Hope for future greatly improved

Just heard from Birmingham QE that, following my assessments and additional colonoscopy (ouch, that Really hurt), I am now on the transplant list (priority as my UKELD is 54).

The assessment part 1 was bad enough but part 2 was just awful.

In the meantime I'll carry on with the excersise and health regime till I get the call.

Mike x

27 Replies

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  • Oops, forgot to wish you all a happy and prosperous new year. Hope your dreams (the good ones) come true.

    Mike x

  • Good luck red1954 glad you got through the assessment at QE ,it's a lot to take in ,my ukeld was 56 when I had my assessment,n I'll be honest when I was put on the list I didn't wait long before I received the gift .can I ask what's your blood group as this plays a part in how you fit in the t/p table ,keep up the spirit n keep smilin ))) I'm 4 moths post op now n it's still hard to take in what's happened I'm so humbled by what has happened n so thankful to my donor

  • Thanks for the nice response there 😊. My blood group is 'A' rh Positive, so I'm in a good position as far as that's concerned. My UKELD has been as high as 56, although it has come down now, thanks I believe, to better meds management and better excersise regime.

    As you say, it really is humbling to think of the donor gift and that is something that I'll have to rationalise when the time comes

    Hope you're feeling well enough otherwise.

    Mike

  • I'm learning to deal better with what my donor has done for me , your in a good place with your bloods did they tell you what percent your in ? I'm really nosey eh !! No I'm just hoping that your in the small percent as I was there was a 4 % chance for me but that was good as it meant only a few people in my group so the chances of a match were higher ,if you understand that .n I've got to say there the best at Q E who I'm under as well we've probably sat in the same waiting room ,all the very best mate ,just keep yourself in a good place n all will come good for you ))

  • Well I understand the most common group is O pos at about 42%, A pos comes a close second at about 36%. If that's what you mean. I actually 'googled' that question so if anyone wishes to correct me, I won't be offended.

    The team at QE are excellent, I agree.

    Mike :)

  • You got it about right your turn will come mate ,n when the phone call comes my advice is be ready for what ever gets thrown at you , I had 5 calls each adventure different , you just say to yourself this has happened for a reason as I did you may be lucky n only get one call n get your t/p my blood group is ab n was in the 4% which works out I had a high chance it wouldn't be long which it wasn't ,soon as a match for you becomes available you'll get a call .all the best fella

  • Re1954 and retwos - as you said you've probably sat in same waiting room - you two should meet up - got a lot in common X. Good luck

  • I hope your wait is not to long. I'm 15 post tx at QE, they are excellent

  • Im ukeld 50and they comsidering wether i need to be asessed for listi have stage 4scarring p.h tension grade 2 varices anaemia lowering platelets as yet no varices.l have to go on feb then they will think again i think.what did asessment envolve..

    Ive had colonoscopy so kmow what thats like.cazer

  • Hi Cazer.

    You don't say if you're attending QE at Birmingham but I would imagine that most of the tx centres are similar as regards to their assessment processes and if anyone wants to correct me, that's fine, but please be polite.

    The first part takes a whole day and involves medical and physical tests of many sorts (full bloods, lung function, xray, ultrasound, a really uncomfortable Heart ultrasound, etc), finished off by a meeting with your consultant there.

    The second part is over two days and is about educating you, meeting the surgeon, anaesthetist, dietician and yes, another blood test. They will individually let you know their opinions of your viability. Personally I found this the worst part, as there were 7 of us patients there and the looks of utter despair on some of the faces when they were told (privately) that they would not be getting a transplant was truly awful.

    Rather than me trying to explain the blood type thing, you'd be better to look on the Red Cross site for info.

    There is an app, called 'QLTcalc' for your Android device which can calculate your UKELD score.

    Good luck a happy new year.

    Mike

  • Just lost my rambling post i started writing!firstly thanks for reply 1954.yes lm qe been going 16years!!!i gather double edged sword being common blood group...will look up link.i know ukeld 50 at mo ...going back soonr than expected as blood tests worse than had been.see what you mean about those who are told no... my hubby doesnt really get it i dont think...think he doesnt understand that some dont get on list some dont survive the wait ... and thats before you get to op! I dont worry for me but my youngest son is 16and has only known me ill as i was very poorly when pregnant! I know my fatigue my still b there but it would b so wonderful to have a chance to do stuff witj him!!mind u that would b very uncool with your embarassing parent!

