Dr hirschfield

[cazer]

Last year I was mpved from an am liver clinic to a pm with dr h is this of significant? Thanks cazer. X

[cazer]

That should say hirschfield.

[Debbiem40]

I don't know, I attended his clinic last time and he freaked me out! Told me all sorts of things that in 12 years of attending clinics at the QEHB I hadn't been told. If I'd have listened to him I'd think I was at death's door! Good luck!

[cazer in reply to Debbiem40]

Thanks Debbie I got told most of the scary stuff 16 years ago when I was really ill and pregnant I was told that it was a weigh up between my life and baby's. .. luckily we both survived but he had to be delivered 5 weeks early and then my ltfs improved a bit but never went back to normal. I was also told the other grotty bits by a local consultant but I like to know all the details so I won't mind if he's brutal.Lthanks cazer.x

[Tracy0512 in reply to cazer]

Hi my partner either sees James Ferguson or Dr Hursfield. Both have different ways about them Dr H being more matter of fact but have always found him very good. Brutal he isn't straight down the line he is. Xx

[crundalite]

Probably because he specialises in PBC. I changed also expert in PBC.and have had some communication with him but not actually met him. I recently saw Prof Neuberger instead who is known to most of us who follow the PBC foundation's newsletter and who also is an expert in PBC.

[Hidden in reply to crundalite]

Hiya crundalite.

My views about the PBC and this consultant being interested in this field - auto-immune.

You managed to get your reply in just as I was doing mine.

I also think we have to remember that consultants are curious about how things work, how they come about, etc and that is how certain health conditions are eventually found to be resolved/cured.

[cazer in reply to crundalite]

Thanks crudalite that makes sense if he specialises in pbc...I saw prof last time but he couldn't really say anything to help as im in that limbo land at mo...too ill to be able to manage to do hardly anything but not bad enough to go on transplant list. ...ah drives you mad!!!!

[Hidden]

Hello caxer.

Though I'm not in that locality (I am in Lancashire) I did look up the consultant I saw back in 2010. I found he was the senior in hepatology. (He was interested in PBC and was giving lectures to GPs about PBC as he said when I saw him in out-patients). It could just mean that the original consultant you saw was not as interested in the field of a certain liver disorder as consultants do vary in their specialised subjects. I found this link for you on the university site. You will find as I have just read your new doctor is interested in this field so that might be why.

I take the stance that patients who have something that is on-going like this PBC, if you want to know certain things then you ask and I sometimes think it can be a good idea to take part in the consultation by how you feel right. Personally I want to know what is going on in the 'here and now'. I have read in the past about what PBC could lead to for instance but I just do not want to think about what that fully means as it might never occur. I would rather just go along as I am and deal with things as and when.

I do think some doctors and consultants can come across quite differently. I had experience of this a couple decades ago with my former late husband, varying opinions and it was the same with my own sister last year when she was in hospital attempting to recover from brain surgery, one minute information was pretty scary and another it was all alright.

birmingham.ac.uk/staff/prof...

[cazer in reply to Hidden]

Hello peridot I do always ask questions I want to know but what I meant was if anyone knew why I was swapped to him. ..as crudalite said it is probably because its speciality however I did not see him ...don't think he was in so saw prof neuberger instead.

[Debbiem40]

No sorry I don't agree. I work for the University of Birmingham and we train doctors in communication, Dr Hirschfield needs to attend on of our training sessions.

I have seen various doctors including Prof Neuberg over the 12 years of my diagnosis, I was told my results were more or less back to normal, I should not worry about needing a transplant and I was likely to do with PBC not because of PBC. To then be told that Oh yes, you are extremely lucky not to have had a liver transplant so far; Oh no, your results are FAR from normal etc etc quite a shock! Eager and curious maybe, but rude and uncommunicative NO.

[GrittyReads in reply to Debbiem40]

Sorry, but I'm a bit confused. Can you elaborate?

Who was (or wasn't) 'rude and uncommunicative'?

Cheers,

Gritty

[cazer in reply to GrittyReads]

Hi gritty think that was Debbie that said about drhircshfield having no com skills. I'm at clinic in couple of weeks. I asked if anyone knew why I might have been moved to his clinic and general consensus was that pbc is his speciality.not sure if Debbie was responding to my comments or peridots but at least im forwarned..

Thats if I actually see him as it was prof n. Last time.x

[GrittyReads in reply to cazer]

Hi Cazer,

No, it's okay, I was attempting to reply to/ask Debbie.

I think these different levels of reply boxes get a bit confusing.

I clicked the orange 'reply' button in Debbie's post, so I would expect my question/comment to go to her, not to you?!?!? (I give up).

Looking at the comments below, I would also assume that you will have been moved to him 'cos PBC is his speciality. I've had some informal contact with him and he's been lovely, while others I've been in touch with agree.

So, I hope all goes well and you get some answers. Like you, I'd rather know the worst, as at the moment I worry that my GPs are too complacent, just because my lfts are good.

