Advice needed

Hi everybody need some advice ! Hubby had transplant about 15 weeks ago . He was in a coma for 2 weeks afterwards as couldn’t wake up . So weeks later he seemed to be doing great. now the last three weeks he’s not going out , not getting any form of excercise , sleeps a lot and said his scar hurts really bad ,hence why he’s not doing anything ????. He’s been to doctors and they have Gave him co codamol for pain . I personally think he’s in a rut but he’s saying it the pain . Any advice would be good x

[h0b0]

How often does he go back to the hospital to see the consultant ? He needs to speak with them rather than his GP.xx

[Hidden in reply to h0b0]

He’s not there for a few weeks . He did ring them and they said go and see your doctor . X

[h0b0 in reply to Hidden]

That maybe but if you're overly concerned then you should contact the transplant nurses again . They are usually very understanding. xx

[Hidden in reply to h0b0]

Thank you. think I will try calling them without him knowing as it’s very worrying him not wanting to do anything except sit on sofa with jim jams on watching tv . X

[Kristian]

Is there any signs of infection? Its important to get up and about even if its only in short bursts. Things hurt for months, but if its not getting better then it does need looking into. There may also be more to it than just pain. I'm no expert, but the psychological affects of what he's gone through may be hitting home. That doesn't happen to everyone but its not unheard of, particularly if its not been such an easy ride post transplant. He probably wont like it raised but it is worth discussing if nothing more obvious raises its head.

[Hidden in reply to Kristian]

Gonna try and get appointment with transplant team . Thank you x

[Porphyriamaniac]

Maybe he's just a little bit down debski? I can only imagine a transplant and all it entails, it's a major trauma not even taking into account all the illness/weakness beforehand, will really take it out of you physically, emotionally and psychologically. It may all have come to a head for him in some way? These are of course just my thoughts from what you describe. I do hope you get to the bottom of it and wish you the best. xxx

[Hidden in reply to Porphyriamaniac]

Thanks Stacie hope to get appointment with him this week xxx

[OrchidNinja]

Hi Debski.

I’ve had a couple of transplants and know how much they hurt. I was in a coma for the first one as well and remember the fog of it all afterwards. But, the most important thing right now is to get up and get moving even though it hurts.

It will makes things much much easier in the long run, just go slow and steady, little bits at a time.

Even just standing up straight and walking around the house is a win.

As long as there’s no sign of infection or rejection, just keep moving and drinking lots of fluids.

Once he gets some momentum, keep it going. It really is just coming to terms in some ways with what really just happened to your body, it is traumatic. Especially when you’ve been asleep and so much happened while you weren’t aware, and it was completely out of your control. It’s overwhelming, all of it.

Little goals. I wish you both all the best.

Shelby

[Hidden in reply to OrchidNinja]

Thank you 🙏🏾. Hope to get appointment this week as he just shouts if i day anything about excercise xxx

[Hidden in reply to Hidden]

Say not day ??

[Hidden]

I had a transplant on the 18th of March all went really well, but I have recently lost quite a bit of my get up and go and sleep quite a lot if I sit down, I think I have got out of the habit of doing things after 7 years of feeling tired. I cannot really explain but understand how he may feel, I am still not used to being more active, encouragement to start getting dressed and walking around getting a cup of tea started me back to normal.

A lot of the advice you have had has been good

David

[Hidden in reply to Hidden]

Thank you dave x

[GrannyDoll61]

Everyone is different. My hubby tried to do to much to soon and fell and broke a rib! He found colouring in books very therapeutic and visits from friends and family really helped. He is now well enough to go to physio twice a week which is really helping his back pain(5 months post-transplant).

