Surgery in PBC Sufferers

[hotdog]

I need a knee replacement but have been told that having PBC increases the risks in surgery. Has anyone else been told this? If so how does it?

[Oidra]

I had an operation on my back, the doctors etc were aware I had PBC but I don`t remember having any procedure changed because of it, and the operation was perfect.

[Rosehip19]

I had a hip replacement three years ago. Nothing was said about increased risks with PBC at the time, but I did find it hard afterwards to regain any sort of appetite. I also had to learn to sleep at night all over again! I put these down to the anaesthetic, but they may also stem from having a dicky liver. I also wonder if the fact that I am still struggling with painful hips and excessive tiredness when going for a walk can also be laid at the door of PBC. Maybe I am just old! Good luck with the op, hotdog.

[PBCRobert Partner]

Hi, Hotdog.

First off, a small percentage of people who have PBC go on to liver transplant. This is a routine, yet still serious operation. By necessity, those people (with ebd stage disease) are going through long surgery.

What I would say is that decisions on any aspect of medical care must look at the person as holistically as possible. Each and every decision, if following best practice, looks at everything in balance and then looks at the best way forward.

So, how needed is the op? How bad is the PBC? What other factors need to be considered?

Some people later in liver disease will have clotting issues. If known about, it can be considered, monitored and addressed. All said, many people with PBC will go on to have operations which are totally unrelated to their PBC: it comes down to what is best for the patient at that time.

A conversation with your liver consultant may be of benefit at this juncture.

[hotdog in reply to PBCRobert]

Thank you Robert I have thought of that and am seeing the liver consultant next March so will ask them about it. The consultant I saw yesterday regarding the knee replacement did not know what PBC was and I think as soon as one mentions the word cirrhosis they see that as a complication in surgery. He said he would see me in a years time. So for now I will put up with the restricted movement and pain it causes. Keep taking the tablets as they say!!

[hotdog in reply to hotdog]

Dear Robert

I thank you for your reply. After waiting 3 years I saw another highly professional surgeon Professor Chetty and I underwent TKR last week and it was highly successful. He was amazing and fully understood PBC and I was treat accordingly allowing for this with spinal anaesthetic to avoid as much upset to the liver as possible. I only wish I had gone to him in the first place. So wish others who need to have TKR just to make sure they have an understanding Surgeon who knows about PBC. So many professionals still do not have the knowledge. I thank you also for the support you have given to us all in th last years in dealing with this condition and our many queries. With kindest regards to you and your team. God bless you all xx

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[teddybear7]

I had a knee replacement last year and was diagnosed with PBC just after. They didn't know and I was fine.

[Tracy181]

I ad a hysterectomy in June and the doctors and my hepatologist were not concerned. It went off without a hitch and I was back to my old self in no time! Everyone is different....but that was my experience.

[Hidden]

Hello hotdog.

I don't think the risks increase in surgery for anyone with PBC as in majority of patients really. I do think though that any medications following surgery could have a temporary impact on the LFTs due tot he liver having to deal with any additional meds.

A general anaesthesia is usually dealt with by the liver in breaking it down so that could possibly have some slight impact but any concerns here it would probably be best discussed with your liver doctor.

[hotdog in reply to Hidden]

Hi Peridot

I am seeing the Liver Specialist in March and will put questions to him about it as you suggested and as Robert did. Other replies could see no reason due to PBC as to why this would make a difference to the actual operation other than what you mentioned. Also the assessment consultant had put me forward as needing this op. I now just wonder if they are trying to reduce ops. So for now will put up with the pain and discomfort and keep taking the tablets. all good fun a.

[Hidden in reply to hotdog]

Operations it does seem (not experience of recent) are only being done if they are found to be in dire need of for a patient.

Usually the benefits as the doc's terminology is said to be is considered as if these 'benefits outweigh the risk' then it is deemed good to go.

I think you might be in the UK and if so then a pre-assessment is usually done with blood to check the clotting as stated by Karaliz is done along with blood pressure and up-to-date weight (this tends to be done if any meds are required like we have urso down to weight).

Hope it works out for you, you get your questions answered and can start to move on once again.

