Help!: Me again with yet another... - British Liver Trust

British Liver Trust
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Help!

Bs1524
Bs1524

Me again with yet another question. My husband was being referred by a gastro consultant to see the Heptologist. The GP advised me to call the Heptologist’s secretary to make sure the referral had been made. I did this and she confirmed my husband had been referred but that no appointment had been allocated. The secretary gave me the number for new appointments and advised me to call them, I did this and they offered my husband a cancelllation appointment for next Wednesday, great. He has received an email today that is for a different surgical consultant whose specialty is General Surgery.

I thought it had gone too smoothly I Think I need to query the appointment as to my layperson’s thinking General Surgery Consultant is not the same as a Professor Heptologist. So my first day back at work will see me on the phone for hours trying to sort this out. If the consultant he has an appoint 𝐅𝐨𝐫 is incorrect we are wasting our time and his time.

57 Replies
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Hi

I hope you get sorted tomorrow, nothing ever goes smoothly does it?!? It's like one step forward and two back!! That's the sort of thing that would happen to me!!!! Take care. Love and hugs Lynne xxxx

Gjkas
Gjkas
in reply to Oldham12

Hi Lynne, you're right about 1 step forward and 2 steps back. I was in hospital last April and diagnosed with enlarged Liver, Blocked Bile Duct,Cyst on the Pancreas and Gallstones. Then 3 months ago my Gastrointerologist told me that my Liver was near normal and my Bile Ducts seem to be clear.

Then last week I was taken into hospital by Ambulance because of really bad stomach cramps and nausea and vomiting. They did some more Scans and now I've been told that I still have the Cyst on the Pancreas, Blocked Bile Duct, Cyst on the Kidney, Enlarged Liver and also Cysts in the Liver .I also have a 16cm

Mixed Haitus Hernia along with numerous other medical problems including Fibromyalgia ,Rheumatoid Arthritis , Osteoarthritis and Osteoporosis. I have already been told that my Gallbladder has to be removed anyway. Don't know whether i am coming or going. Yep you're right.

1 step forward and 2 step back.

OOOH so peed off with it all.

Nice way to start the New Year.

I wish you well and all the best for 2020.😪 Gjkas x.

Bs1524
Bs1524
in reply to Gjkas

Oh dear I hope you get something sorted soon it is frustrating it makes me feel that I have to defend my husband against the caregivers ☹️

Gjkas
Gjkas
in reply to Bs1524

What you have just said is how my Husband is with me. He's my Carer. I haven't been out of the house for over 5 years except for Hospital care and when I have to go to see my G.P..

But they aren't much help. All our good Doctors have left the Practice and the ones there now are a waste of space. 😪

Bs1524
Bs1524
in reply to Gjkas

I am so sorry to hear this I found that I had to have a bit of a meltdown and now the GP can’t do enough

G Wizz ! You really are in the wars! I do hope you get things sorted very soon !

Love Trish x

Trish, I honestly can't put into words just how i feel. But anyway

Good Luck for the results next week. Night Night Glo xx.

Thanks Glo! I'm here if you need me!

Trish ❤

Trish ❤.Glo x.

Oldham12
Oldham12
in reply to Gjkas

Hi

If there's anything I can do pm me, I will be awake anyway whatever time it is. No wonder you are peed off!!! I had my gall bladder out in Oct '85, open surgery!! My liver is very enlarged causing the capsule around it to become stretched which causes the pain. I have many other things too including IBS, diverticulitis, gastritis, codtochondritis, sciatica, oa of the knee, degeneration of the facet joint, under active thyroid, diabetes type 2 to name but a few!!! Hope you feel better soon. Take care Lynne

Gjkas
Gjkas
in reply to Oldham12

Thanks Lynne.

Ain't Life a bitch..!!!

I told my Hubby, if i had a previous life before this one, I must have been a right b.....d. Because I'm sure paying for it in this one .

Even the Doctors have said they don't know how I'm keeping going.

You take Care as well. 😪.Gjkas.

