First false callout

[Ph1ldad]

Hi all, just letting you know I had my first callout on Wed last. Phone went at 20:20 and we headed to Birmingham. They told us that there was no certainty and it turned out that it wasn't suitable and they sent us home at 02:30. The experience was very surreal and goes to show that you can be called in any time from being "listed"; I had only been on the list 12 days! It's still a bit frightening but I reassure myself by saying if anything goes catastrophically wrong I'll not know it because I'll be asleep lol.

[bill-i-am]

Good news though, shows they are thinking of you. Now you know the drill it's not so scary. Just call it a practice run.

Best wishes & here's hoping next time you are successful.

Bill

[Ph1ldad in reply to bill-i-am]

Thanks Bill, not scary but I find that every time the phone rings I check the number Like you say, a good practice run

[Hidden]

Hi

I have had that happen, its good to have a practice run as we founds most entries are locked at that time.

Good Luck

David

[Ph1ldad in reply to Hidden]

Hi David, it was strange in that there is only one entrance open and there's a security guard sitting just inside the door. Everyone was very helpful tho

[AyrshireK]

Fingers crossed it won't be too long until the next and hopefully proper call for you Phil.

All the best, Katie x

[Ph1ldad in reply to AyrshireK]

Thx Kate. I thought you'd been called in because you'd been quiet. What got me was the speed. The consultant said I could have any old rubbish because I would be fit enough to get through it lol. Fingers crossed for hubbie, Phil

[AyrshireK in reply to Ph1ldad]

No we're in for the long haul it seems .......... sadly!!

Been quiet 'cos we've been mulling over a bad clinic appointment and battling with DWP for PIP benefit (now preparing for an appeal tribunal in October).

At the last transplant clinic we saw a surgeon instead of a consultant and he gave us a lecture on how the list works (as if we didn't know) and then merely went over the latest blood results (6 weeks old) and said that although hubby's health and liver haven't improved his latest blood results have and actually as the bloods stood then he doesn't actually match the criteria for transplant. May never get one or the wait may be years - unless something drastic happens.

So bit of a mess really, still listed and still going to be continuously monitored but really now either going to stay as is or only get a transplant if a serious dip in health or blood results happen. Left the appointment feeling really depressed. Not much of a life is it when you're shattered all the time and spend more time in bed than out of it and get a bit befuddled and can't do much that you used to enjoy then being told this might be how his life is for keeps unless you get more poorly or more correctly if it starts to show in blood results. He obviously met the criteria as of 20th June but doesn't now. The splenic infarction has killed his spleen so having no spleen has improved INR and blood platelet count, he's gained more weight since starting on the supplements and most of his other readings only marginally out of range.

Anyway enough of that, hopefully your call comes again soon and it all goes swimmingly. We met a couple at our last appointment, the chap had been listed a fortnight at the time of his first call on 17th June - we'd met them as hubby's assessment week started. Sadly he hadn't had it at that time but at the clinic he and his wife were there and he looked great and it turned out he'd had his 2nd call and it had gone ahead on 13th August and he was already feeling so much better and he certainly looked it. We were so chuffed for them both then went into our appointment and got hit for six.

Best wishes to you Phil, hope you get your chance really soon and once you do, live life to the full.

Katie xx

[Ph1ldad in reply to AyrshireK]

Heck, is nothing straightforward. I guess I'm fortunate in that I know I wouldn't qualify for any government assistance so I do't bother applying; one thing less to stress about. I had the opposite approach when I went for assessment; the surgeon said no probs but the hepatologist wanted a cardiac stress test! That delayed me by six weeks.