[Hidden in reply to GrannyDoll61]

Thanks for advice x

[Phoenixv]

hi everyone's different on pain killers but my husband did not suit co- codomal in fact I put him down as allergic to this pill and he has paracetamol for pain it made him sleep and not himself he was not good on it - although my husband was not lucky enough to have the op because of age he has had skin cancer he nearly bleed to death a year ago because of varies and he was drained every two weeks for a year because he had ascites he has had two eye ops and was given a year to live 3 years ago - what I am trying to say you will get through this if you can sought pain out first it will help him feel better in his self - anyway best wishes from us thinking of you both

[Hidden in reply to Phoenixv]

Thank you x

[X19Dave]

Hi my wifes scar still hurts her and that is post 2 years but it is not as painfull as your husbands sounds go to the transplant hospital sit in a chair tell them you NEED to see someone and you are not leaving until yo do my wife was lucky hers was done at Addenbrooks any problems and they will see you same as Phoenixv above my wife did not have good results with co- codomal made her feel unwell and knocked her sideways tell them he needs tramadol very high strength and very good

Hope he feels better soon but he does need to fight the pain and keep moving

Dave

[Hidden in reply to X19Dave]

Thanks dave yer Karl got his done at addenbrooks. Gonna ring them tomorrow xx

[PCBnPBC]

lots of great advice here, good luck to you both, I think some Doctors are very inexperienced with transplants, I just add the experts are the transplant team, and they have a vested interest in making sure your husband does well!! they (in my experience) welcome your concern, do not (do never) hesitate to talk to them or make appointment to be seen, as for hubby, just take him!! do not ask him!! he sounds like he has no energy to disagree (my wife took control of me when I had no get up and go which had got up and gone! ) good luck, I trust all will work through.

[Hidden in reply to PCBnPBC]

Thank you 🙏🏾 x

[Denise15]

Hi I was in a coma from June to September I had complications and two transplants. I can only say it takes time I did not leave hospital until 6 months on and had physio which helped immensely. I did not experience pain per se but it has taken me lots of time to feel ok enough to even do anything myself. I am now three years on and did start an exercise group but was admitted to hospital after just two weeks with acute pain. I thought my liver was problematic but it turned out I had just pulled muscles after very gentle exercise! My husband has banned me from going back to the exercise class. I guess what I’m saying is it’s early days. Some people recover and are motivated to get back to normal quicker than others. The pain will subside and he will gradually start to do more but it could be a while. I found my transplant team and nurse coordinator s were exceptionally helpful so try them and consultant for advise. I’m afraid my Gp doesn’t have the specialist knowledge. Good luck xx

[Hidden in reply to Denise15]

Thank you 🙏🏾 xxx

[Kimlescam]

Hi Debski

My husband had his transplant in November 2017. He had no issue or problems afterwards unlike your husband and actually returned to work within 3 months. Looking back I think he would agree that it was just too soon.

For the last 2 months he says his scar is hurting and he feels tired and ill constantly. Our consultant and the transplant co-ordinators have been brilliant and he was readmitted for tests last week so we are waiting for results.

He is still in pain with the scar and grumpy most of the time which is unlike him. It's like he has had a complete a complete personality change.

I hope you get some help as I am not sure painkillers is the way to go - my husband is relying on them too much.

Good luck and hope you get some answers soon.

Kimlescam

xx

[Hidden in reply to Kimlescam]

Thank you 🙏🏾 it’s hard just watching them doing nothing errrgh xx

[dougalgromit]

Hi debski

Can you not get in touch with your transplant nurse and get some advice as what to do as it sounds like he is a bit depressed hope all goes well for you x

[Hidden in reply to dougalgromit]

Yer there gonna bring his appointment forward he’s not gonna be happy though as gonna tell them everything x

[dougalgromit in reply to Hidden]

My husband was the very same he got angry because he thought that by telling the doctor that he was struggling that would make him feel useless and honestly when we got home he said it was the right thing to do as he felt a lot better after we had spoken to the doc your hubby can’t just keep his head in the sand as it’s not just him going through this you are to

Good luck and I hope everything goes well for you both if you ever want to chat just message me sometimes it’s easier to talk to someone outside of the family Donna xxx

[Hidden in reply to dougalgromit]

Cheers dear today he finally got off the sofa and walked round garden for about half hour so maybe my nagging has got to him x

[Kimlescam]

Hi Debski

I always tell them everything (after advice from this forum). He always tells them everything is fine and he feels fine then they look at me and I tell it how it is. Yes he gets annoyed at first but if they don't know what is going on how can they help??

Good luck with the appointment xx

[Hidden in reply to Kimlescam]

Thanks love I am this time x