Appointment with liver specialist

[cowren]

I was really good wrote a list of questions took my husband but still managed to come home without all the answers!

Question : what stage am I at ?

Reply : well there are no signs of Cirrhosis the surgeon who removed your gallbladder didn't mention it in post op report.

(Was he looking for it I think ) your bloods have improved since last time since taking urso but I would like to increase your dosage.

Question: What happens now ?

Reply: I will make a follow up appointment for 6- 8 months. I will also request an appointment for you to have a bone density scan. (Closes my file)

Frustration has now set in I then ask what is the long term prognosis ?

Reply: I expect you to have a normal life expectancy if you levels stay the same. ( moves in his chair appt is over )

I then ask what can I do about fatigue ? Should I be taking any supplements.

Well with you gallbladder and hernia you can't be sleeping it shud improve.

I then say but I just feel like someone turns my power off by mid afternoon! no response just hand in the form to nurse on way out and she will arrange bone scan.

well I've got another six months to work myself up to getting the response I need

FRUSTRATION is not the word !!!!

[Cherry17]

Wow I was planning on sharing a similar story today esp after my hospital appointment this morning.....I too spent time doing some research & list of questions I wanted to ask plus took my partner but went one step further and asked to record the conversation(I have a mini walkman that has a voice recorder, but most mobile phones today have a voice recording setting) its the first time I have done this BUT HIGHLY RECOMENDED as I have usually forgotten everything as soon as I have left the room as now I can listen back and take note.

Since being diagnosed March'11 I 1st saw the Gastro registrar the 6months later the Gastro Consultant who arranged for me to have more bloods, ultrasound, DEXA scan & camera down throat and return 6months later(today) but the only test I had recieved an a app for was my ultra sound. So today I saw the registrar with only the results from my bloods n scan. My liver had a coarse texture which he said was cirrosis?(I was confused at this point as I thought it was only in the later stages of PBC that cirrosis occurs?)

One of my main concerns was problems with my memory/concentration which he said was probably down to nutrition as he was a geriactric specialist working with people with dementia and as I was too young(38) to be having problems???? Which made sense because I felt I knew more about PBC then he did? Asked about seeing a neurologist and told to see my own GP.

I too asked about what stage I was and whether I needed a biopsy......at this stage he excused himself as he obviously needed to ask someone with regards to my question, he returned to say that because my LFT's were in a normal range it was not important for me to get a biopsy which threw me even further into confusion as to the fact that how could I have cirrosis but my LFT's were fine?

Conclussion>>> Get the tests done that i should of had before todays appointment and see you in 6months

Result>>>>> I'M MORE CONFUSED AND FRUSTRATED AND HAVE ANOTHER 6MONTHS OF UNCERTAINTY

[cowren in reply to Cherry17]

Hi Cherry it just makes you so mad doesn't it !! Because I had gallbladder issues when I was diagnosed I have had ultra sound and ct scan and endoscopy all done. I think that's all they can do . He did advise that nothing had been untoward ????

I my memory is not good and fatigue can knock me for six ! I am 52 and work full time for an insurance company and I don't want to give this up because of financial reasons mainly. And I know it would be a hard slog to get any benfits and I'm expected to retire at 67 its just seems such a bleak outlook and when you come back with more question than answer you feel such a fool.

Anytime you want a rant I'll be here sending you hugs Karen x

[Jtxx in reply to Cherry17]

On my original scan the report said "The liver appears abnormnal with a coarse nodular appearance" Interesting that you were told that your coarse texture was cirrhosis! I have since had a liver biiopsy and I do not have cirrhosis! x

[Cherry17]

Hi Karen, what gets me is there seems to be no clear facts and I feel like I am being dragged from pillar to post and still no wiser (GRRRRRRRR its hair pulling frustration) I'm trying to learn as much as possible but that seems to come to a dead end, no-one seems to have any concrete answers? I bravely did some deeper research(I use the term bravely as I don't think my brain is capable of remembering a thing lol) but PBC seems to draw towards it being genetic or/and enviromental as to why we have it.....but read some intresting research about a mother and her neighbour caring for their PBC daughter and they both went on to have PBC themselves?? Mind boggling lol

R u in the UK and being treated on the NHS? Did specialist offer u a biopsy?

Same goes to you Karen....Rant away Its such a relief to share xx

[cowren in reply to Cherry17]

Hi Cherry I'm in the UK he didn't offer it suggest biopsy . He just said as I had been to ill with gallbladder he didn't want to pile on any more things. I also have degeneration in my neck and fusion of the lower spine so I have been added to a pain clinic which gave me some pain block injections as my own gp didn't want me taking the meds I was on $or that (naproxen) as its so bad for liver.

So I do think he is doing things in a certain order and my gp said I was lycky to get ct scan and endoscopy so quickly.

Like you say thou the more you dig the more confusing it gets !!

I did get my 2 sisters to check with Dr and they where both clear.

I also asked my daughter to get checked out but her Dr didn't have a clue ! She's pregnant now and due in May so she has been checked by midwife as its often discoverd in pregancy.

