Hubby on list

Hi my hubby has finally gone on liver transplant list . Feel so helpless for him . How long have people been waiting for a transplant once on list . He's at Addenbrooks hospital xx

[freddie76]

Hi

Glad to hear that hubby has made it to the list.

Unfortunately there is no set time for anybody. Urgent's will get top priority as and when liver's become available. Also it has to be a match for each person. Rare blood groups can affect the wait time either way.

My hubby has a blood group that could take his own or an "o". As "o" is common it gave him a better chance. He waited 9 weeks. But unfortunately the wait can go on for very much longer. I feel for you as that wait although only 9 weeks seemed liked years. You are on tenterhooks every time the phone rings. To save that stress if you can can get a cheap pay as you go phone and leave the number with the unit and nobody else it will help keep some of the stress at bay.

Good Luck

[Hidden in reply to freddie76]

Thank you for your reply . It all seems so real xx

[Hidden in reply to freddie76]

Sorry forgot to ask how are u since the transplant. I'm just worried about everything . We have 4 kids youngest only 7 and worry about after transplant also xxx

[Chelle_]

The time on the list can be so very different for people. I am blood group 'O' and have been waiting just over 10 months, I am at Kings College Hospital. There's so many factors involving transplant and when it will and or wont come...all I keep getting told is put it to the back on your mind - easier said than done....I don't focus on my phone so much anymore, I don't worry if I have missed a call....I don't panic every time it rings. I have been waiting for a while now, to be honest I think they have forgotten me! lol....

I hope you and your Husband don't have to wait too long!! xx

[Hidden in reply to Chelle_]

Oh no what a nightmare seems a long time ! Hope u are well enough to do the day to day stuff . Hope u get sorted soon . Thanks for the reply xx

[Chelle_ in reply to Hidden]

Thank you. I am still working full time or as full time as I can....it helps me keep my mind off of things. I don't expect my call to come for anther year yet....the wait time is 18 - 24 months for blood group O at Kings. x

[Hidden]

Oh thought O blood group was one of the majority and would get it quicker xx

[AyrshireK in reply to Hidden]

The problem with O livers is they are the most common - this means that although there are more donor livers available they also have the waiting longest lists as there are more O liver recipients waiting ALSO O livers can be utilised for all blood types (they are the universal donor) so can be used for anyone waiting that is type O, A, B & AB.

Blood Type O can only receive another O liver and therefore they can have the longest wait whereas a rarer blood type has the greater chance of earlier transplant.

Having said that, the more urgent the need the higher the place on the list and the greater chance of a quick transplant.

Katie

[Miche49uk in reply to AyrshireK]

That's very interesting, I'm O resus negative, does it matter if someone is beg or positive within the O group.. I've joined the donor list although they may or may not want my liver god forbid I leave this mortal coil xx

[AyrshireK in reply to Miche49uk]

No the + / - doesn't seem to come into it. Well done on joining the donor register - they might not be able to take your liver but your other organs and even tissue, skin can be used to improve or save someones life after our own.

They can do all sorts with all sorts of organs - we did have a chap on here at one time who was Hep C positive and waiting for a transplant (rather urgently) - he was able to take a less damaged liver from a Hep C positive donor (the liver issue hadn't caused the donor's death) - the hope being that post transplant they would treat the Hep C and all would be well.

Katie

[Miche49uk in reply to AyrshireK]

That's good to know and very interesting and I asked as I know post pregnancy I had to have an Anti D injection in case I built up antibodies if I got pregnant again so wondered if that came into play with +/- O groups.

So far all tests imply my liver has recovered well but I'm yet to go back and see the consultant who I guess will correlate all the results..

I'm glad I'm on the donor list and my partner is too now.