They can't take you off the list just because there's been a marginal, and probably temporary, improvement in the results can they? I wouldn't have thought that that would be practicable in that, when the test results worsen your hubby would have to go through the assessment procedure again! I despair at doctors sometimes. They throw these asides into a conversation not realising they have the effect of a hand grenade. Try to keep cheerful and stay in touch. Our thoughts are with you, Phil

[AyrshireK in reply to Ph1ldad]

Thanks Phil, hubby had his cardiac stress test etc. as part of his assessment so it all happened within the one week. On decision day we were told that his blood results were always only marginal and that our wait could be a long one - but it was all systems go with listing, having to have that embolization operation before they could think of transplant ops, putting him on supplements to beef him up in readiness for the op & recovery (which have worked 1 stone and a half on since assessment). He obviously met the criteria back then and we've just been merrily going along doing everything they've asked - 2 fillings, 4 teeth out to prevent post transplant infections, doing the daily strolls they suggested, eating everything they've ordered - following all docs orders.

We went nearly 5 weeks waiting for an appointment for clinic so having had let downs before when promised appointments never arrived I had to give the transplant team a ring and found appointment hadn't been organised (meant to be every 4 to 6 weeks). This seemed to spark surgeons 'lecture' at clinic, we were treated like i'd phoned to chase up a transplant which couldn't be further from the truth.

He mentioned people getting improvements and then being removed from list, I hope this isn't a plan for hubby, his levels are obviously up and down and like you say we can't go on and off the list with this.

Think some docs (especially surgeons) need to remember that it is not just body parts they are messing with but people with dreams, desires, lives to live etc.

Anyway, we continue waiting. All the best to you, hope you get sorted quickly.

Katie xx

[Bolly]

Seems like many people have this first false callout but I bet your heart was racing! Fingers crossed you get the next call soon.

[Ph1ldad in reply to Bolly]

Hi Bolly, it was very strange, just like meditation trance and didn't come down 'til I got home. At least I know the system all works Thx for the message

[226mt]

Hi

[226mt]

Keep trying to send you a reply phil but my mobile has a life of it's own...trying to say we have been there. and got a speeding ticket on the way to Cambridge lol...anyway was sent home as the liver was not. suitable..that was the same day as my husband was listed so we were. not prepared....anyway he got his a week later..that was yrs ago..since then he has had another two so three in total ...but doing great for the last 4yrs...anyway Phil good luck and i'm sure you will be OK and have many happy yrs ahead of you.

[Ph1ldad in reply to 226mt]

Glad to hear your story but a shame about the ticket! I hope that the next call comes at the same time: The M6 is really clear at that time of night and even the roadworks didn't hold us up. If I'd have been driving... well there would have been more than one ticket lol

[barclay12]

Hi.

It's strange feeling when you get that call. I remember feeling remarkably calm, even the drive to the hospital was surreal.

Waiting for the phone isn't the best place to be!

Best wishes for the next time. I hope you don't wait to long

Michelle

[bill-i-am in reply to barclay12]

Hi Michelle. How are you doing? Can't believe it's 8 wks ago. Only been back once so didn't manage to see you, appts have been at local hospital. I feel so much better now, even managing to do some DIY jobs that I couldn't manage before the op. So very grateful. Sorry to jump in on your posts Phil but Michelle was in the next Bay to me in HDU!

Best wishes to all.

Bill

[Ph1ldad in reply to bill-i-am]

No problem Bill. Michelle, Every time the phone rings now I check the caller id, just to give myself 2 secs of early warning lol and can't get rid of callers fast enough!

[barclay12 in reply to bill-i-am]

Hi Bill

I'm doing really well. Out walking the dog, I managed an hour yesterday.

The same, I feel so much better than before the tx already.

Im still going to Addenbrookes but it's every 2 weeks now. They have started to reduce my meds. Thank goodness

If you run out of DIY at home. I've plenty that needs doing. Hee hee

When did your voice come back

Michelle

[bill-i-am in reply to barclay12]

Haha, cheeky. Impressed with your walking, well done. My voice came back very gradually so was only back to normal last week.

Keep up the good work

Bill

[barclay12]

Hee hee. I was exactly the same. I felt quiet unsociable

I not going to say "you'll be fine" because we are all different and have different things wrong with us, but Bill and I are both doing really well.

I hope the next call is successful

Michelle