PBC Waiting time...

[Bbsmom]

just wondering on average how long you waited. I have PBC and have been on the list 10 months with one emergency dash to Kings earlier this month. Luckily I am still able to get about albeit slower and tire more easily, but the physical side of things is declining and emotionally I am on a roller coaster of emotions like everyone here. Was warned at outset that due to blood type O I could wait for anything up to a year but as that date looms I’m starting to get disheartened. I’m having a pity party today n just needed to gauge how long other PBC sufferers waited.

Don’t post often but do cheer you all on from the sidelines.

Tia

[Hidden]

Hi Bbsmom,

Dont apologise, everybody needs a wee cyber hug now and again. 🤗

I cant help with your question but thinking of you.

Take care Angela xx

[Bbsmom in reply to Hidden]

Many thanks Angela, just feeling iffy n to top things kings phoned me yesterday and for the 2nd time my gp has failed to send over my monthly blood results to place me on the list. This happened in June and they hadn’t sent them for 3 months and then again yesterday and they haven’t sent the last 3 months, don’t need that at this stage as I know my place on the list depends on those bloods being received regularly.

Just wishing the end was in sight lol

Xxx

[ThreeSmiles in reply to Bbsmom]

Hi Tia

Why aren’t your blood tests being done at the TP Hospital that put you on the waiting list. I didn’t know that was possible but I certainly didn’t know everything by a long shot! Also why are your tests results needed to keep you on the list? In case you stage a recovery?

Good luck whatever the answers!

PS Ahh I know the answer now - you’re in Belfast!sorry I should have remembered that ☹️. Further to what SL said you should be able yo get access to all your medical records on line. We can in England, hope you can too.

Miles

[AyrshireK in reply to ThreeSmiles]

It's usual for bloods to be taken regularly whilst listed and waiting as the results indicate the level of urgency for transplant and place on list. I too was a bit unsure about the GP taking bloods and sending results in - seems an unusual situation. Whilst listed hubby attended t/p clinic every 5 weeks and it was there that he had bloods done and list position dealt with by co-ordinators.

Katie

[ThreeSmiles in reply to AyrshireK]

Mine were done at TP Clinic as well but I was lucky only to have to go once due to short waiting period for TP.

[Bbsmom in reply to AyrshireK]

Similar to the way it woks her. Xx

[Bbsmom in reply to ThreeSmiles]

Hi guys and yes, as said above, I’m from Belfast and Kings sent letter to GP asking them to take blood tests and fax over every month as too expensive to fly me to Kings. Also my local hosp Royal Victoria Only see me every 8 weeks. I only wish we were as lucky to be able to view on line but sadly our non functioning executive here ..and im NOT being political here ......are being dipsticks and everything is suffering as a result and we are practically living in a backwater as regards to health, education and infrastructure as you can imagine. The NHS is a wonderful thing and I’m so grateful for the GP I see and the girls on reception being as good as they are because I’ve come to rely on them and by passing normal GP. lol ....as AryshireK saysit would be so bad but even the transplant coordinator from K8gs when she rang them in June to say she hadn’t received the first 3 months told her . It’s not just something simple this is her very LIFE on the line here..thankfully not at this time as I’m stable...ish but be all the same it it were.

[Bbsmom in reply to ThreeSmiles]

Hi Miles, in Belfast we get them done at GP as you state and because I’m not an URGENT case, my worse symptom is the blasted itch that’s why I’m on the list in the first place as they knew at the time of listing my condition would continue to deteriorate and I would have more symptoms, but if they got the itch under control, given my blood results I might be delisted again, but as it stands as time has gone on my results are good one month then 2 months bad than back to really good, and my lifestyle or medication nonverbal changes , just happy the liver performs, I’m a complete source of puzzlement to t(em lol. Non alcoholic PBC haven’t had a drink in 25 years or more but still up n down like a yo-yo lol

[AyrshireK]

Hopefully your call won't be too far away, having had one call it shows you are up there and your call will come.

By this stage it doesn't matter what your underlying condition was that caused the cirrhosis (it's irrelevant) it's the symptoms you now have, your UKELD score and the degree of severity that is deciding your place on the list and it's all to do with what size and type of liver you've been deemed needy of.

Like I say you've had one call this month so it shows you are 'up there' so keep the strength and faith that your phone will go - hopefully sometime very soon.

There are others who wait years without a whiff of a call so you are definitely getting close.

