Listed at last

[Ph1ldad]

Hi everyone, just thought I'd share my good (?) news; I've finally, 17 weeks after diagnosis with HCC, been accepted on the liver transplant list at Birmingham. Any advice will be gratefully received Phil

[AyrshireK]

Hi Phil, seems to have taken an age for you but glad (like you say ?) you've finally got listed.

We've not found the 'living on the list' too daunting (so far). We've got a grab bag packed with all Stephen's stuff for the hospital. When the phone call comes he's going to go in an ambulance - it's a 2 1/2 hour trek in good traffic from our house to Edinburgh and I don't fancy driving it if I have been wakened in the night or with the inevitable stress of knowing what we are driving through for. I am going to get the house together and follow on with our cat and my stuff for the possible 3 week stay away from home (fortunately got the caravan sited 10 mins from hospital so i've somewhere to stay). Also, as others have found out sometimes the transplant doesn't happen so we'll need my van as transport for getting home again should it not do so.

We've made sure we have mobile phones with decent phone coverage and if we go out together (keeping relatively close to home) we have the phones and Stephen's grab bag in the car. If I pop out for shopping, I take the mobiles - he has the landline. I've discussed with Stephen what he does if I am out when the call comes and hopefully all will go smoothly.

In his grab bag he has PJ's, Slippers, dressing gown, change of fresh undies, wash kit, towel, his current meds & list of what he takes, glasses, money, and a book - chances are you can be in hospital up to 12 hours or so before you know whether the transplant is happening or not.

We've managed to not be fretting every minute as to whether we've missed a call or listening all the time for the call in the night, when/if it happens it'll happen. We have set up 1571 on our home phone in case they call during one of our long chats with friends and family.

I guess no matter how prepared you are it'll still come as a huge shock when the call comes and no doubt we'll still go into a mad panic.

How close are you to Birmingham? Have they sorted out the transport arrangements for you?

The worst we've found is the inevitable worry that I guess most folks go through being "Will the call come in time?" and "How much more poorly will I be before it comes?" These thoughts get Stephen really down at times so I just urge him to look at the post-transplant future and try and inject some positivity.

Anyway, keep in touch Phil, all the best to you and hopefully your wait will be a short one.

Love from Katie xx

[Ph1ldad in reply to AyrshireK]

thanks Katie your advice and preparation sound perfect.I live in Stoke so only about 45 miles away but, as this is the busiest part of the M6 it can take between 1 and3 hours to travel. My partner lives just round the corner from me and regularly does the run for her masters degree so she's happy to drive. My thoughts are still with you and Stephen and hope your wait isn't too long. ATB Phil

[Bolly]

Hi Phil and glad to hear your news. Katie is obviously your best and most knowledgeable source of info and I see she has already replied.

I would just add, when like you I was diagnosed with HCC a friend who had previously gone through cancer treatment advised I set up a 'blog' online fiona-onwardsandupwards.blo... I used Google Blogger and my blog entries now report little to do with cirrhosis or HCC! This was to use as a diary for friends and family. She said it became exhausting frequently repeating herself on the phone or via email to supportive enquirers as to how she was, so she wrote all down on a blog and sent links to friends and family. They could pop in and read the blog when they liked, or got a notification via email when I had added a new entry. I did my 'blog' anonymously as I didnt want employer and others to know I was HBV+ even though undetectable and on treatment. All they knew was I had cancer and with a woman most assume breast cancer.

There is an excellent blog by a liver transplant patient here: davidkallin.wordpress.com/a.... David used wordpress for his blog, I dont know how to use that.

While you wait for 'the call' are you receiving any HCC treatment to slow the progress of the tumours?

[Ph1ldad in reply to Bolly]

Thanks Bolly I'll be sure to look at your blog. I'm not on any treatment yet except for carvedilol for the PVH and the tumour was only 1.6 mm in April so I'm hoping to have had the TP before I need anything else☺. Thanks again, Phil

[Bolly in reply to Ph1ldad]

By the way Phil, if you do check out the blogs, remember they are 'backwards', ie the most recent post is first and to go back to the beginning there is usually a calendar menu on one side of the screen for you to click on- mine is titled 'Blog archive' and has the years showing.

[Ph1ldad in reply to Bolly]

thanks bolly. Been a long time since I blogged and the reminder is most useful

[angse]

Hi Ph1 dad. Can't give any advice as am not that far along, but I wish you the best of luck congratulations Angse

[Ph1ldad]

thanks angse. Bit apprehensive but hopeful☺

[bill-i-am]

Hi there. As Katie says, pack a bag ready. I kept mine in the car so that I could drive straight there if required. I packed slippers, dressing gown, wash bag, and underwear plus a photocopy of my prescription & a few of each of my tablets. I'm not a reader but I did listen to music post op. Think what relaxes you as its very boring on the ward but you won't be able concentrate on much. I found that we were too far away for taking laundry home so I used the hospital gowns. Then organise your phones, make sure your mobile is always charged & phones are handy day or night. Read all the literature the hospital give you so that you are informed, especially regarding the lines & drains that will be in place when you are in ICU. Can be a shock to loved ones so best to be prepared. Organise close family & friends so there is a plan to follow when the call comes but do be prepared for being called & returning home again several hours later.

Then really it is a matter of carrying on with life and not going further than 2 hours from hospital but the main thing is try & relax. Keep as healthy as you can & don't worry. I will try and answer any questions you have. I am now a month post transplant after a 9 month wait. So congratulations on making the list & I hope all goes well for you.

Bill

[Ph1ldad in reply to bill-i-am]

Thanks Bill, the advice has been duly noted keep my mp3 charged lol. Thanks to you and everyone for the excellent advice. I'll keep you all posted.

