I have mentioned on here before, about those very special people who care and look after us during our liver disease journey.
Those wonderful people who put up with us during those terrible moments of HE. Those who stand by us and help us through our Liver Transplant convalescence. Sometimes a simple thank you seem's such a small, little few words.
This then is for you wonderful people.
Hi
That is lovely Richard and so true.
I'm lucky to have all the support I have.
I too have been care giver in years gone by and I know I did it out of love for that person and wouldn't have had it any other way. Please take care Lynne
It's now 3 years since I was a "Hero" & I have to say Thank You for the recognition. Whilst my partner was ill with Cirrhosis friends & even family would ask me how he was doing. Just one person actually asked about me & I have to say that I broke down. It is very stressful & whilst I'm not saying that it's as bad as the suffering of the patient , it can be a very lonely time, especially when you come home to an empty house after spending hours every day at the hospital. Hospital visiting is very stressful in itself. Both my partner & I were very lucky that he received a Liver transplant in 2016 & is doing exceptionally well.
Once again Thank You Richard.xx
Richard
Thank you for sharing!
Trish
Richard,
You are absolutely right in all you say.
The one person who made sure I was safe and then well enough for my transplant, who stayed when many would have understandably walked away. Then sat by my bed when I woke to a whole new life, made it even better when one year afterwards, she became my wife.
Thank you, Lucy.
Jim
Thanks, Jim, I think there is many a person who must have thought at some point, "I never signed up for this?" This is particularly true for those of us who have had HE. I know I could become hard to live with, I could become confused and frustrated by the brain fog episodes, this would bring about an often angry response.
In the words of Emmet Fox, "There is no difficulty that enough love will not conquer", and it's that love that makes those carers so special.
My heart goes out to them all.
Thank you Richard for remindi g us all of how important our care and support networks are 😀
This is so true.
My lovely wife of 20 years has the "patience of Job" putting up with my moans of general frustration in not being able to do things for as long as I used to mainly down to aching muscles and fatigue.
She sadly lost both her parents within 5 months of each other last year and along with my diagnosis she has had so much to deal with. I thank her every day for putting up / looking after me as we are each other's rocks and soul mates. In essence I am a very lucky man.
Richard thank you so much for those lovely words. As you know I lost my Gary in May and what I wouldn't give to be that care giver again. Yes it's hard work, yes it's physically and emotionally draining but boy is it rewarding to see progression and know that you are contributing to keeping your loved one on track. I miss that so much. So thank you to all those on here still fighting the fight for their loved ones keep up the good work and in your dark days remember that hopefully one day because of your help and dedication you will get them back and that is reward enough.
Sending hugs to you all xxx
Great post Richard 👍👍👍, Wonderful sentiments that can't be said too many times. Carer's are there when the medical professionals are not, and never ask for thanks, just love 💕💕💕
David
Thank you, Richard..Your post came at the right time for me..I was thinking how am I going to thank my gorgeous sister who takes care of me during and after the banding of my varices..
I live on my own,and luckily I can still manage pretty well on my own.
I am dreading the possibility of a HE episode,which I haven't had yet. I have 2 good friends who check on me online every day. I am grateful for that and tell them often..Care comes in many ways. And it is always welcome.. Taking my sister to lunch this Sunday to say Thank You once again.. Family and good friends..What would we do without them.. Greetings to all who is reading this. And thanks again Richard for your presence on this site..You are an inspiration..
I am humbled by your sentiments, thank you. I think liver disease is something alot of people dont fully understand. Carers need and want to try and understand what is really causing the condition. In the case of HE l think this is important as the carer needs to understand that it is the brain being damaged that causes the uncooperative attitude and not the person being awkward. Most carers want to both understand, and be supportive, the more they know, the more they can help.
They really are wonderful people, and knowing that someone is there in our lives who cares and loves us, is a great help in the healing recovery. Well done, ga day cobber.
Wow, thank you so much for this Richard. Never gave it a thought til you brought this up, but neither my late husband or his family ever showed any gratitude towards me for what he had put me through, but still trying to help him, juggling work and bringing up and protecting our children.
