Great news :-)
Re: My husband is going to have resection surgery! (13 replies, posted in Good News / What's Working)
I'm sorry that this disease has you feeling this way. For me, you are one of those on here that got me through my darkest days asI learnt so much from your posts. Others will continue to learn from you - your mark on this forum is to huge.
I am so very sorry that John has passed. There is little I can say that will make this better but you and John are in my thoughts.
Shame - I would have liked to have gone to this. Was there anything of note for CC that came out of the day Gavin?
Welcome to the board although I am sorry that you have had reason to come here. There are so many people on here that will share their stories and support you through your treatment.
They can take a swab of the discharge/pus coming from the drain sites. That will show what infection is present and what antibiotics will/won't be effective against the infection.
I am so sorry that your mum has passed due to this disease. X
Hi Jules, sorry can't help on the sirt tax but it's good to see you here and glad that your mum is symptom free.
I don't have any nuggets of wisdom but I'm just dropping in to say hello - good to see you hear:-). I think about you often x
Welcome to the forum although I am sorry that you have been diagnosed with this disease. I echo what others have said - get a second opinion at a specialist centre. Everyone here will help you as you start to understand this disease and support is always here.
What a great friend you are. Now you are here you will get so much advice and support.
I too am shocked at the complications risk post surgery. Yes, complications are a risk with some surgeries carrying higher risks than others but I would get that verified and ask specifically what complications does the doc mean.
If it were me or my friend/family member, as Marion has suggested I would start with seeking a second opinion at a centre specialised in dealing with CC.
Gosh Randi - you don't look old enough to have a daughter getting married!
Excuse my spelling- on the bus typing on ipad.
I really do relate to where you are. I was 39 when my sister was ill. I am a nurse and whilst that put me at an advantage I guess in having some medical knowledge, it just made the burden of responsibility harder. I too knew more about my sisters disease progression before anyone else - partly because I worked it out but partly because her doctor was very honest with me. Looking back I was the driver for some very hard decisions that I wish the doctors has taken the lead on. Be involved - absolutely - but let the doctors guide you and don't be placed in situations making decisions you are uncomfortable with without medical support. Xx
I am truly blessed to be he here today and every day with my daughter.
Much love to all of you who have lost your mums and cannot be with them today. And to those mums who have lost their child and face another day without them I can't imagine how hard days like this are but I send you and abundance of love and support to you too. Your child will not be forgotten.
You are still giving Frank what he needs and can be there with him to hold his hand, love and support him without exhausting yourself on physical care. I am a nurse and it is physically demanding on an isolated shift to provide care let alone for you as a caregiver to do that 24 hours a day.
I had never noticed your signature before - I have now and I love what it says.
I have no idea what place I would be in if I were ill but from a family member perspective, I wanted to help my sister gently fall from that cliff. There were no miracles coming her way - if there was any chance I so would have helped her hold on. Perhaps it was easier for me, there was no ambiguity about how ill she was and past the point of any return, even if I had to fight to get the doctors to admit it. If I could have pushed her earlier I would.
Being the caregiver can be so hard and it can feel like the loneliest place in the world. There are no easy answers and sometimes it takes all your strength just to get from day to day. At times like that that's all I did, got from day to day and tapped in her for all the support I could get.
Re: IIIntrahepatic post surgery...My story and welcome to it (18 replies, posted in Introductions!)
Welcome to the forum and thank you for sharing your experience. I can't comment on the guilt that you feel as it was my sister that had CC. I fail to see though how anyone can move on emotionally so quickly from a disease like this, regardless of whether it was diagnosed early, less severe or been told your cured. Use this forum to get the support you need and to vent your thoughts. Someone can always relate to where you are and help to get you through and no one will ever judge you for what you write.
I am so sorry that your husband has passed. Three months is no time to begin to get to grips with this disease let alone to have him taken from you.
Hi Kris ,
I so hope that Mark starts to get a reprieve from all these side effects.
Rant away - you give so much support to people here. Let us prop you up and support you for as long as you need.
Thank you everyone for your messages of support.
Re: California 12 year old Christopher Wilkes diag w CC (7 replies, posted in General Discussion)
It is incredibly sad. I have no words to describe it.