Thanks again, Phil

[mrsmerlin]

No advice, just wanted to wish you a short visit to the list. Xx

P.s. My hepatologist recommends a grab bag for all her patients in case of hospitalisation.

[Ph1ldad in reply to mrsmerlin]

Yeah, I've got two; one for first getting there and another for the stay. Both fastened together and in the boot lol. Thanks for the good wishes

[Hidden]

Great info from every one, I have been called in once but the liver proved to be unsuitable, its an experience you need to built into your armour just in case. As the stress levels go up for a while!

Good luck I am sure it will all go without an hitch

[Ph1ldad]

Thanks David, yours seems to be a common event! They've told me that "any old bucket of slop" should be ok lol, so hopefully I'll not get called in too often on false alarms.

[moxoa]

Hi, my husband John (66) had transplant at QE birmingham 6 weeks ago after 3 1/2 weeks on the list. He was a priority due to UKELD of 61. First call came within days at 2pm ish. John told not to eat or drink & they'd phone back in an hour. Unfortunately it was a no go but a good trial run. It's a very stressful time & he had to stop water tabs because of sodium levels. He had a lot of acities & fluid on his left lung I was v.axious thinking he'd be too ill for transplant. Call came through at 3.30am, were local & told to go to hosp at 4.30. It was 9.30 before John went to theater. During that time he had ECG, obs, bucket load of bloods (x ray & acities sample were taken previous week during a drain) we were in an examination room till about 6am & then moved to a bed. Staff were v.nice, helpful & reassuring. For me I took I pod, kindle, biscuits, wash stuff etc. John is doing v.well like a new man. Lost a lot of muscle & strength which is coming slowly. If you want any more info, just ask. We thought of it a bit like going into labour, bags packed etc. wishing you both all the v.best & pray you don't have to wait too long, Anne-Marie

[Ph1ldad in reply to moxoa]

thanks anne-marie, glad your hubbie is well on the mend. I just feel a bit of a fraud being asymptomatic except for varices and fatigue, but would like to get done whilst I'm still fit enough to recover rapidly. thanks again, phil

[pwbr]

No advice to offer Phil but very pleased for you and hope things now move along at a decent pace and with the outcome you desire at the end of the process

Best wishes

Peter

(pwbr)

[Ph1ldad in reply to pwbr]

thanks peter☺

[Karlacairns]

Hi wishing you all the best , my sister was on the transplant list 7 months , she was poorly before her op ,(Crohns) but it was a catch 22 she had to have it very quick , thank god she was lucky enough to have it , she was meant to have blue lite , but there wasn't any around so my husband drove us ,(we live 3hours away) from the hospital , we tried hard to have a plan , but believe me nothing prepared us for wen we got that call , my sister was very carm , myself and mum was a nervous reck , we lived in a hotel behind the hospital for the first 2weeks , wen you have your transplant you will be in ICU so you want need anything at all until you go to the ward , but if family are staying with you they will need a suitcase packed , my sister liver has been a great successes , but now needs a bowl op ASAP but is to weak at the moment , good luck sending you prayers you don't have to wait to long , we will never forget the fantastic family who gave us my sister back xx

[Ph1ldad]

Thanks for that Karla sounds like you had an eventful time. Give your sister all my best and I hope she becomes well enough for her surgery; my cousin has Crohns and I know what a bad experience it can be. Thanks again for your experiences, Phil

[dizzime]

Hi there, so glad your on the list and I hope you get the phone call soon.. I had my transplant a year ago and like yourself was ready for the phone call. The thing is don't panic or worry about a bag. They have every thing at the hospital you need. If you have the op you will be in their gowns any way. I stayed in their gowns well after the op as they had to be changed all the time. Other items like phones, chargers, wash stuff etc can be brought along after you get there. Just get there lol. Good luck with everything you will be fine. Keep thinking positive thoughts. It does work and keep smiling x

[Ph1ldad in reply to dizzime]

Thanks Dizime, I'll bear that in mind! It's certainly easier than the wait to see whether I was going on the list or not. Thanks for the good wishes, Phil

[Hidden]

No advice but wanted t say glad you are on the list and wish you all the best.

[Ph1ldad in reply to Hidden]

Thanks Greensphene. Hopefully won't have too long to wait but I realise that there are an awful lot of people who are far more ill than I am

[H1ghtower]

Congrats, Phil, is there any advice you can give for myself, who, got end stage cirrhosis of the liver via heavy alcohol consumption for just 3 years (feel a bit cheated but theres others who never drunk at all with the same so can,t really complain) childpugh c. I stopped drinking, but, replaced it with canabis which is inoccous where the liver and life expectancy is concerned for people in our situation at least (i'm not advocating weed for general use though as it has its own set of cons). My GP doesn,t know if telling the transplant people about it would diminish my transplant chance. I know they wouldnt even consider me whilst i was still drinking for a month after being diagnosed and i havent been back to my specialist since for reasons i can't explain or understand myself. I know there are much more deserving transplantee patients out there but i would like to be put at the bottom of a long list than not at all. I think "hope" whether false or not is the only thing that could lift me out of the abyss......P.S. Sorry for being so melodramatic, lol.

[Ph1ldad]

Sorry Hightower I don't know much about alcohol-induced cirrhosis except there is a chance of some regeneration of the liver if you quit completely and follow a good diet and lifestyle. My cirrhosis/cancer was caused by Hepatitis C from which there is no way back. I have only ever been a low to moderate drinker especially since the mid-nineties when I was diagnosed. You need to contact your GP and ask for a consultation as that is the only way of getting specialist help up to, and including, listing for a transplant and help with addictive behaviour. Good luck, Phil