Well it’s been just over a month since the TX and when your told it gets easier by the day I can tell you all it 100% does as you can no doubt guess I’ve been very lucky so far and had no complications regards transplant at all and my badge is healing nicely I’ve started to walk more each day not miles but started off on 5min walks and now up to 30min walks it makes me very very positive about the future.The meds still make me feel odd and very shaky in fact some days the tremors go right through me but you do start to get used to it and as they lower some meds it gets easier especially the steroid can’t wait to come off that completely started off on 20mg per day and now down to 10.
I think about my donor a lot and what they have done for me it’s unbelievable to be honest and I purposely wanted to wait before writing to the family but feel the time is coming so will sit down with my donna and do it very soon.
I realise most of you are very ill and some are awaiting transplants please don’t think I don’t realise this as I most certinally do I just want to spread some positive news to you because we’ve all had bad news
Take care
Huw x
Written by
1football
To view profiles and participate in discussions please or .
39 Replies
•
I'm so pleased for you, it's lovely to have some good news. My consultant said I will need s transplant but not yet. I just wish I could lose weight, I go swimming but walking is very hard as hurt all over especially my feet due to fibromyalgia amongst other things!!!
You have made me think more positively, thank you. You take care Lynne
Swimming is very good for you Lynne and make the most of it as after transplant swimming Is a big no no for at least 6-9 months due to the risk of infection, pain in your feet must be awful, am glad I’ve made you think more positive and wishing you all the very best
I would stay away from any swimming pools altogether. Just had the worst cold and throat infection of my life after going to one and I'm 18 months post transplant! Been to the beach 7 months post and was fine.
• in reply to
Omg sorry to hear this bless ya . Will tell hubby . Can’t belivee doctor said it was ok after 3 month to go swimming xx
Great to hear i had my tx just over 12 month ago I'm back working I'm a tree surgeon ,64 year old I understand people who are waiting it' frightening , I WAS worried but found this forum and saw people's stories and it really helped me .I'm glad you are doing well you will never forget your donor I certainly wont
So happy to hear your back to not only work but physical work that’s given me even more positive thoughts as really want to get back to work, yes it is frightening and forum was/is a great help so if anyone has questions fire away
Good isn’t it ? I’m nearly 4 months post transplant now and the only thing I can do is walk....and walk and walk and walk. On Friday I did 9.4 miles or 22,000 steps. I’ve started to think about a letter as well, I don’t know where to start to be honest.
Great forum this, hope all stay as healthy as you can be.
What wonderful news, so happy to read this! My son is almost 5 months post transplant now and has had a lot of his meds stopped the other week and now just takes tac, azathioprine, magnesium, 5mg pred and aspirin (his consultant said she is keeping him on the aspirin for the full 6 months as it was cancer). It is so hard to believe what he went through now as you really wouldn’t know to look at him. I hope you continue to go from strength to strength and enjoy your new lease of life x
Really pleased your son continues to improve at such a rate I remember some of your previous posts,am down to 10mg of pred but on all the usual tac,mofetil,aspirin & various others mine was also cancer.
Great to here good news and that you are doing so well. I had transplant 8 months ago and doing really well too. I was really worried about returning to work last week, I have been a litlle tired in the evening but I definitely feel stronger.
Fantastic Stuff Huw, It is brilliant that everything has gone to plan. Don’t keep apologising for your good health, it actually helps people to realise that there is some light at the end of the tunnel, and that in itself can be a godsend when you are in that dark place sitting never believing the phone will ring for you. All of this good news during the World Cup as well. Onwards and upwards mate.
Thanks ray for the very encouraging words like you said I want everyone to know never give up that call will come and yes enjoying the World Cup and cricket 😊
Great so hear you are doing well, hubby is 6 weeks post TX tomorrow & is also doing well, I worry about him over doing it as he seems to have more energy than me at the moment.
He is currently going through a patch of hair loss but has been told it will come back, it's just starting to return on arms and legs & other bits
I haven’t posted anything in a long time. Been very depressed. My liver is functioning. My Meld score is 7. I am fixing to turn 61. I am in the USA. I saw my liver doc today. She said I was doing ok. My dilemma is I just lost my job as a medical transcriptionist after being with a group of radiologists for 13 years. I had great benefits, health insurance, the best anyone could ask for and now soon to be gone. They upgraded their computer system and in the process eliminated my job. They kept stringing me along saying they didn’t know if they were going to keep me or not but in the end they didn’t. I found out I have NASH cirrhosis last summer. Insurance runs out in one week. I can’t afford to keep it. I’ll be lucky trying to keep a roof over my head. I’m divorced and have a son who suffers from depression himself living with me who is unable to work so I take care of him too. I just don’t know how I am going to survive. I am going to lose everything I have worked for all these years and now with cirrhosis I need that insurance coverage more than ever. I didn’t have to pay for it with my employer. They covered everything. Loyalty doesn’t mean anything anymore when it comes to your job, doesn’t matter how long you have worked for a place. I am sorry to keep rambling on about my situation. I realize others here are a lot worse off than me. Liver doctor said today that I’ll probably be ok for a few more years before I start having major problems but needed to at least get an ultrasound every 6 months to check for it turning into cancer but also said if it did turn into cancer without insurance I wouldn’t be put on the list, only insurance covered would get on the list. I am alone with all this. I have no family except my son and he cannot supply any moral comfort to me. I don’t even have any close friends nearby. I just have no one that cares, no one to help me with anything. Everyone has their own lives and problems to deal with. Being alone is hard. I am looking for a job but no luck so far. Who wants to hire a 61 year old? I’ll be ok financially for a little while but that will run out sooner than later. I’ll have to deplete my little bit of retirement saved to survive. When that’s gone, I might as well go ahead and kick the bucket. Pray I find a job please!
He’s doing ok but said the tremors are horrible . He’s had a few tablets reduced he’s on 3mg of that Tac morning and night . Then 100mg of mycophenolate morning and night. And prednisone 5mg on morning . And co trimoxazole 480mg on a Monday Wednesday and Friday . Also aspirin . What are u on hue. The doctor said it’s the tax which causes the tremors but don’t know if they bring u right down on them ?? All new stuff ! X
Hi,am on 5mg tac morning and night,100mg mycophenolate morning an night and 10 mg pred and same on other meds also amlodipne (blood pressure)& ranitidine I was told it’s the tac regards tremors.I would defo stay well away from swimming pools thou can be a nightmare for people on these meds as there a bit of a breeding ground for germs . You still on weekly visits to clinic? We do Mondays now which are ok if early appt but nightmare for bloods. X
Yer gonna tell Karl regarding swimming . No he goes every 2 wk now on a Wednesday. We got in really quick as didn’t need any meds . Bloods was straight in and out . Keep well love and hope ya meds come down more each week . Xx
Good luck - my husband is 6 months post transplant and we have sat down several times to write the letter but the words aren't coming yet. We will write as we both feel the need to express how grateful we are for this gift but it's difficult as you know they have lost somebody and must be grieving. He still has the tremors bless him but we are just grateful he is still here with us. Initially he refused a transplant - think it was just fear but my son (16) and I almost forced him into accepting then he admitted he was wrong and that it was the best thing he could have done. He wears his transplant tshirt with pride and will talk about it to anyone. He returned to work after 3 months and we have just been on a cruise - at the moment life is fantastic - little niggles but he's here with us.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Feel Very Ill, Ready to Give Up
Yellow eyes and rude strangers? 
Consultant: “no offence but I don’t want to see you for at least a year”!
Post transplant recovery 