Best wishes & cyber hugs, Katie xx

[Bbsmom in reply to AyrshireK]

Thank you for your lovely reply Katie, that’s the name I had picked out for my baby if it had been a girl btw but don’t think my strapping 16 year 6ft rugby playing son would have appreciated it lol....it’s good to know that people think I’m close, I though that maybe the call was just a fluke as I only have had one but as you says now I now I’m up there and it could literally be my time soon. The support on here is amazing and though I lurk more than post I love the fact everyone is so supportive

[Hidden]

Hello Tia, I've just come to you pity party to wish you well, and hope that you are soon called for the liver you need.

Phyllis x

[Bbsmom in reply to Hidden]

You are too kind my love, taking heart from the replies and as Katie states hopefully I’m up there now n another call will come soon. Xxx much love

[Dannythedog]

Hi Tia

Hopefully you will get a call soon, I’m also cheering everyone on from the sidelines as don’t post to often. I keep my husband updated with the posts and I think it helps him a lot to know he’s not alone on this journey.

Best wishes

Geraldine

[Bbsmom in reply to Dannythedog]

He certainly is not Geraldine, we are all in this together, a merry band 9f soldiers fighting a common enemy. He time too will come. Thanks for your reply and good wishes xxx love n hugs

[Hidden]

Hi Tia

Sorry to read about your long TP wait and especially your bloods not being sent over to Kings which is utterly appalling!

I'm here if you want someone to scream at 😷or just for a general chat as its horrid feeling down ! I'm a great listener

and can be as mad a hatter sometimes which you may have noticed but I do have a kind serious heart which many will confirm !

I'm being monitored for non alcoholic PBC and shall be seeing my consultant on the 8th of October ! I'm not sure what the outcome is going to be as blood went back to normally in July after 15 months of monitoring then August bloods flared up again ..

Take care and all the best

Love Trish x

[Bbsmom in reply to Hidden]

Thanks Trisha, I too am mad as a box of frogs lol, and all the offers of venting ears and support has really lifted me, thanks again for your reply. I was fit to be tied on Friday with the blood results not being sent, this is the second time this has happened, I see a different gp in the surgery about my illness but my registered GP hates me and I think couldn’t care less if I EVER got the tp as she is not the best int(e world, hence why I go to the other one in the surgery. I bawled her out one time after she announced over a packed waiting room , “oh you’ve claimed PIP and I got a form to fill in but sent it back because I don’t know what happening with you saying I was unaware of any issues you were having” I went ballistic, not only could she have looked up the flipping computer to see. What was going on, but now half of blooming Belfast know I’m sick n I’ve claimed PIP lol ..bitch

[ThreeSmiles in reply to Bbsmom]

Hi Tia

Please see my reply to SL below about your legal right to see your patient records. Surely these legal rights also apply to Northern Ireland?

Hope you can get for them! 🤞🤞

Miles

[Bbsmom in reply to ThreeSmiles]

Ohhhhhh, thanks Miles, gonna look further into that, if I could get access to the results I don’t mind sending t(em over myself, that way I KNOW they will be done and I won’t get regular calls from Kings chasing them up. Thankfully coordinators over in Kings know me and know I would NEVER not get the bloods done so I’m very lucky for that. Racquel did say the last time I was nearly being removed from the waiting list for “non compliance” ie failure to get the bloods taken, hence why she rang me first to check as it was she who had done my assessment and she knew the only way I would forget to get them done was if the encephalopathy has gotten worse, so thank god, she rang to double check with me before she did anything else, I didn’t even KNOW you could be removed for any other reason than an improvement in your condition. I’m thankful grateful and so lucky they were on the ball and gave me the benefit of the doubt. Thanks again for that info.

[ThreeSmiles in reply to Bbsmom]

Np Tia

I thought another reason they could remove you was if the bloods showed you had been drinking alcohol. So maybe if they don’t get bloods they may be thinking you had been drinking . Of course I know from you have said you wouldn’t but I suppose someone could, if they were being very pedantic, compare it to not giving a blood sample after being caught in a car and suspected of drink driving. I am just making an assumption that that is what they may say!

When I was in the Ward after my TP a patient awaiting a TP himself (he was seriously ill but could just get up and walk about) and someone had reported him for going off the ward! So they came unannounced and did a “random” blood test! Of course he was so ill he was hardly in a position to go and get alcohol but it just shows how much store they put in not drinking!!