Oldham12
Oldham12
in reply to Gjkas

Yes, life is a bitch and that's putting it mildly!! I've said that many a time about a previous life😏 everyone says how do you manage on such little sleep but you just do. It's been going on a long time now. I had to take ill health retirement in 2018, my boss was and still is fantastic. I'm lucky to have such a great support network and all of you in here too. I do hope you have some support at home. My hubby is fantastic as are our lads and girlfriends. Love and hugs Lynne xxxx

Bs1524
Bs1524
in reply to Oldham12

Thanks Lynne I was so thrilled when I eventually got through and to be offered a cancellation it never dawned on me that the appointments wouldn’t be with someone else.

Ofeckman
Ofeckman
in reply to Bs1524

too many cooks

Too many people trying to control, influence, or work on something, with the quality of the final product suffering as a result.

Maybe just holiday hiccup within admin.

You will get to the bottom of it tomorrow, heamoroids & all. 🙄

Bs1524
Bs1524
in reply to Ofeckman

😂😂😂

Filistines
Filistines
in reply to Ofeckman

digital or analog?

Ofeckman
Ofeckman
in reply to Filistines

Clockup? 🤫

Oldham12
Oldham12
in reply to Bs1524

They don't think the same way as us!!

Ofeckman
Ofeckman
in reply to Oldham12

Who said great minds think alike?’ The opposite is true --😜

Oldham12
Oldham12
in reply to Ofeckman

😃

Bs1524
Bs1524
in reply to Ofeckman

“Fools never differ” 😀

Filistines
Filistines
in reply to Oldham12

I never even knew hemmroids had brains. Just shows, you can learn a new thing here every day :-)

Nictesla
Nictesla
in reply to Gjkas

Your letter is just like my life, wait and wait and the letters I get might as well be in Greek? I have been waiting to have my Gall bladder removed after I was rushed into Hospital 50 miles away to get this done, only to be told my liver was too swollen?

I thought they would have known I have Liver Cirrhosis for gods sake.

Bs1524
Bs1524
in reply to Nictesla

They never talk to each other well that has been my experience. I had emergency gall bladder removal and they couldn’t understand why my go had never picked up on the fact I had gallstones. I guess as they weren’t causing me any grief why bother that was until all hell broke loose. Oh hum....

Gjkas
Gjkas
in reply to Nictesla

What on Earth is wrong with them all. Could they not have given you something to help you with your swollen Liver ???. Then take your Gallbladder out, especially after travelling all that way..You would have been all sorted out by now and feeling much better.

Have they given you anything to help you manage your pain.???.

I don't think some of these Doctors have got a brain, at least not one that's working. I know some of them don't read our notes ..

How long have you been waiting to have your Gallbladder out???..

Nictesla
Nictesla
in reply to Gjkas

Almost 8 months and have prescribed Codeine Phosphate for the pain, theses pills turn into Morphen when ingested and are extremely addictive?

Bs1524
Bs1524
in reply to Nictesla

Are these tablets safe for you to take. We have been told to not use any over the counter meds and they are very careful in prescribing antibiotics as the liver has to process them. Please be careful they sound like strong painkillers

Trust5
Trust5Administrator
in reply to Bs1524

Hello,

Yes, you are right, Codeine Phosphate is a strong pain killer and can become addictive. It can also cause constpation. It can only be obtained by prescription in UK and it's use should be regularly reviewed by the medical team.

regards

Gjkas
Gjkas
in reply to Nictesla

Hi there. 8 months is a long time to wait when you're in so much pain.

Both Lynne and I think alike.

Life Sucks sometimes.

Being in pain all the time makes you so peed off and depressed. 😪

Can you ring your Consultant's Secretary and tell her how much pain you are in.???.😭

I am on the Butrans Patches and I also take Pregablin and Paracetamol. I was on Codeine Phosphate but they made my stomach pain worse. I take Aspirin as well,but they are to help thin the blood. They have offered me Oral Morph but I can't tolerate it. Doesn't help my pain,just makes me nauseous and giddy. 🤮🤯

I've just been told ( again ). that my Bile Duct is blocked,enlarged Liver with multiple cysts,Cyst on the Pancreas also Cysts in the Kidney..

16cm mixed Haitus Hernia .Plus a Umbilical Hernia. I also have Fibromyalgia and Rheumatoid Arthritis, Osteoarthritis and Osteoporosis.