Take care xx

[Hidden in reply to GrittyReads]

I am not sure about the 'rude and uncommunicative'. Sure I didn't state that here.

Personally though I do find some doctors can be rude (eg on my 3rd hospital appointment back in later 2011 the consultant who I was seeing for the 3rd time who did know about PBC simply shouted my name and I wondered when the voice had come from! I knew patients were going down a corridor so headed that way but neither I nor my husband was impressed with this). I did think that was rude.

I also think that some doctors, not all, it can be a case that they think they know best because they are considered the ones with the knowledge in their field but I know I had this out years ago and not in an aggressive or argumentative way I have to add but more discussion-like when my former late husband took sick. I felt something was wrong, I did some reasearch of my own in library reference books, some needed a medical dictionary to team up with and I came up with a condition I was certain my late husband had. The doctor asked me how I knew such a thing so I told him. Can't say it was ever checked out as when my husband died within a year of this it was found at post-mortem he did in fact have this condition.

I know doctors have bad days and maybe got an 'off day' but me personally I do take note, I do like to know what is happening and what is thought.

[GrittyReads in reply to Hidden]

Hi Peridot,

This is Grittyreads. I've just received a private email prompt to say that you were replying to me with this particular post.

It would seem that your message beginning: "I'm not sure about 'rude and uncommunicative'. Sure I didn't state that here." * was sent to me.

I don't know if you intended to send it to me, as you don't actually say anything like 'Hi Gritty' at the start of the message (something I'm often guilty of omitting).

However, if this* message was for me, then I need to explain that the comment further above, where I say:

"Sorry, but I'm a bit confused. Who was (or wasn't) 'rude and uncommunicative' ?"

... was not intended for you, but was directed at Debbiem40, as I needed clarification about exactly which consultant was being rude. As DebbieM did answer me, I'm assuming that she received my question correctly. A quick read through all the above posts should make this clear.

As far as I'm aware, I don't think you've said anything yourself about 'rude and uncommunicative' ...

So, was my post/question sent to you? I know these drop-down reply boxes can get rather confusing.

I was under the impression that we only received a personal email - to say that someone has replied to us - if the person has clicked the 'reply button' at the bottom of our posts; and that the email should then come to one person, alone.

NB If people other than Peridot get a private email at home, to say that I've sent this as a reply to them, please let me know. Either I'm completely misunderstanding this reply system, or it is not functioning properly.

Cheers all, sorry to interrupt the debate with a quibble but I wanted to clear things up.

Gritty xx

[cazer in reply to GrittyReads]

Hi gritty cazer here...I think the way this reply system works is a bit wierd.i have just recieved your post to peridot clarifying other posts. I think it mustean that if we press reply then everyone in that particular chat will get it

Also it seems to have the title from the v. First post woth that persons name so im wondering wether thats half the problem

[GrittyReads in reply to cazer]

Hi Cazer,

Thanks for replying. I don't know. Maybe you get everything, as it was your main question/post?

We will have to see if anyone else replies, besides you, and maybe Peridot.

But I have not had an email every time that other folk on here have replied to you, or to others.

But yes, a confusing system to follow.

Take care,

Gritty xx

[Debbiem40]

Dr HIrschfield

[cazer]

Oh dear debbie sorry to hear you got such an abrupt consultation with dr h.i was other way round really I was so poorly at the beginning with pregnancy pbc and glandular fever that I knew it was touch and go for both of us! ! So I think that's why original local consultant was so straight with me as my lfts at the time were really bad and so I think he had to warn me about varices etc. Not long after that I had a biopsy which was stage 4 I know it can be different for different areas of the liver but that was 16 yrs so do wonder what is going on in side me!!!I saw prof n.last check up but did not seem slightest bit bothered aboit my problems. I think maybe they all have different opinions about the progression and I suppose we are all different and have different things happen which influence the path of pbc.this doesn't excuse rudeness so at least I am for warned . Thanks. Will fill u in after appt.

[Debbiem40]

I hope you get on ok Cazer. You've had such a hard time, I can't imagine what it must be like going through pregnancy knowing you both might not make it.

And for the record he wasn't uncommunicative, he communicated, just not very nicely!

[cazer]

Thanks debbie hes now a stroppy 16 yr (not dr h ha ha!)and despite only being 4lb6oz is doing well. .gcse at mo....ah! Almost more suffering than pbc....no im joking! I cant say it was to be recommended thats putting it mildly but hes a lovely lad.i had had 3 other children no problems so wondered what on earth was happening to me! ! just wish they would look back at history previous to comp (7yrs)as mostly they have no idea of how bad my liver function was then and feel sure it must be relevant to my progression.xx

[GrittyReads in reply to cazer]

Hi Cazer,

I'd check with the PBC Foundation, but I know someone has said, some where, that PBC consultants don't rely on lfts during (and for a bit after) pregnancy, as the pregnancy sends them haywire, regardless of PBC.

