Still having pain.

[raqs67]

I'm almost 10 months post transplant for pbc and still getting quite a lot of pain on right side of my scar and in my back especially if there's any pressure against it(sitting in chair). Am I just looking for problems or is this normal.

Thanks in advance 😊

[jojokarak]

It's normal mine has only settled last month or two and I 18 months... I still get in bed if I lie in an awkward position .... Hope your doing ok apart from aching x

[cazer]

hi raqs... i had mine in may last year... ive struggled with quite a lot of side pain...

also now have episodes of pain at front and have to have a stent fitted in bile duct....

i hope your pain eases... how are you doing otherwise?

i must admit its not been at all what I expected... pretty good the first few then gradual deterioration.... very frustrating....

hoping proceedure will help...!!!

best wishes cazer. xxx

[raqs67 in reply to cazer]

Hi Cazer, I'm so sorry to hear you've got to have a stent fitted. Yes I agree feel as if I've taken steps back. I've gone back to work on phased return but I am struggling. I feel guilty for moaning cos I'm truly grateful to my donor just wasn't expecting all these other problems, but at least we're still here to moan lol. Hope your surgery goes well 😊

[Lucdizz]

Hello raqs67

I am also 10 months post and have the same problems, if I sit in a wood chair it absolutely kills me with pain on my back!, so I avoid them, heating pad helps me a great deal! I do have pain on legs most of the time, I am not sure if it will ever go away, other than this I’m doing greattt! my transplant clinic is to far away so I am not being fallow like I should be, I do go for blood work once or every other week and they tell me I am fine. Just hang in there, we will get trough these ackes and pains

I hope this helps a little 🙂

Dizz

[raqs67 in reply to Lucdizz]

Hi Lucdizz I too use a hot water bottle which does ease it a bit but just can't get comfortable for very long. My joints too ache terribly, some days find it hard to walk any distance. It's comforting knowing I'm not alone and others are experiencing these problems. I'm not going mad after all 😂😂

[Lucdizz in reply to raqs67]

Hi Raqs67, You are not alone for sure! Another thing that helps too, massages, maybe your hubby can give massages 2-3 times a week! My husband gives them to me and no body ackes for a couple days, we have to do whatever works since we can’t take pain killers! I hope you start feeling better soon! May 2end I go for my one year fallowup, my transplant was May15- 17 I live in the USA, My clinic is in Jacksonville, Florida. Take care girl!

Lucdizz

[cazer]

yes.. i feel exactly the same...i am very thankful to be alive.. but since the autumn its been a struggle... i have been unwell and unable to work since 1999...i had high hopes for after the transplant.. but struggle with even the basics... like getting myself ready for the day... xxcazer

[raqs67 in reply to cazer]

Seen my specialist yesterday and he said it's not a miracle cure but I think we live in hope that we will feel so much better. The side effects from meds don't help. My liver is working fabulously though just everything else falling apart 😂😂😂

[debi_p]

this conversation seems familiar could be me. i'm 14 mths post and aches pains specially right side and all been cleared as ok, so I smile and carry on x

[raqs67]

Unfortunately if that smile is like mine it's only painted on cos I feel guilty for moaning. I know my new liver has made a huge difference but in other ways I feel worse. My mobility because of the arthralgia is awful and is getting worse as time goes on. Really struggling 😢

[Hidden in reply to raqs67]

Sorry to hear you're not feeling too great. Just think how much more poorly you'd be if you hadn't had the transplant. Have you spoken to the consultant at the liver clinic about your issues?

[raqs67 in reply to Hidden]

Please don't get me wrong, I'm totally grateful to be here and able to see my grandson growing up. I just didn't realise I would have other albeit small complications compared to others but still life impacting. Yes I've spoken to my consultant but I think most of it is medication related and can't do without that 😊