[Karaliz]

Hi hotdog,

The issue, as Robert stated, is largely to do with deficiencies in blood clotting which are manifested towards the final stages of liver disease. I have had PBC for 11 years and have had 2 operations, one recently. My consultant who is part of the liver transplant team here in Melbourne Australia says that as long as clotting profiles are within normal range surgery should proceed quite normally. I have cirrhosis but clotting profile and bilirubin still normal so surgery went well. I understand that advanced symptoms such as ascites can complicate surgery but generally do not prevent it.

On another note as Robert said so rightly people undergoing liver transplant face a huge ordeal with significantly deranged bloods right across the board and they seem to fare very well with expert medical care.

Good luck and I hope you are able to speak to a liver specialist prior to March.

Karaliz

[Hidden in reply to Karaliz]

Often the blood clotting is measured from time-to-time here in the UK it seems, not every blood repeats from my own experience.

I had a minor problem with nose bleeding (due to a pinprick spot in my nose) and I had the prothombin time as it is known done before I went to the ENT clinic.

I don't know how the subject strayed to liver transplants on this posting though... but from other's experiences of undergoing one in the event PBC deteriorates so badly, I have read that itching for instance is non-existent just following transplant (if you were an itcher) and other signs are quite normal, all down to a new liver.

[Karaliz in reply to Hidden]

Hi Peridot ,you may have missed the point here. The posting thread did not "stray" to liver transplants.... The question was asked , Does PBC increase the risks of surgery ? Robert and I were using liver transplant as the ultimate example of major surgery where the patient undergoing it would have significantly deranged bloods including most particularly abnormal clotting profile. In this instance the patient MUST have surgery and with careful monitoring come through surgery well.

For most people with stable bloods and no complicating factors such as ascites, most surgery should proceed normally without any problems.

As an example, my most recent bout of surgery in August went off without a hitch in spite of, as I mentioned, my having cirrhosis and low Albumin.

Cheers for now,

Karaliz

[Hidden in reply to Karaliz]

Hello again Karaliz.

Well I do actually beg to differ here with regards to my stating that the post seems to have got onto the subject of liver transplants. I do feel that this would be a totally different example as if one does get to a certain stage in PBC that would require a liver transplant to survive then it is by far different from someone having other certain sugeries. I believe the original posting was regarding knee surgery.

If someone does reach a transplant stage then I am certain that there would be a lot more involvement of pre-tests, etc before one could be undertaken, tests that would probably be unlikely in the event of liver transplant.

I do think that majority of patients with PBC who do encounter minor surgery and perhaps even major surgery, eg hysterectomy their LFTs would probably more often than not have significantly deranged bloods or abnormal blood clotting.

It is normal here in the UK for a patient to be monitored for a certain number of hours and time period following coming out of surgery.

I am certain as you have mentioned that you do have cirrhosis and low albumin count that in your case you would more than likely have a more extensive monitoring following any procedure.

I do think that a mention of surgery and using liver transplant does to me anyway at present seem to be a bit drastic way of an example. Sorry but that is how I feel. I might feel I am doing ok and my bloods although still abnormal, currently aren't so bad and I've only got that plus the itch and for me though I did read about PBC perhaps one day maybe leading to liver transplant, I switched off to that long ago as for a lot of us I am sure it will never get to that so why think about this now.

[Karaliz in reply to Hidden]

We seem to be at cross purposes here !! If we rewind, the question posed was does PBC increase the risk in surgery ie any surgery ? What doctors are most concerned with is the issue of bleeding during surgery, NOT what happens after an operation. Obviously if bleeding is not controlled during surgery then the consequences are dire for the patient. Therefore for most people with PBC with a normal clotting profile this is not an issue and surgery can proceed much like it would for anyone in the general population. It must be remembered that abnormal clotting tends to occur in late stage liver disease.

Therefore it makes sense to use the example of transplant surgery when someone asks the original question......ie If someone who is so sick with deranged bloods/abnormal clotting can undergo the most serious type of surgery, then you and the lady needing the knee replacement and even me with cirrhosis can all pretty safely approach surgery knowing our risk is minimal AS LONG as our blood is still clotting as it should.

I work as a nurse in a major public hospital on a stroke/neuro ward. Many of our stroke patients are on anti-coagulant therapy to prevent further strokes. This becomes a major headache if the patient requires surgery for the reasons discussed above in that their blood is thinned. This then requires careful planning by the surgical team.

The surgeon who performed my recent operation is actually part of the transplant team and he also mentioned that complications of late stage liver disease such as ascites and varices can complicate surgery but surgeons can pretty well always find a way around any difficulties if surgery is required.