Take care,

Michelle xx

[X19Dave]

Hi my wife was at addenbrooks they are great they could not do enough she had to wait about 2 months but did have 3 calls before that they ended up not being any good but they have to get you in as they do not have long to get it transplanted so you are in and getting ready whilst they check the new liver out

It will be the best thing and you will all be so happy after it is done I went and saw my wife the day after she had the op and I asked her who was in her bed she looked so different and so much better 1 Day after the op I was amazed

You will get there it will happen

All my best

Dave

[Hidden in reply to X19Dave]

Thank you Dave for your reply . That has made me feel a lot better x

[scoobydoo10 in reply to X19Dave]

I'm very happy for your wife and you but since you are familiar with the recovery afterwards can I ask how bad or good is it? Are you in alot of pain? They told me that my stay after would be 14+15 days with me coming back once a week for six weeks and I was wondering if I will be upto it? Will my health have improved enough to endure this? I am about a hour away from the Hospital in the city. If you could or anyone who knows about the recovery would be so much helpful. Thanks

[riverdweller]

As others have said it all depends. Liver waits are not long, as you will have gathered it depends on your blood group. I was about 4 months but I was also very ill, and like others I was called in a couple of times BEFORE I received the graft. Two false alarms a bit disconcerting, it is I know a weird and uncertain time but you are lucky, you are in a place where you can have the operation and your husband will have a new chance of life. I know how grateful I am for my life and liver. It will be OK

[Hidden in reply to riverdweller]

Thank you 😊

[AndreaWilson_Founder]

Hello Debski, My name is Andrea Wilson, and I'm the founder of Blue Faery: The Adrienne Wilson Liver Cancer Association. If your hubby is on the list due to liver cancer and you need more support or information, let me know. Our community is healthunlocked.com/bluefaer...

[gorffenaf]

Hi Debski. My husband had his transplant 3 and a half years ago. It took him no time at all to get back on his feet and get on with life, but it took at least the first two years to regain his fitness and confidence . Now there is no looking back. He was on the list for three weeks and we had no false alarms, however any longer on the list and he would have been gone anyway. As others have said, put that phonecall to the back of your mind and get on with your life as it is now. Don't add to the stress by thinking about it. Do the sensible things and always have your phone around, perhaps give a particular ringtone to the hospital number, have an overnight bag packed for both of you. When the call does come , don't rush. You have plenty of time to get there. There is also a lot of waiting so take a book or some music. In the meantime, carry on as if the wait is a long one and then you won't be disappointed on a daily or weekly basis. Good luck to you both.

[Hidden in reply to gorffenaf]

Thank u so much so glad your hubby is doing well. Thank you for the reply x

[Treeclimber62]

Had a transplant 3 month ago at qe in Birmingham the wait is stressful but it is something we cope with just try to concentrate on how much better your lives will be

[19581979]

I hope things are sorted soon. Prayers and wishes are with you.

Gx

[Denise15]

My wait was 7mths of untold stress at addenbrooks but received brilliant care pre and post transplant. The wait is awful but the end , although not strait forward for me, is really positive so stay strong xx

[Hidden]

Hang in there! I'm A positive blood type and had my transplant at King's within 5 weeks of being put on the list. Had 4 calls in that time, the first 3 times didn't happen so when the day finally came, I wasn't keeping my hopes up. I was initially told it would take 4-6 months. There are so many factors at play and all you can do is hope your husband gets his call soon. I still remember the anxiety of not knowing when/if it would ever happen but rest assured they won't forget about him 😊. Good luck!

[SunnySideUpDawn]

I was told I would wait up to 30 months, but I only waited 11. I am praying for you and your hubby! (I am with King's College Hospital)

[Hidden in reply to SunnySideUpDawn]

Thank you for your reply how are u feeling xxx

[Kate_67]

Hi I'm glad to hear that your hubby is on the list. I agree wae Freddie76 no set time. I have AIH...and every time I asked to be placed on the list I was told not yet. I waited 5years and finally only got a liver transplant because if I didn't I would die. That was on the Friday I was told that and had my transplant on the Sunday through to the Monday. I was attending Edinburgh Royal Hospital. I'm not going to go into detail after my transplant as I don't want to panic you. I'm what they say a complicated case. Everyone is different so I wish you and your husband all the best.

Take care

Kate_67

[Hidden in reply to Kate_67]

Thank you hope u doing ok x

[19581979]

Just to say still thinking of you.

Gx