Transplanted and mother of two

[Jahida]

Hello all, as some of you have read regarding my acute liver transplant, I'm still recovering.

I have a daughter who is 7 but she is disabled and a newly turned two year old. Before the transplant I was very stressed out with my daughter's needs as I had another little one to look after. Physically it was challenging and now after the transplant, I do not think I'm in a physical state to go back to that.

Another thing is lack of support. Where we live, we have a small Set of family and they gave up working to look after my children whilst I was in and out of hospital. I was hospitalised thrice and the longest stay was in QE.

If I had to be hospitalised again, I'd have no support for the children. So my family have told me to move near them and rent until we can buy a place as we own a house where we live. However my partner is not willing to do this and he thinks I'll be physically fit and well and if I was to be hospitalised due to infection or rejection, he'd take the kids to my family who live 200 miles away. But that would mean my daughter's school would be affected a lot. It isn't fair that my partner is actually being quite selfish about it. Everyone around us is saying the same thing.

Currently I have moved in with my parents temporarily as I need help with the children but it is hard work. It's not nice not having any space and burdening my family. However, if I had a small place of my own I'd at least give them breathing space.

So how do mothers cope with lack of support around them after a transplant?

Thanks

[susieanna]

Firstly, you are very brave; it must be incredibly difficult for you. Umm, have you looked into a new school for your 7 yr old in your families location? Also, is the reason your partner doesn't want to move due to work? Have you discussed your recovery with your specialist? Your thoughts about help/not coping/moving? Would you not be considered to be, in a way, disabled at the moment? I was thinking about DLA/PIP to get extra money so you could get help at home/ plus with your children?

It sounds like your husband is being selfish; but that's why i'm asking these questions.

I don't think you should worry about burdening your family; they obviously love you and families are there to support and help other family members which is what you need at this time.

I don't know how mothers cope after a transplant with lack of support; but there may be ways to get more support ; is there no one at the Hospital who can advise you of how you might get extra support?

You need to look into all of these things; also if you did relocate; what is the Hospital like where you would move to? Or would you be travelling back down to London?

There is a lot to consider and look into; but the most important thing at the moment is your health; you will have to think about all of the above and try and get some answers.

At least you have a family who are supporting you, and your partner needs to support you to. Discuss things more and with your specialist too, about your recovery; you may then get an idea of time limits etc re recovery, fitness, what to expect etc.

For the time being, it sounds like its best you stay with your family, despite the lack of space, then hopefully, as you start to feel better (which I am sure you should), you can make more informed decisions.

Good luck! and best wishes.

[Raksha1964]

Hi

Speak to the co ordinators at QE, they are a mine of info & support & can point you in the right direction, also the Drs, you may get slightly different answers from different Drs, but they are excellent.

We had all these problems post transplant, although my children are older, my only support is my partner & 2 girls. Have you considered asking about councilling? Drs at QE suggested for me as post op suffering with depression, PTSD & anxiety, I eventually agreed & it has helped just being able to talk to someone out of the situation, for the first time since op I nearly felt normal.

Like you am not having the road to recovery as they hoped, lots of bumps in the road & am now disabled. I always worked full time so not being able to is hard & depending on others to do things for you is embarresing at times, but as I was told, they love you & want support you, but they need to come to terms with the changes in you as well, it takes time, you need to talk to your husband & family, understanding how they feel & them understanding how you feel can help the road to recovery. Between you can come up with the best way forward for you all as a family & what changes need to be made, short or long term.

If you do decided moving is best remember check out local gps & hospital services for your support, but you will always have to travel to QE for your check ups, as well as schools for your children. Children are stronger than we think & will adapt.

I try to wake up every morning smile & say to myself I am alive because of the wonderful gift someone gave me I have the chance to see huge mile stones in my children's live, how ever much discomfort or pain am in.

Good luck & stay strong there are better days to come