Phew!!! Been tough and busy today .
Surgeon been in, artery blood test done, social worker, psychiatrist , Feed machine training, physio. Ascitic fluid extracted for testing ( very pink)
All I need now is you guys and galls to give me a clue what questions to ask tomorrow after desition is made! Aaahhh... please help me!
Hi there, That's a difficult one because whatever questions you need to ask are based on what decision you get. I was given my decision by phone at home 2 days after the assessment. The decision was yes, I would be on the transplant list as soon as I had filled in the paper work that they were sending through the post. The paperwork took about 6 days to reach me. It was posted back first thing the next day by recorded delivery, lol. If the answer is yes you usually have all the booklets and instructions that they give you at assessment to read through that will answer a lot of your questions. If the answer is no to going on the transplant list then will be a lot more questions to ask, the first question being Why? Be reassured that they don't go through all the expense of assessment lightly. They would only normally turn someone down for transplant if they didn't consider transplant to be in that persons best health interests. You are going through one of the most stressful times of this illness, in your mind you are reliving every comment made and questioning if you are saying the right things and sometimes making far more of comments made by consultants than were meant. Try to stay calm and keep positive (Very hard I know in these circumstances). We on here are all rooting for you and hubby. All the very, very best. Alfred
Thank you Alfred, I feel like I’m living in a dream this week! Expect to waken and find out it was just a bad dream!
Stay calm.Stay positive. You won't change the outcome by worrying.Look at all the help your hubby has received this week, that won't stop whatever the decision. He is in the best hands. Keep that chin up! Alf.
Totally agree with you, this ERI is excellent , all the nurses, doctors and everyone involved have been absolutely fantastic. Be good to sleep in my own bed tomorrow! Oh! And get the dog back home ..
My fingers and toes are crossed tonight.
Agnes
Sending good vibes to you. Try to get some sleep tonight you will feel better for it tomorrow. Wishing all the best. Alf
Hi there,
RHI are fantastic, you are both in great hands. I had my assessment done in September 17, and was initially told I could not be listed due to a shadow on my lung, not reported by local hospital even although they had been checking me for fluid in lungs, but as I was then on RHI lists they had a Professor for their respiratory team have a look, and I was listed 6weeks later and 1st call for transplant next day, then 2nd call for transplant 5 days after that.
If there was anything wrong with the tests to date you would probably already know, I was told about the shadow the afternoon of the chest x-ray.
Advice for tomorrow - keep calm, eat lunch and probably dinner (5pm), the day will drag in, especially the afternoon, when all you can both do is wait, when they are ready for you they will come and get you and take you to a room to get the decision. If yes, you will sing the forms them and your hubby will be on list from Friday evening, so be prepared, you never know when the call will come, I was surprised when it was less than 12hours, and wasn't totally prepared, but managed anyway. If no, they will explain to you why, and if listing is possible at a later date, and what needs to happen to allow listing.
The team are their for you, any questions just ask them, nothing is a dumb/stupid/silly question, this week has been about the team getting the info they need and the info you need, and they will want to ensure you have all the info you want.
Did you get a visit from a transplanted this week, I know I did and it was invaluable, as they could speak to me frankly and in non medical terms, allaying my stupid fears and worries. If not, just keep posting here, we are all either going through the process, or have gone through it.
Good luck for tomorrow afternoon/evening, and remember to look after yourself as well as your hubby, you will be of no use to him in a hospital bed when that call comes, and when it does and he goes to theatre, try not to worry as he will be in the best of hands, and he will want to see a smiley face when he wakes up.
George
A visit from someone who has had a transplant is the only thing that hasn’t happened as he is in a different ward due to painters being in.
Hi Yuiop
Have been following your posts and know exactly what you’re going through. You’re nearly there! Its a difficult week but also so exciting as you’re getting the help and support you need. You’ll be told the decision probably by tea time after the afternoon meeting. If listed your husband will be ‘active’ immediately and you can expect a call anytime! If he is not listed they will fully explain why for example he may need to complete a course if antibiotics for an infection or some other issue that can be resolved and may be ‘inactive’ for a few days. It is emotional and I’m sending my love and support to you both xx ps. My husband is 8 months post transplant at ERI and doing great. Fingers crossed you’ll soon be post transplant too.
Thank you for your encouraging words. The day of reckoning is upon us. ERI is amazing, everyone here has been better than perfect! And the best thing is, something is being done for him now, he’s so skeletal, anyone seeing him would assume he has cancer! But now he’s on overnight feeds, and an excersize programme that he WILL be following. Onwards and upwards whatever the outcome. It’s hard watching your husband waste away and nothing done about it. I couldn’t than this hospital enough,
Agnes
No idea at all lol.
I wanted to stop by and send you buckets full of support and healing, and hopefully some sleep.
Loads of love
Rita xx
Thank Rita, the bucket just arrived! It put a smile on my face. You people on here are amazing support.
Agnes
Hi Yuiop,
Sending you best wishes,
Mary
Hi, glad he has made it through the tough week.
Once has been accepted you go & sign the consent forms only once the forms are signed he will be live on the list. The consultant will explain everything in detail before the consent forms are signed to make sure that the process is clearly understood. If you don't feel ready for it you can postpone the signing of consent forms as some people find it overwhelming & need to get their head around what they have been through with the assessment & then being accepted. Once you have signed make sure you pack an overnight bag with small essentials in & you need to he ready at any time
We were lucky as it happened within 4 days of signing. So while I was dealing with the realisation of the phone call and that overwhelming sense of relief & oh my god what if, hubby didn't have that panic set as he was down to theatre an hour after he arrived at the hospital.
Haha, that's a good sized bucket, thank you x
4 months post transplant
BBC Radio 4 tomorrow
4 months post transplant.
Cirrhosis stage 4