I thought I was going into hospital just to have my Gallbladder removed. But it's not just gonna be that simple. I was so stressed out when the Consultant was telling me,I can't remember everything that he said..My Husband made an appointment with my GP for next week. So i should find out a bit more then I hope. 🤞

The following week I have my Pre Admission Appointment...I don't know what to expect when I go in.

My head is all over the place.

I feel like screaming. 😩

Where do you live???.

I live in South Wales

Take Care. 🤔.

Bs1524
Bs1524
in reply to Gjkas

Oh poor you. You really are going through a tough time no wonder you feel like screaming, and who could blame you?

I am in Lincolnshire. Take care x

Gjkas
Gjkas
in reply to Bs1524

OOOH it's a wonder you haven't heard me screaming.

Seriously now....A few weeks ago,my Husband was helping me to have a little walk to the Kitchen. OH I hurt so much and I felt like screaming. So that's what I did. I took a deep breath and gave out one big long loud scream. OMG I frightened the daylights out of my poor old Hubby.

I've promised him that next time I need to scream like that,I'll give him a warning 1st..

You Take Care as well. 😚.

Bs1524
Bs1524
in reply to Gjkas

Oh bless you x

Gjkas
Gjkas
in reply to Bs1524

Oh Thankyou. x

Nictesla
Nictesla
in reply to Gjkas

Thanks for your reply and I live in Cornwall and my wife is Welsh from north wales.

your going through the mill aren't you poor lady. I too have a few more conditions

like Diverticulitis Disease. also have a huge Cyst on my stomach wall, I haven't eaten

for nearly a year now and live on a milkshake type substance. I hate my life sometimes but it could be worse lol. I'm a writer of Sci Fi novels now and had one published. but most days due to pain and nausea I can't rite a word.

Take care now . Martin x

Gjkas
Gjkas
in reply to Nictesla

Hi Martin, I too have Diverticulitis and I.B.S.

I also have 2 Heart Valve's that aren't working properly,but they can't find a Surgeon that would do a Valve Replacemen for me because I wouldn't survive the operation.

I have COPD, Asthma and Angina..

I'm so fed up of it all. 😭😭

I Love my Husband and our 3 Sons,

But the way i am feeling right now.

I would just like to go to bed and fall asleep in my Husbands arms.

But not wake up.. I know i sound selfish, but I am hurting so much all the time.

If we had let our 2 Doggies suffer like this, we would have been done for cruelty. But us Humans have to just suffer. If Euthanasia or Assisted Suicide was made Legal in this Country I'd be one of the 1st in line.

People that disagree with Euthanasia obviously don't know what it's like to be living every single day in Agony. Even the Doctors that I've spoken to about it agree with me. I think that this Country need to get it's act together. If I could afford it,I'd go to Switzerland. But on saying that, im not well enough to travel.

Ive already got my Advanced Notification,signed by 2 Cardiologists and a medical Practitioner. NO CPR or any kind of Resuscitation should anything happen to me. It's just not fair..

OOOH Im blowing off steam because of how much I am hurting.

Good Luck with your writing,try to keep it up if you can. 🤞

You Take Care. Glo x.

Nictesla
Nictesla
in reply to Gjkas

Hey keep your chin up as they say, I feel the same most days myself.

We had to let our dog go as it was not possible to take her for walks. I miss her greatly. I sit ay this keyboard trying to write book 2 and just sob my heart out for all of us who suffer. I was brought up tough and men don't cry lol.

I must go now, thinking off you x

Hi,

Best to check it out.

You could maybe find that the consultant surgeon is also a hepatologist. On the other hand, as you suspect ,it could be an error.

The sooner you get it sorted out the better and the sooner your husband sees the right man for the job.

Good luck with it.

Alf

I am going to I thought if you are referred to a named consultant it should be that consultant. Roll on half the day holding on the phone, sigh x

Ofeckman
Ofeckman
in reply to Bs1524

Is it for No1 urgent issue 1st?

