Dear lovely people,
Hubby is preparing to come home today... The wound is massive gape which is to be managed via community nurses...
Not sure what the future will bring... Sometimes I find myself smiling - and then think, NO! Don't jinx anything...
I know all of us are on different journeys but we all have each other on here to support...
Praying and hoping that we all make it through our individual journeys...
Lots of love,
Pear
Dear Pear
After everything I think you can allow yourself a little smile. We have to give & take them where we can. As always thoughts and prayers are with you and yours. Happy homecoming 
X Cibble
Dear Cibble,
The ward team have given us such confidence boosts that we came home feeling so positive... There will be lots of visits to the hospital no doubt but we would rather this than being where we were a few weeks ago...
A reminder of how life is so precious and each and everyone of us is touched by one another's experience of this cruel disease.
Love to you and your family Hun,
Pear
I hope that each and every day is a step closer to recovery. Best wishes to your husband, yourself and your family. You have all been so strong throughout this ordeal. I admire all your strength and you have been an immense inspiration to me. Take care xxxx
Dear Mormer,
Over the years I have hung on to words and different accounts of what people had experienced - all through this site. I was hoping so much that my posts would help people - often it's me who needs the help though!
It's these words of support and care that have helped me this far and will give me the strength to face whatever comes...
Lots of love,
Pear
Brilliant news Pear, we shall all smile for you...xx
Thank you Brummi😊
That's so good to hear. Continued prayers for healing and a quick recovery!
Thank you Jean😊
glad your getting home and thank you for your support as well
Great news Pear. Being back at home will help him recover quicker and more relaxing for all of you.
Dear Marianne,
It is another milestone although we are back in on Thursday - just so happy to be home.
Thank you😊
Pear
All the best Pear, hope hubby stays well- just recently joined this group and what a lovely bunch of people on here. I am getting great comfort and info from you all. My husband out of the blue discovered he has Haemochromotosis which has given him a meld score of 15 and we are booked into St JAmes Leeds for a transplant assessment in sept. Feel like a bomb has gone off in our lives but he keeping healthy and we are in good hands I think at Leeds. All the best for the future for your family
Dear Katherine,
The good people of this site have never let me down... I am not very medically literate so find myself quite lost with it all - these wonderful group have always taken the time to explain things to me - even a few times - without feeling annoyed!
As this is all very new to you - I would suggest you keep a diary of symptoms - when/what brings it on as well as questions to take to clinic with you. I always felt overwhelmed at appointments and never quite got to ask the right questions.
Please keep us updated - and do not hesitate to ask/clarify anything you are unsure of...
Yours truly,
Pear
Thank you pear, I think this forum is going to be my life line. Struggling with well intended words from friends and family about how the liver regenerates (not in this case) to 'he will be fine' to what seems total denial from people that my husband is seriously ill. No doubt as he looks the picture of health on the outside at the moment. So it's great to read people's stories who are in the same boat as us
Hello,
The local hospital said they would wait till everything practically failed before they would even consider sending him to a liver centre - it was the amazing people of this site who encouraged me to not accept this and pursue other options - I also have family who were not very well informed and often made generalised comments - this place has been my place of sanctitude. I do hope that you find the same support that I have and continue to do so...
Lots of cyber hugs during this very difficult time.
Pear
I had the same journey - haemochromatosis and a string of related conditions leading to a liver transplant at Leeds. You are in brilliant hands there.
Best wishes to Pear and hubby.
Thanks Mike-nice to hear we are in the best place -Leeds. Read your article along with the one from Dr Tachtatzis about Haemochromatosis on the Internet. We saw this doctor at our initial appointment in Leeds and she explained everything very well.
Oh very good hope he as a quick recovery love xx
Thank you😊
Dear Pear,
This is wonderful news and may you continue to keep smiling and it sounds like you are both winning the battle. I wanted to send a pretty picture but couldn't find a way of uploading a picture onto a reply! I will post one and you know it is for you!
Lots of Love
You are have truly made my day! Your warmest thoughts gratefully received 😊
Pear
I hope everything goes well and you're a star supporting and caring for him.
Thank you so much 😊
Good news Pear! Hopefully once he his home he will continue recovering - far better to be at home than in hospital. Though it will be scary for you both, but you will have to nurses coming in to see him.
Now for the next step on the journey
Hello,
We are so worried with all the bits and bobs to do with blood tests and more importantly the wound... We were told today it would take months to heal... My hubby said as long as it heals!
Thank you for your lovely thoughts.
Pear
Hello Pearshaped,
Just shows you how far your husband and you have come in a few weeks.I hope your hopes and dreams come true for both of you
in the future. Good luck and all the best.
Thank you😊
After you and your husband have been through so much, you are a inspiration to us all.I hope as you return home your next journey will bring much better health your way.
You are in our thoughts and our prayers
Thank you pau7😊
Best wishes to you both, take time to smile & cry together. Remember your team is always at the end of the phone to help you. How ever many times you need to ring them even if just a reassuring word they are there. When I was discharged our coordinator told us this, was convinced they would get fed up of the calls from my partner but they are the most supportive people out there, they probably have hear ever little question before.