(This was my biggest fear as research proves that siblings can have it an females are at greater risk )

I've been off work for 6 wks and start back on Monday on phased return ! I can't wait but am also dreading it.

Once again best wishes to you and your family.

Karen Xx

[Cherry17 in reply to cowren]

Sherbert I am sorry to hear about all yr other symptoms & the pain u r experiencing Is yr degeneration a result of PBC or something different?

Ummm GP saying yr lucky to get a CT scan & endoscopy.....whats lucky about having PBC and needing those tests?

There seems to be a strong link/connection btw pregnancy & PBC, my PBC diagnosis came after my miscariage Oct 2010.

I can imagine yr fear as to yr daughers future health re: PBC......I pray all comes back negative.

As for u starting work nxt monday all I can recommend is to test the waters(so to say) try not set too higher targets or try to be as you were before as it may add to all your frustrations if u have not managed to fulfill what is expected of you .....take things easy and listen to yr body....

C xx

[Hidden]

Good Day to all.

Have just read the questions and replies on here and wanted to add further.

I too managed such confusion on visiting the hospital later 2010 for the first hepatologist appt - I live in the UK by the way - (my GP originally sent me for a scan after numerous abnormal lft's and various blood tests to rule this and that out first).

I DID ask questions and did find that the doctor made certain replies which I found a bit offensive plus the questions he asked me (especially one about my monthly cycle, I told him twice I had a normal cycle). I recall him asking me if I was in work (I had not long finished, not down to the fact I had started with the itch (due to the actual job) and he said I 'was retired' and when I came out I felt like I had aged about 2 decades (and I was only 46)!

That day I had the routine blood pressure, urine sample and bloods, one being the AMA and then left with "I'll see you in the near future after the results come through". 2 consecutive appts last yr proved a bit of a waste of time to me so I got him to agree to discharge me to the GP for the present (may have to return in future if things slide).

As I see it, like a lot of life (as I say, "We are only important to the special and loved ones around us"), each of us are just another case number and I DO find that majority of us are not treated like individuals. That is MY view. It's important to us but to a specialist something they think is pretty normal to them (ie a blood reading) with seeing it all the time and not an overly-significant worry can be to the patient.

I saw my GP yest (repeat bloods due this wk) and got a print of the letter the hospital doctor sent him late last yr as knew it would fill me in more than the one I got sent from the hospital. My GP who I'd not seen before in tis practice, said he couldn't see why I wanted a full print-out of the blood results and even asked me if I was still on URSO????!!!!

Prior to the itch in 2010 I rarely frequented my GPs. I KNOW not alldoctors are bad, I put it down to how they are ruled from above, criteria they have to follow.

[Jtxx]

I had my appt with liver specialist yesterday and when I asked him for the exact figures of my blood results, I like to keep a note of them, he told me I sounded like I was becoming obsessive about the numbers! I told him, quite bluntly, that I was not obsessive but interested to see the increases/deceases and in my logical brain I needed to understand the process. I need to understand what is going on and I find it so frustrating when they treat you as a condition and not as a person with individual needs!!

Having no black and white answers is REALLY frustrating to! One point though is that I thought cirrhosis developed in the latter stages of PBC?

I was diagnosed at the same time (46yrs) as I was told that Inwas in the early stages of the menopause - hormones again!

My mother had PBC (diagnosed 42yrs - had liver transplant aged 45yrs - died 57yrs), although they say its generic and not hereditary. My mother had advanced stage cirrhosis when diagnosed. Her older sister has PBC. My sister's LFT's are ok. I, however, have PBC/AIH overlap syndrome. My consultant reiterated yesterday that I should not worry about the PBC as the AIH was the most dangerous one (he said the lat time that if the AIH was left untreated I could be dead in 3/4 yrs - I have just turned 47). What a wake up call. AIH definately driving my prognosis. I feel frustrated about him telling me not to worry about the PBC because of my mother having PBC and what she went through. I have bile ducts and liver cells being damaged!

I think the symptoms are fairly similar between the both so hard to tell what is causing what but I agree with you girls that they don't know enough about PBC which leads to frustrations all round.

Sorry I've rambled on but good to get it off my chest. Take care. As Cheryl17 said, we all must listen to our bodies to help is cope day to say. Xx

[Kaywal]

Hi. I just wanted to let you know that I didn't have any signs of chirrosis after MRI scan and ERCP but minor scarring was confirmed through liver biopsy. Perhaps it has to be more advanced for them to see it with naked eye?

[zipitydoo]

i have just been reading through these. Now this is just my opinion but in all honesty I think they dont answer questions because they just dont know the answers.

The liver specialist I saw quite openly told me they did not know much about PBC, its not common so they dont see a lot of patients with it. I think we learn more through the PBC foundation and by talking to others via the internet or group meetings.

So much is still being researched and with us talking to each other we find complaints (like memory loss) that we all have in common but without talking to each other would we have connected it to the PBC?

I do think though that (like mine did) they should listen and make notes to our concerns and look into them as hopefully that way they should learn a little more and we might get some answers.

[Hidden]

normal replies -- these drs do NOT know all there is to know about us or pbc, its frustrating -- your option is to get a new dr, maybe you'd get a new reply - good luck!