My husband saw the gastro consultant a few weeks ago who said he had the biggest heamarroids he had seen (so proud) arranged he should see the relevant consultant urgently and also was referring him to see a Heptologist.🤔

Bs1524
Bs1524
in reply to Ofeckman

This is a referral from the Gastro consultant that was for his liver not the other consultant that was about his heamarroids I know it gets confusing.

Hi Bs1524. What Ofeckman mentioned I also wondered.

I would call the General Surgeon's office and ask what the appointment is for or reply to email asking the same. GL and HPN! Wishing better days ahead for you both.

It was an automated confirmation email so not able to reply to it unfortunately. X

ThreeSmiles
ThreeSmiles
in reply to Bs1524

I’m afraid it definitely does not work that way 😕. Of the years I have been going to QEHB I have only ever seen the named Consultant once. However at QEHB that often doesn’t matter a jot because they are nearly all brilliant liver Consultants.

But your case is definitely more significant so I do hope you resolve it today.

Good luck!

Miles

PS nor does it always work that way at our local - big - Hospital.

Bs1524
Bs1524
in reply to ThreeSmiles

All made clear now the appointment next week is about the heamarroids but not sure if it for the actual colonoscopy??? They are working o the Heptologist appointment as we speak.

ThreeSmiles
ThreeSmiles
in reply to Bs1524

Hi again Pam

Aha! Well if it was for the colonoscopy you would know because you are given strict instructions about preparation which involves drinking some lovely tasting - well not actually- sachets, to mix with water, that they will give you! Make sure you mix the sachets with water and some fruit squash - allowed - which will make it palatable 😀👍.

Good luck

Miles

Bs1524
Bs1524
in reply to ThreeSmiles

Well we were given a diy enema kit for prior to colonoscopy so I am guessing this is for the consultant surgeon to have look before carrying out the procedure. I am definitely waiting to be told he needs to use the enema nothing like an unnecessary enema to bring about hostilities x

ThreeSmiles
ThreeSmiles
in reply to Bs1524

Hmm I am baffled because I was only given the enema kit just (a week?) before the colonoscopy and didn’t see the Consultant again until the Colonoscopy itself.. But maybe Hospitals differ in their processes - it certainly wouldn’t be the first time!!

Milo

🇧🇧

Bs1524
Bs1524
in reply to ThreeSmiles

Well the Consultant that gave us the duo enema was a medical consultant so I am assuming that the surgical consultant will want to do his own examination prior to any procedure. I spoke to the referring consultant’s secretary and she was the one who told me this was regarding the heamarroids not liver.

ThreeSmiles
ThreeSmiles
in reply to Bs1524

Ahh OK I did have an examination two weeks before the full up colonoscopy (so to speak). Oh the joys - not 🙁

Bs1524
Bs1524
in reply to ThreeSmiles

I know poor hubby but over at a friend for Christmas Lunch I was chatting to another guest who had had endoscopies and colonoscopies and she preferred the colonoscopy. Such a comfort to know

Filistines
Filistines
in reply to Bs1524

especially over lunch...

It is possible to have a CT enema instead of a colonoscopy. I'm having one soon. You have a bit of fasting, drink a solution that colours the content of the colon, then the ct image shows a distinction between colon and content from which the specialist reads to see if there is a need for a camera up. It may be worth asking if it's possible for your husband. When someone is really ill a bowel cleanse is a big ask? :-)

Bs1524
Bs1524
in reply to Filistines

Great info I will mention this next Wednesday, thanks

Filistines
Filistines
in reply to Bs1524

:-)

Hi, your Hubby needs to see a hepatologist consultand.....anyone else will be a waste of time. I think the NHS has got it's wires crossed. Call the secretary, and ask for an appointment with the correct consultant.

Best of luck,

David

Bs1524
Bs1524
in reply to davianne

Hiya, I have got to the bottom 🙄 of it now. The appointment next week was never for the Heptologist it was regarding the colonoscopy the appointments team are working on the Heptologist appointment as the first one they have is for 26th March and the Heptologist wanted to see him in January 🤔

Haha, yeah there's not a lot of point being referred to a specialist and then getting an appointment with a non-specialist. Sort of defeats the object really. Should be fine to change to the right consultant, you'll probably just have to wait a bit longer to see them.

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