I'm sure Dr H will be able to advise on this.

G x

[cazer in reply to GrittyReads]

Oh long time ago now but also stage 4biopsy when he was 3 months old .Also was left severe fatigue itching aches pains nausea not as bad as while pregnant but not just prengnancy induced. Consultant thought prehnancy and g.fever had knocked pbc damage much further on than would have been if it had not been for the extra problems. They hoped ot was temporary cholestasis of pregnancy but no such luck!know what you mean about replies seems v. Muddly

My main frustration is that all physical signs e.g ultrasound results varices Pl hypertension enlarged spleen are worse than blood tests and consults ip there think all is stable. ...

Can't say im convinced sorry if repeatimg self.x

[crundalite]

Hi Cazer,

It's me again. I know what you mean about communication. The first consultant I saw in BHam left me scared stiff and thinking that I was,after 20 years, at death's door with varices developing and portal hypertension, even though at that time I was fit and active. That was 2 years ago (I see a gastro in Wales) and I'm still here. So are you! As I said I did not meet Dr H but had some informal communication with him prior to my appt. Colette was helpful with this as I was quite depressed for some time. He seemed reassuring although I was dissapointed not to actually meet him.Let us know how you get on!

[cazer in reply to crundalite]

Thanks crudi (hope you don't mind the abbreviation) ! I'm pretty sure I will be back from my visit in a few weeks and nothing will have change !! I just feel stuck in limbo and am so limited in what I can do. The last year ive been struggling with dealing with all the stuff that doesn't work properly gynae problems thatcan't b sorted because of p.hypertension etc so I m just have to get pon with it but my mental strength has wavered .I think I need to find it again! !!x

[cavi]

I go to QE my Consultant is Andrew Holt very nice anyone see him what do you think of him Take Care every one xx

[ness1967 in reply to cavi]

Lovely man phoned me to tell me my husband was coming home to die. There was nothing more they could do for him after a failed transplant. He rather abruptly said he had 4 weeks tops left to live. This was on the Monday, he arrived home Wednesday, and died on the Saturday. Still heartbroken now. Fabulous communication skills. ( not) !!

[cavi in reply to ness1967]

So sorry to hear such sad news was that Dr Holt or Dr Hirschfield that called you at home Take Care x

[cazer in reply to ness1967]

thats so harsh. ..I know they can't change the outcome but how they deal with these things can make such a huge difference to the omes left to deal with the grief.so sorry for your loss.did he have pbc?cazer.x

[ness1967 in reply to cazer]

He had the transplant in march 2014 and it was the best possible match. He was discharged from hospital a week later and had to travel home 7 hours on the motorway. He then had to return to the hospital 2 days later for his first checkup . Another 14 hour trip. Was sent home with just 2 dressings for his wound and no after care from district nurses was in place. He was changing his own dressings that where weeping all the time. He then developed Septicemia and was airlifted back to QE but was far to poorly to have another transplant. So was sent home to die. Very bad after care. Transplant done now get home and get on with it.

[cazer in reply to ness1967]

oh ness what a nightmare..you always sort of assume after care will be good after such a big op...i have to say you must be severely traumatised not only from the loss of a loved one but the whole thing. It seems ludicrous that he was sent on such a long journey after such a short space of time only to go back again! !! Were they really that short of beds? I don't want to make matters worse but has anyone ever spoken to you about it all. I think you need information on at what point it all went wrong! Mind you i suppose its just prolonging the agony. Perhaps you could write dr h a letter letting him know that his cras dealings with you and your husband have made moving on nigh on impossible. You sound quite young do you have children? Love cazer.x

[Zelda5 in reply to ness1967]

Hi ness1967,

I'm so sorry for your loss!

[crundalite]

Once the 'oomph' has gone it is hard to get it back again. Even harder when you feel so debilitated. Plan something nice for yourself (even better get someone else to do it) . It might help to kick start things. Answers would help I agree. I hope you get some. Woill be thinking of you.

[cazer in reply to crundalite]

Thanks crudi I do sing in a couple a of choirs despite the fatigue and they are really sweet to me and I sit down to sing .it is my sanity and the only thing that takes my mind offf all the aches itches etc etc. It takes me days to recover from a concert but worth it.we want to book a holiday and last year was advised not to fly but can now fly but not sure if we can get insurance? That's another dilemma! !!anyway will try and get self motivated. Thanks again for your care. X

[crundalite]

Hi Cazer

Holiday Insurance. we are off to France for a few weeks camping soon and I have just insured withgoodtogoinsurance.com. This was primarily for health rather than possessions,cancellation etc and I am 69years old. Stage 4 (Cirrhossis) and varices are cover Hope this helps.ed although the last one pumped the price up despite having been banded and never suffered bleeding. About £400 for 6-7 weeks.

[cazer in reply to crundalite]

Ah thanks also thonk stage 4 and small varices (2xlevel1) ours would just be 10days so might be cheaper?

Will try them. X