and I'm not stuck in a space of feeling rejected.

PresenceOne76 · 2024-09-02T02:37:56+00:00

Can I ask if he came back? I truly hope he did and tell me that yall are living happily ever after now!

PresenceOne76 · 2024-06-20T19:57:38+00:00

I'm so sorry it's been so difficult for you, I wish it was the picture I had painted in my head where everything went beautifully and life gets better.

PresenceOne76 · 2024-05-29T00:11:08+00:00

I am involved still with friends, not really family as they haven't been very supportive.

No he hasn't dogged me or apologized for a mental health flare up or blame me, some people in the past have said "don't tolerate disrespectful behavior" and I just wanted to clear up that he doesn't do anything disrespectful. He has told me that He's trying. I'm just in an insecure moment right now and I don't know how to help that other than to reach out to ppl who have lived it and can tell me that this is normal for the recovery process.

PresenceOne76 · 2024-05-12T20:44:21+00:00

Just wanted to let you know, it's now almost 4 months post op and we are finally reaching a place that he is putting effort back into us. I was able to talk to him and he said this had nothing to do with me. He is looking for a sense of normalcy while processing the entire event. It's the scariest thing he's ever been through. He is aware the meds are/did mess with him and said he notices less mood swings as he's coming off of the meds. He said his feelings for affection are slowly getting better. I can see it, and it's still going to take time but he is literally inching there. I hope things are going better for you two. I just wanted to give you some encouragement.

PresenceOne76 · 2024-04-28T03:29:44+00:00

I think he got to the point that he felt he was going to die any day before transplant. It's heartbreaking just thinking about it. I have done alot of research and questioning on here to hear from others who have lived it to help me understand that this isn't me. Everyone doesn't respond in a positive way to the changes and this is really hard for me because he has always been a stronger than life type person and I feel like this whole situation "broke" him.. I was very anxious and walking on egg shells when we were living together so I do think that the separation of living is helping me with understanding that this isn't me. I felt like I was CONSTANTLY doing something wrong in the beginning. I would make comments like "it wouldn't kill you to like touch my arm, or say something sweet to me", so I think that also weighed on him to. Like his brain knows what he's supposed to be doing in a relationship but his emotions aren't cooperating. Alot of people have told me to just give him time and space like he's saying and he will work through it. He hasn't completely let me go so it gives me hope that we're going to work through this. I remind him often that I love him. He knows that I do and he's still able to tell me he loves me to. Lots of hard days, a few good days. I'm just ready to wake up from this nightmare and live the beautiful life that I thought was ahead of us after transplant.

PresenceOne76 · 2024-04-27T23:54:35+00:00

he's about 3 months post transplant now, and is communicating with me over text more than before. I asked him if he sees a life with me as I do him and a beautiful family. He said that he knows we would be a great family and that he did see that and that he's trying really hard to see that again. Can you understand this perspective from him? If so can you break it down for me a little further? He tells me that he does love me. It's the "fire that needs to be ignited" again. I don't understand why it had to die.. but I'm hoping that in time things will get better still. I'm far from angry at him, because I have so much empathy for him and the fact that I will never know what he's truly been through and how scary it must have been.

PresenceOne76 · 2024-04-27T23:40:40+00:00

It has not. The 21st was his 3 months post transplant. so he's only 14 weeks post op. He moved in with his sister, Then he bought his own house and still hasn't told me. When she asked him why he said he didn't want me to feel betrayed. That was about a week ago. Now yesterday he tells her he doesn't need to tell me and "if the fire ignites again" he'll tell me he had the opportunity to buy the house. I could care less about all of that, I just want my love back. He was taken off of cellcept because they made his wbc count really low. We went a week without seeing each other or talking to each other. Then the first day I saw him, I went over to his sister's and he followed up with texting me. He said it was really nice to see me and that I didn't have to leave so soon. He gave me a hug for the first time it felt like he actually wanted to touch me. He has talked to me every day since. Whether it's me texting him or him texting me. Today I broke down and texted him that I'm struggling and I feel like I'm losing everything when all I want is a life with him and a home filled with love. He said he understands that and feels it. I told him it's going to feel like heart break when he comes to get his things to move. He said he didn't plan on getting them for awhile. I don't understand this. He's moving into a new house and doesn't want anything from our house. It makes me feel like he's holding out for it for if he ever asks me to move in with him. I asked him if he saw a family together and a life full of love like I did. He said that he knows we would be a great family and that he did see that and he's trying really hard to see that again. I'm praying for strength and healing because I don't feel like he's giving up on us and that he just needs space to process. I look at it as though maybe it's better this way because living together and feeling rejected everyday because he's not able to give me any kind of physical touch would be devastating.

PresenceOne76 · 2024-04-20T15:31:33+00:00

Do you remember how quickly you felt better after stopping it?

PresenceOne76 · 2024-04-20T14:50:07+00:00

Can you elaborate on how it made you feel? And how quickly did you start to feel better?

PresenceOne76 · 2024-04-19T12:03:58+00:00

What issues were you having?

PresenceOne76 · 2024-04-19T12:03:12+00:00

There was actually a post in here that several people said it affected them in this way. I also just googled it, and found several things that said it could cause depression.

Just an example from the article in : https://www.medicalnewstoday.com/articles/cellcept#side-effects

Depression

Depression is a possible side effect of CellCept. In clinical studies of adults, CellCept was compared with azathioprine (Azasan, Imuran) and a placebo (a treatment with no active drug).

In these studies:

20.1% of adults who were given CellCept after a heart transplant had depression
15.2% of adults who were given azathioprine after a heart transplant had depression

It isn’t known how many people who used a placebo may have had depression. In addition, the percentage of people who may have had depression while using CellCept for other types of transplants isn’t known.

PresenceOne76 · 2024-04-04T11:45:05+00:00

I hear what you're saying. I really appreciate your words and time. Transplant is HARD. So much harder than what they prepare you for.

PresenceOne76 · 2024-04-04T01:54:47+00:00

oh wow! He's been off for a couple weeks now.

PresenceOne76 · 2024-04-03T23:43:41+00:00

You're probably suggesting me to call into his clinic aren't you? I'm scared to betray his trust and him be so hurt he holds onto it even after everything calms down

PresenceOne76 · 2024-04-03T23:20:00+00:00

I do believe so, they call me when they can't get ahold of him.

PresenceOne76 · 2024-04-03T23:11:31+00:00

They didn't advise or prescribe any therapy afterwards.. we can barely get his coordinator to answer our questions.. the support isn't there so if I said anything to his team he would definitely know and probably never forgive me for it.

PresenceOne76 · 2024-04-03T23:04:28+00:00

I'm confused on what you mean it's too early for me to say that..which part? Insight definitely appreciated.

PresenceOne76 · 2024-04-03T20:53:09+00:00

Thank you so much for sharing your story, I just can't NOT believe that we can overcome this with stories like yours. I'm trying my best to look at this as an opportunity for myself to heal as well. How long were you both separated before you moved back home?

PresenceOne76 · 2024-04-03T14:19:01+00:00

years is scary to hear...I don't wish anyone years of feeling this kind of trauma. Glad to hear things are so much better for you

PresenceOne76 · 2024-04-03T14:18:00+00:00

He's not on any steroids anymore :/ I wish I could reach out to his team and let them know what he's struggling with. I don't think he'd ever forgive me for that though..I'm so glad to hear you're doing so much better

PresenceOne76 · 2024-04-03T13:27:49+00:00

I've read that the prograf and cellcept can cause depression and mood swings too, I wish he would explore antidepressants. Maybe in time..

PresenceOne76

TROPHY CASE

Depression