Miles

[Bbsmom in reply to ThreeSmiles]

Yes that’s a really good point, in my case it auto immune and I’m not a drinker anyway and don’t touch it now but as you say SOMEONE could and best to check. I’m so scared now of being removed from list I’m away 5 days before due date to get the bloods done in case there is any delay..n then that muppet isnt even sending them over, that’s what galls me. Everyone else is doing what needs to be done and because of her negligence the whole thing could be jeopardised...I know for a fact she lunches with the practice manager as I have seen them at times I have been down and I nip into the coffee shop in the surgery so think it’s a non starter lodging a complaint. And I don’t want to start a fuss because everyone else in the surgery is amazing and I don’t want to land anyone else in bother ,just a shame as she is the ONLY GP in the practice of 8 doctors who has vacancies on her list...all other gps list are full, I wonder why no one else wants to be on her list lol...she is actually the joint owner of the practice yet not a well respected doctor. But hopefully I can continue to bypass her and see the other doctors until this is over because they are amazing. Think she just has a personal dislike of me, I know I do of HER, but I don’t make trouble for her so would expect her to be professional despite her personal probable dislike of me. ...ah well, onwards and upwards. Just checked and the view your records service doesn’t seem to apply to NI .

[ThreeSmiles in reply to Bbsmom]

Hey up

She doesn’t sound a very nice person at all ☹️👎🏻. Lunch with the practise manager ....hmm you are - how to say it politely - umm stuffed?Hope you can continue to avoid her from now on.

There wasn’t any proviso on that statement re accessing your own records so it is odd. But it seems that is not the only thing that differs between England and NI ☹️.

Good luck.

Miles

[Bbsmom in reply to ThreeSmiles]

I tell ye, we live in a backwater til the stupid politicians stop playing silly beggars here n get back to work, we hav3 be3n without the “assembly” for 1000 on 13 Oct n the clampets are STILL getting paid their full wages..it’s a joke.

[ThreeSmiles in reply to Bbsmom]

Aha - had to google it so I didn’t remain so uneducated!

“This means that the UK Parliament has transferred to the Assembly the power to legislate on local issues.”

So that’s probably why you can’t access your medical records - but I don’t really know!

And

“The Assembly is currently in a period of suspension, after it collapsed in January 2017 due to policy disagreements within the leadership and the resignation of Martin McGuinness following the RHI scandal.”

So now I get your comment about 1000 days 👎🏻.

Oh dear ☹️

Sort of off topic but it relates to accessing patient records!! (As you know well - but others may say what on earth is he on about 😁)

Miles

[Hidden]

Hi again

Sorry to read your having a tough time with your registered GP! Me personally would make an appointment to see the Practice Consulting GP Partner who you are well within you right to make an appointment to see! You are also within your right to request a copy of all blood tests usually with 7 to 14 days of them being taken! I normally get mine within a week! I usually put the request via the receptionist and they normally call me at home the next day for collection!

I would start logging dates of everything that has happened to date incase you feel like presenting a letter of complaint!

My philosophy is to keep calm ! However announcing your claiming PIP was disgusting situation indeed which should have been kept private and confidential between you and your medical centre/GP.

Anyway I do hope things eventually get sorted so your TP is on programme !

Take care in the meantime

Trish

[Bbsmom in reply to Hidden]

Hence why I was livid with her for doing so, it was in the middle of an “ open flu clinic where everybody just sits in the reception area and the first available medical person takes the next in line, I knew half the patients sitting there and didn’t particularly like them knowing my business

[ThreeSmiles in reply to Bbsmom]

That was appalling of her Tia. 👎🏻👎🏻

[ThreeSmiles in reply to Hidden]

Trish - haven’t you asked for online access to your patient records yet? I am sure we discussed this before 😁.

On the NHS website:-

nhs.uk/using-the-nhs/about-...

An extract from this says:-

“There are a number of different types of health record, accessing them is free, and healthcare professionals have a legal requirement to allow you to see them.”

I have found this an absolute boon! Only wish I had asked for it earlier on!

Milo

[Hidden in reply to ThreeSmiles]

Cheers Milo

Will look into this maybe tomorrow as just landed at Gatwick !

Much appreciated for the second time😁👍

Trishi

[ThreeSmiles in reply to Hidden]

And don’t go to that blooming gym till all your pains get at least a bit better! You know it makes sense - as some saying or other goes!

[Bookwormfanati]

Jumping on the "Really hope your call comes soon" band wagon 😁 Sorry to read how badly you have been treated but hopefully your not far away from it all being over!! ☺️ xx