    I wish you the very best 1954 for your wait and op...everthing crossed may see yoi in waiting room.i go on mondays pm.all the best cazer.thanks again.x

  • Meant to say as yet no ascites do have grade 2 varices..and a dodgy brain !!!!

  • Also can you explain again the nlood group tjing???

  • Hi red ime Bob, I was put on the waiting list on the 27/07/15 18 hours later I was called back and had a liver transplant at 3.45 Tuesday 28/07/15 my blood group was A+ try to get fit as possible , no tummy exercise just fitness no weights healthy food you will be fine well looked after, good luck!!!

  • Hi Bob, your story is so encouraging. I hope you are still doing well.

    As far as exercise goes, I feel really awful most days but after speaking to the consultant, on his advice I got a reclined exercise bike and do 10 kilometres each day, also about 50 gentle pushups (inclined, on the stairs) each day, I have 2 ensures a day also. Owing to this, I feel quite fit, but absolutely knackered.

    Many thanks for your story.

    Mike

  • I was nackered Mike to, but it's wort it . My operation was done by normothermic regional perfusion .

    Hope you get the same , the recovery is very quick .

    Good luck

  • Whats normothermic....ive got a lot to learn!

  • Normothermic is were they keep the doner liver as a living organfrom a machine which pumps blood through the liver keeping it warm then transplanting it straight to the patient amazing ! But like every transplant it's a long recovery !! I feel great after 5 months more alive than before .

  • Thanks for reply.

    As you can see ive done no research as ive been in limbo for 16yrs not well enough to lead a near normal life but not ill emough for transplant.

    .....things startimg to change...p hyper tension varices ukeld 50 think im borderline asessment but now have spider veins on face and stomach feels more bloated wonderimg if im developing ascites

    Best wishes for ongoing health.cazer.x

  • Wow that was quick were u in total failure? Hope u dont mind me asking.wishing you ongoing health.x

  • Hmm 'normothermic' yes, I've signed up for it but it's only on trial at the moment and I won't know if I've had it till post tx. Sounds really interesting though, where they keep the donor liver 'alive, warm and with a blood flow', rather than flushing it and packing it in ice (think that's right?). Going on what you say, I really hope that's what I get.

    Mike 😷💉

  • I was the second one in queen Elizabeth to have it ime now 6 weeks ahead of recovery ime back at work

    And on only 3 prograff 1x aspirin 1x lamoprosol 1x microphenalate 10mil lamivudine liquid in morning .

    At night 3xprograff 1x microphenalate no side affects still a it tired , I hope you get it ,, when you get the call mention it to sergeon , good luck. P.s I've had no infections touch wood .

  • What's UKELD?

  • United Kingdom Model for End Stage Liver Disease (UKELD) - this is the scoring system upon which the decision whether or not a person needs a liver transplant is based. It is a calculation based on various blood results - a score of 49 on the UKELD scale is the minimum score for listing for transplant.

    en.wikipedia.org/wiki/Unite...

    In America and some other countries they use a similar scoring system called the MELD score. Model for End Stage Liver Disease.

    en.wikipedia.org/wiki/Model...

    Hope that helps.

    Katie

  • Just wanted to say what an awesome place QE is. Their ITU staff and ward staff are just brilliant. I was there for nearly two months. I miss some of the awesome nurses there! Their specialists are just as lovely. You're in great hands :) hoping for good news for you soon.

    Good luck

  • Thank you for that Jahida. Mixed emotions certainly, in anticipation since being told that I'm on the list. When/if I do get the call, I'm sure my emotions will go into overdrive. The staff at QE do indeed seem awesome.

    Mike x

  • They are and I miss them SO much. There were a few that really went out of their way.

    You can imagine a 34 year old woman with two little ones. I was the youngest there at the time so they would call me 'little one, babs'. I remember one of the specialists thinking I looked like a teenager and she was shocked when she read my date of birth and that I was a mother of two.

    I'll be waiting anxiously for your message about the call!

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