I miss my old life

[Susanlim]

I know I should be grateful that I got a liver transplant. Was born with a liver disease so it was a definite that I had to have a transplant someday. I had it 3 years ago, before I turned 18. My mom donated her liver.

However I always had a complication with my bile duct. It doesn’t work properly and keeps giving me an infection. I am constantly in and out of the hospital because of sepsis shock (the bacteria got to my blood). I always have a PICC line because everyone I get the infection, I’d need 4-6 weeks of antibiotics.

The first time I had the infection, they put a drain in me to drain out the abscess. And the tube just kept getting bigger and bigger. It was a hell lot of pain. I really miss my old life. I was supposed to travel with my Friend but every time I plan something, the infection comes. And I can’t say anything because I don’t want my mom to feel bad cause it’s her liver. Because it’s not her fault. I just think my life really sucks sometimes.

Had the same infection again recently. I had antibiotics for 4 weeks and the recent scan showed that the abscess didn’t change. It’s still the same size which means more antibiotics but what’s the point? It doesn’t seem like it’s working.

The only other 2 Long term solutions, the doctor said, was a re-transplant or taking out the portion of the liver that keeps getting infected. Both of which very risky. I don’t wanna die, I’m only 20! But I don’t wanna love like this. It’s not right. Because of the Long stays in the hospital, I had to withdraw from school. I’m just feeling so lousy and so depressed but I can’t even make myself cry.

I’m just here for support and to see if anyone is experiencing or has experienced this before.

[Kimlescam]

Hi Susanlim

I'm so sorry - I have no idea how you must be feeling. My husband has a transplant last year and has infection after infection which really gets him down.

I hope things get better for you and you get the advice and help you need.

Sending positive thoughts and a big hug.

Good luck

Kim

[Hidden]

Hello,

This is such a difficult situation for you to be in.It does happen sometimes that there are lots of complications after transplant and it must feel like they will never end. The conflict between feeling grateful for the liver and feeling upset about the complications is extremely difficult to handle.You may find that your Mum already realises how you are feeling. I wonder whether there is a transplant support group at the hospital where you had the transplant, counselling service,do your medical team know how depressed you are feeling about the repeated admissions and the impact on your quality of life ? I am sure you will get support from this online community but do speak to your medical team as well.

regards

[Hidden in reply to Hidden]

Hi

I really feel for you, I can only imagine and empathize how rotten you must be feeling. I know I will need a transplant at some stage but not yet. Thinking of you. Love and hugs Lynne xxxx

[Isabelle2]

Susan, my love

I feel so sorry for you. I’m 53 and also am a transplantee. I only had mine 14 months ago. It has been tough sometimes as I get repetitive urinary infections and have very painful hands due to my immunosuppresseurs. Also I suffered slight brain damage due to HE as I was in a coma pre op. However the big difference is that I have my husband and kids. You have yet to make your life, mine although not over (far from it) is well and truely mapped out.

I understand how terrible it must be for you continually returning to hospital. You must feel like life is passing you by at a time when most are living it to the full. However, please try not to be too down. I think it would be a good idea if you could speak to someone at the transplant Centre or local hospital about it. I know you don’t want your Mum to know as you love her and don’t want her to think she’s let you down. However, as a Mum with daughters 21 and 18 I can promise you that she’ll just want the best for you and will want you in better spirits. Perhaps if you spoke to her she’d be able to help, or at least understand you are down and need a lot of TLC. Even at your age my girls still think Mum hugs are magic! Why not talk to her and ask for a Mum hug! You never know it might work 🤗

Thinking of you

Isabelle xx

[mrsmerlin]

Hi Susan

As the others have said I feel awful tgat you have become so down. It is hard being that age and feeling as though you are watching your friends live from behind a window. Been there, done that. I was in an isolation ward for 6 months at 18. But it does pass and the bonus is that when you feel better your friends will have slowed slightly so you'll be on a level field..

You do need to speak to someone about your depression. A specialust in transolant related problems will be ideal. I don't know if anyone has mentioned it to you but they are trialling an online counselling service for children through to young adults. My son uses them as he finds it easier not to be face to face. It's called Kooth.com i have just checked and they are offline at the moment but will be back up soon. It's a free service that you can refer yourself to. Our GP told us about it.

If you can find a way, whether talking or through a letter, please tell your mom

She's not going to feel that you are somehow letting her down and she knows how grateful you are. She is probably worried because she sees you depressed but doesn't know why. I know I would want to know if you were my daughter.

As for the infections stopping you from travelling, once your depression is improved - and only after that - see if your doctors are prepared to give you antibiotics prophtlactslly. That means a constant, usually lower, dose tgat you take whether or not you have an infection. Sometimes thus can keep infection at baying enough to travel

If you do be sure to get repatriation insurance so if anything happens you can be flown back home immediately.

I'm sorry for the long waffle but i hope you see that there are ways round most problems once you ask for help.

Take care of you

Rita xx

[Welch06]

Hi Susan,

I can't offer any more advice or guidance to what has already been said but just wanted to send you a big hug & remind you that although it's crappy it won't be like this forever. Please please talk to your mum & together get support, she may be feeling rotten too knowing that she went through the op & you're somehow worse.

Humongous hugs xxxxx