Whether you ask the team, your GP or us on here, ask how ever small.
Dear Raksha,
You do feel like you are annoying them but I have become somewhat immune to it all now - we seem to be up there every other day - so at the moment we are getting quite a bit of support.
Thank you for your kind words.
Pear
Just to echo what everybody else has said. My very best wishes to you and hubby. Love Anne
Thank you Anne
Dear Pear so happy to here the good news that your hubby is coming home. I have been wondering what has been happening. I hope his wound heals soon and that you now can look forward to a long happy life together surrounded by your family. You smile away you deserve it. Sending you and hubby loads of positive thoughts as always. Lots of hugs. Ruth. 
x
Dear Ruth,
We have teething problems - meds need tweaking - my husband has taken this as being 'a sign' so is a little down. Doctors are confident that his kidney levels will normalise once the tac is at a good dosage. He has to take warfarin and said I the local clinic that he realised he has this for life. We have a bumpy road but you know Ruth I'd rather this than a few weeks back any day!
Thank you for your kind words.
Lots of love,
Pear
Dear Pear, thinking of you and hope each day gets better and better.
Best wishes
julie
Thank you Julie😊
Hi Pear, glad you got my message of good will. I just wanted to let you know that despite the turmoil you and your husband have been through and your own personal despair, you always made the time to help and advise others, me being one of many that you have supported and advised. I received much advice and kindness from you for which I will always remember and I wanted to say you have a heart of gold and deserve a brighter, happier future with both you and your husband being able in time to have a quality of life many people take for granted. I will continue thinking of you.
Julie x
Dear Julie,
I really am glad and hope that by sharing these experiences (sometimes as they are happening) will continue to give others here some sort of support.
Thank you so much for your kind words. Often all you need is an ear to listen and a voice to reassure - the good people here have never denied anyone in need of that.
Lots and lots of love to you Julie,
Pear
Dear Pear, thank you for your message also. I hope things for you and your husband are on track. I got diagnosed with an underactive thyroid yesterday..yet another list of ailments under my belt. I sat here and laughed in the end with the ridiculousness of it
Hi again Pear, my computer sent my message to you before
I had finished it...just wanted to send you lots of love too and not long until I have my first hepatologist appt on 14th Sept so I'll continue the battle. Seeing my GP yesterday was a bit of a battle to say the least and getting thyroid meds was a struggle but started dose today and hope to feel better soon
julie xx
Dear Julie,
Do mention your thyroid problem at the appointment in September as the meds and condition could influence what your consultant decides. I do hope your new
meds start to work soon.
Also sending you lots of hugs,
Pear
Hi Pear, I hope all goes well at hospital today, I guess it's baby steps at the moment but the fact he is home is absolutely amazing considering the massive surgeries and issues that have gone on. We are both rooting for you all as usual.
Lots of love, Katie & Stephen xx
p.s. Docs finally sent us a letter after last clinic appointment with feedback to those queries we had - no issues.
Hello,
Gosh I have been worrying so thank you for letting me know. Has Stephen recovered from his cold yet?
All it takes is the bilirubin to rise a little and kidney function to go up slightly and he's gone into his low mood...
We are back in the hospital during the weekend so hopefully the tests will improve.
Thank you for all your support,
Pear
It's great the day they come home pear..no more stress of daily hospital visits and not knowing what will happen when you get there...A hard journey indeed but now your husband is home it is the start of a new journey of moving back to happy days to come..I wish him a good recovery and a happy future ahead for you and your family Xx
Dear Ballie,
We have been to and fro from hospital as hubby's bloods vs meds are not quite there yet... With our super district nurses looking after the wound -he is a bit more positive...
The thought of the liver dying like the last one lingers over everything - we are trying ever so hard to focus on positives. My husband says he treats every minute of everyday as a gift and cherishes these...
Thank you Ballie for all your support,
Pear
Awww I'm sure you will get through this pear...The only advice I will give is to take one day at a time pear it helps you cope
Pear I think the new liver will be fine they will do all the bloods to make sure that everything is as it should be. .as for the wound my husbands took quite a time to heal as he was opened up multiple times due to infection but in the end it healed well so try not to worry..anyway hope it's all good news now that he's home..It will take time but he will get there in the end pear Xx
Dear Ballie,
The wound has begun to form blood vein looking things and seems to be filling out - hoping to for a vac pump if its approved which may help.
Thank you so much
Pear
Awww Pear it can be so hard in the beginning trying to overcome one problem then another crops up.but it will settle Pear it ju takes time..hope things settle down soon Xx
Hi Pear, thanks for that - I didnt think to mention thryoid to hepatologist. Im on the starting dose of levothryoxine and I must admit I feel better after only day 2 of taking it. Thanks for the ever useful words of wisdom
love to you and hubby
julie xx
Really good news, answer to prayer, hope he will now be on the road to better health. X pau7
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