Does anyone no how long before the numbness goes away! Some doctors say it will go after 8 months , some say it will never go?
Post transplant : Does anyone no how... - British Liver Trust
Post transplant
41 Replies
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On my stomach it's still numb. I'm about a year and a half post transplant. It has improved a bit though.
in reply to RodeoJoe
Thanks for that , what do you feel inside painwise?
RodeoJoe in reply to
I do get an ache. It seems to be below the liver area.
in reply to RodeoJoe
Yea me to , do you exersise at all ie gym or anything?
RodeoJoe in reply to
Saw your other post about weight. I've seriously blown up since transplant from 80kg to 105kg. That's about two stone. I don't think the steroids helped to start but now I just don't know? I do love my food though.
I did a 25mile charity bike ride 7 months post transplant. And I'm just starting to cycle to and from work now the weather has improved. That's a 20 mile round trip.
in reply to RodeoJoe
Hey joe that's brilliant mate , i like my food to . I was 82kg now 96kg , went for my 6 weekly , told me everything's fine apart from my weight they said it could cause diabeties so I got a lose it ! Bit scared to go on my bike , worried about damage , !
Now there fella I'm 7 months post now n I'm just a little numb but it's only slightly, I don't get much pain mate n the exercise I do is not to much at the moment, except walking n stuff as I don't wanna get a hernia !! I believe it will all go for you , it's just different for each one of us , I'm not sayin don't exercise but try not to do to much were your stomach muscles are involved, good luck with your recovery
in reply to retwos
What date was your operation mate. Me to are scared of a hernia, glad to no someone's got the same feeling as me , makes you think a bit what's going on ! But thanks for that mate you've eased my mind , thanks and good luck to you , I would like to keep in touch if that's ok are progress should be the same !! GOODLUCK
retwos in reply to
My op was 28 Aug mate first 4 months were a proper struggle but I feel I've turned a corner , does me head in that I can trainto get fit same here put on some weight at my poorliest I was 58 kg now I'm 76 which is a good weight don't get me wrong but I don't like the wobble on me belly !!! I'm always about if you fancy a chat mate , have a good weekend mate , onwards n upwards fella
in reply to retwos
Yea I've had no problems , just like you doing my head in , was three times a week for me in the gym , now nothing ! Problem is you get lazy , but will get there one day . Happy Easter mate
RodeoJoe in reply to
I think you've got to get the right exercise. Something that's not going to put any strain on your core. So weights etc is out. Cycling or running should be ok though. However I did find running uncomfortable for months.
Walking is as good an exercise as anything else and shouldn't put much strain on your recovering tummy.
Are you seeing a dietician at your transplant clinic appointments?
I know that at Edinburgh all pre & post transplant patients get whisked away at clinic to see the dietician to help with either weight loss or nescessary weight gain.
Certainly seen one guy who was talking about his exercise regime (swimming and gym) and chatted to a patient who was only a year post transplant who was competing in various sports at the Transplant Games so I think i'd be questioning the no exercise 'rule' and see what they recommend you do to get your weight off again and return to fitness.
in reply to AyrshireK
Thanks my dietitian was happy with what I was eating , so said she I don't need to see her anymore . As far as the gym , they said maybe 12 months no lifting !
Assuming you have had a TX I still got numbness after 3yrs. Although one consultant said it may not go. One good point about it having diabetes it makes it easier to inject my insulin..
Looking good there Bob,
My husband is 3 years post transplant and now has minimal numbness.
He was told to exercise gently by walking as soon as he felt able to. After about 6-10 months he had a personal trainer visit twice a week. He was a trained medical fitness guy and he did a lot of pilaties type stretching to help with flexibility. Worked wonders.
You will get there you just need some support to do so. Do you have a local gym? Also speak to your drs surgery to see if they can refer you to someone who holds classes.
Your body will tell you what you can and can't do. If it's uncomfortable don't do it.
Good luck! Berties
in reply to berties
Hey thanks a lot , there is a gym not far away ,but there telling me to keep away for 12 mth. I work as a machine driver on a building site so it's not bad no lifting , I think my body was ready 3 mth after but that was just the brain working overtime. I think! At what cost was your personal trainer , thanks for your advice hope the rest of your weekend is good . Bob
I'm 18mth transplant & still have some numbness but lot better than was. I'm the opposite to you I have lost weight 40kgs since transplant. Wish I could still exercise all I manage is upto 4 lengths in the pool twice a week & that takes me an hour. Yep still get some pain & discomfort, but was told this is quite normal as is the numbness
in reply to Raksha1964
Do you think it will ever go away ! Do you work ! You need much moor exersise I think , I want to exersise but can't , I'm hoping exersise will take the pain away !! How often do you go to the hospital for your checkup,
18 months too, still very numb, and fatigue!! I try do do things, and after 1 hour of gentle work I am shattered, and go to sleep for 3 hours. I just keep pushing myself (gently) and hope some stamina and feeling comes back. weight creeping up managing to hold it 7 to 8 Lbs above normal 10.5 stone with just being mindful of what I eat.
in reply to PCBnPBC
Do you do plenty of walking? I push myself so much no sleep all day bed at 9ish up at 7 in morning , you have much pain ?