Thankfully my life is amazing now, which l think of as my reward
Laura xx
Hmm! That’s really mean of them Laura ☹️. I wouldn’t be able to resist the urge to “have a go” at them tbh. But that’s me - I do not suffer ungrateful people gladly (or some such phrase 😑).
Miles
I can see beyond it Miles. They were in denial themselves, ashamed of what he had become. Life's to short for me to hold a grudge after having gone through so much. I didnt have the energy to take them on as well.
Good for you! 👍. Now get to sleep!
No no. I'm up for the day now, 🐶 to walk, work to do followed by a 2 hour workout 😀
Oh! Well I’m still awake but won’t be doing any work and certainly no workout 😁 - couldn’t even If I wanted to! And codeine hasn’t worked tonight boo hoo lol.... 🐕 to let outside in a bit though 😁. Not onto public property of course 😁👍.oh it’s a hard life 😁
Awe Richard what a lovely status to put up.Thank you. I would never have thought of myself as a silent hero but i guess its true, when our men went to war to help and protect us they are called heros, so i guess even though we arent at war like those heros we do everything to help and protect our loved ones who are sick.
It is hard work taking care of someone who abuses you mentally because of HE, hard work seeing loved ones deteriorate, and kill themselves slowly,cleaning up all sorts, going back and forth visiting, taking washing back and forth, making sure they are safe if you have to go out. As well as trying to take care of ourselves, But despite all that i wouldnt want anyone else to care for my hubby, no one else knows his needs like i do, no one else is willing to take on that responsibility. So as much as its hard work i still love him.
So thank you once again Richard for such lovely words..
Lyn..
It's a hard journey to go through especially when both couples go through the same journey at the same time although lucky I never needed a transplant but my husband has had three!
Very hard to talk to people about it especially when it's related to Hep C virus although it wasn't drug use related the stigma is always there and leaves you not able to talk about to others as if it's a dirty secret!
I kept both me and my husbands condition secret because I didn't want to share the fact that we both had hep C contracted through my husband having had been vaccinated for bulharzia in Egypt using the same needles as a young man!
It's sad that no matter how you contracted this virus that the stigma associated with it causes such a bad reaction from people!
I found this forum over the years was a place where I was never ignored no matter what problems I was seeking advice for!
Unfortunately through my journey with liver disease we didn't have support from family or friends as nobody actually knew about my condition and my husbands was explained by his liver cancer that developed do to his damaged liver!!
Although he had a bit more support because our family and friends never knew the cause other than his cancer!..on the other hand my liver disease was kept a secret from everyone and I had no support at all other than this site!
So to all of you that gave me support on this forum I thank you all for the invaluable support and advice given over the last few years💕
On a positive note although i have cirrhosis I have cleared my virus and getting on with living and my husband is also clear and has been doing well after his 3rd transplant a good few years back!
Yes support from others definitely helps when at times you feel deflated from this journey!
Many thanks for sharing your story with us. You are sadly so right about the was other people see us through judgemental eyes. This is just caused about by a general ignorance of liver disease (out of sight, out of mind). I've been on a number of the "Love Your Liver" roadshows, and trying to engage with the general public can' be hard. "No, my livers fine, I don't drink alcohol" is a common response. Others can be equally ignorant, like a guy whose covered in rather basic tattoos.
Sadly people always assume what they what to think, just because they may have read something once or they put 1+1 together and make 5. Mention you've had liver disease and you have a drink problem. Mention Hep 'C' and your a drug addict. It's just the way society see things.
There are a number of people on this site (not mentioning any names) who have contracted Hep 'C' through a contaminated blood transfusions.
Trying the change peoples perspectives on liver disease is just one of the many things I've been trying to do over the past two years. We've still got a long way to go. I've found that when you do manage to engage with people and begin to talk about the liver, they become quite fascinated, "It does 500 different things, really?" and "I didn't know that".
I'm so glad you and your hubby are now over the worst, what a journey you've both been on. I am so glad that you are here today to share your story, well done to you both.
After 6 weeks off the wine, real itchiness and other symptoms back with a vengance.. thoughts please
Futurelearn University of Birmingham - Liver translant
Seeing a liver specialist tomorrow: What might happen now?