No don't think will ever totally go but small price to pay. No unfortunately I don't due to other conditions & suffer horrible side effects from meds. Finding this really hard as wasn't ill before tx, it just failed, worked. A busy full time job, ran a house & was a local cub leader. I wish I could exercise more, it's not by choice, but have to listen to my consultants, hard when several when have their input & my body, used to be in gym 4days a week..
Am on three month check up for liver, but with other stuff prob once a month at hospital & once month at gps, good job I don't live far from the hospital & they have been able to move everything to same hospital to make easier.
Where did you have your tx?
Had mine at queen Elizabeth Birmingham I began feeling tired about 8mths prior to my op, and my skin started going yellow and my eyes , doctor referred me to Telford liver unit, were they sent me to b/ ham I was diagnosed with end stage cirrosis , liver cancer and hep c from tattoos March 9 2015 gave up alcohol and cigarettes 28/07/15 had my transplant , normathermic regional perfusion was out on the6th day walking eating like mad ! Iwas in the gym 3times a week football training at weekends ! Now biting my nails
We're do you live raksha?
Birmingham couple miles from QE. I hadn't been ill. Daughter came in from school & found me out of it. Taken city itu on the mon, transferred QE over night on Tuesday, Weds morning consultant told my girls I had 48hrs, liver had failed & everything else was beginning to. About 40hrs they had call to say had liver, so incredibly luck, don't remember anything about it except when woke me up about wk later which may or may not be a good thing
in reply to Raksha1964
They told me I was on the list on Monday afternoon priority! 18hrs later got the call how lucky was that !! Tuesday afternoon in intensive care recovering!
Raksha1964 in reply to
Wow thought mine was quick! They are a fab team
in reply to Raksha1964
Dr Tamara parera , dr hienek merkentile were my sergeons they were fantastic people
Raksha1964 in reply to
Mine was prof Mirza, don't remember meeting him till first check up after discharge. They all fab. Only met one wasn't keen on in clinic because I asked a question had the answer snapped back, saw him next time & he was fine. Bumped into Moria one way out she was brill calming me down was so upset. But didn't take long then bit better now but not much. My girls just hug me & roll their eyes & tell me am doing so well. Their support is never ending
in reply to Raksha1964
Good to have family around you helps a lot really picks you up my wife's been awesome
in reply to
They were mine too Bob, when I had my transplant on 20th Jan 2016. Been a hard Road to travel since then. Excersise really does help, I aim for 5000 steps a day and 10k on the excersise bike.
Mornings are worst, then I get better as the day progresses.
Hope you continue to get better.
Mike
in reply to
Mike did you have normathermick regional perfusion aswell as me? They are specialists in that operation , I still find forty sips make my pain ease a lot at first , my op was in July 2015.
in reply to
Not the normothermic for me, no. I imagine that it is in its experimental phase and rather expensive, so the criteria for eligibility must be quite limited.
I had a LOT of awful pain for about 3 weeks post op and used paracetamol and tramadol to good effect, now though, at nearly 10 weeks, the only pain I get is bowel cramps and headaches. I do get discomfort just above the horizontal scar, I imagine that is loose muscle pressing down.
Cheers Bob
Mike
in reply to
Yes Mike your rite , it's paid for from charity events the experiment phase seems to work well , nhs should pay ! You take care now friend , keep going mate . Bob
Agree totally. My partner was brill to start with then decided couldn't cope anymore & walked out, had offered him this choice about 4mth post op but told me would never go anywhere what ever was thrown at him. So just me & my two daughters but they tower of strength bless them
in reply to Raksha1964
So sorry to hear that! God you've gone through all that , still going through it , one brave woman in my eyes! But keep it going girl ! He obviously did not want to no. Thinking of you 🙏
Thank you. Wishing you & your family a great Easter 😊
You need to talk raksha anytime . Back at hospital QE April 27 6 week checkup
Don't hesitate to contact me .!
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