You often mention in your posts that you switch off when thinking about transplants and I hope you never have to face that possibility.

For some of us on this site, however, a transplant is a very real scenario and it is therefore not an option not to think about it.

Enjoying every day until that day comes seems to be a good strategy as I'm sure you'd agree!

[Hidden in reply to Karaliz]

Interestingly on just re-reading the original posting, hotdog states, 'I need a knee replacement but have been told that having PBC increases the risks in surgery'. Going via the original question, I did originally reply to the mention of 'knee replacement' and the menton of liver transplant was brought into it. Sorry if I caused any confusion but it seems that other contributors to this page who have had such surgery have also read same to offer their input.

My sister suffered a Glasgow Scale 5 brain haemorrhage almost a year ago and was in hospital until 6 wks ago. She endured 3 lots of brain surgery in the first 6 months and she was at some stage on blood thinners by injection in her stomach whilst hospitalised and at the time really bed-bound. I understand that anyone with PBC for eg and having these injections - I have thought of this along the way - then they would ultimately perhaps be at a greater risk in having PBC if it is so that their blood results are pretty poor.

I resolved myself a long time ago now and I have been PBC diagnosed since Dec 2010 that I don't want life to revolve around PBC so therefore I do aas much as I can in life and when I can.

Yes liver transplants are definately something that can happen and to anyone who has PBC and I dont' know what is in store for me in the future. But I look on it that it might be out there eventually but meanwhile it isn't of which I am fortunate for so do count myself lucky there But, there has to be a but hasn't there (!) I then think on the other hand that I've not got it that good with PBC as I spend every day enduring the itch and I've had it not far off 5yrs now and I can't now remember what life was like when I never itched. The itch has an effect on my life that it regularly torments me in the hours when I should be sleeping, it can affect my husband's sleep pattern too but I get up of a morning and the itch has gone temporarily so I can gtet on with the day.

I try to post on site and respond in a more positive way if possible as I also think that we all have to attempt to make the best of life with PBC. I did once read about how things can become in PBC but I take the same stance the hospital consultant took when I saw him after he diagnosed me and I'd bee taking urso for 6wks., mention it 'could lead to transplant' but as I notoiced, he didn't offer anymore information. I sometimes think basics are by far better as with PBC we never know which way it could go if we are diagnosed pretty early.

I do agree that anyone with very abnormal LFTs and the GGT is normally raised and an abnormal blood clotting system due to PBC it would be the case of knowing what might happen or could happen with any surgery. At the end of the day any form of surgery can be with risk and even someone out there who has not got PBC could experience great blood loss and be in a serious state in surgery.

[Karaliz in reply to Hidden]

A positive approach is always the best way as you say. Your sentiment of not wanting life to revolve around PBC would be shared by every single person on this site I believe. In fact I've always admired the strength and resilience of the contributors to this forum ..... Most of us seem to be managing work, raising children, families and a myriad of other commitments alongside coping with a chronic liver disease and in many cases, other health issues.

In the early stages of PBC there seems little point in dwelling on "what if", particularly if one responds well to Urso. My point really concerns those of us who are in a very different situation.....ie non responders to Urso with advanced disease. In our cases we must plan for the future and be armed with as much knowledge/information as possible so that as things deteriorate further we have prepared ourselves as much as possible. As far as I can see this is not being alarmist, just sensible. It also allows for living our lives as fully as possible, just as you and all the posters advocate doing !!

I think we've thrashed this subject haven't we !

Cheers for a good week,

Karaliz

[Hidden in reply to Karaliz]

Hello again Karaliz.

Think we have both got the point and as pointed out we all have our opinions and also the same 'goal' at the end, to attempt to overcome PBC as much as we possibly can.

Likewise I think there are some interesting points made on this site. I like the fact that someone can pose a question or suggestion that may help and in by doing so if it gets closer to an answer then in the long run it might be of some use.

The one thing that despite whatever stage we are at with PBC is that we do all understand each other. I find even my own family, nearly all the small one that I have got simply shrug PBC off and just assume that taking the tablets every day is the solution to keep it at bay. Wish it did work like that but we know different.

Kind Regards.

[Karaliz in reply to Hidden]

Exactly ! There is comfort to be had in a community where people are dealing with similar issues and where we are all jogging along the same path, albeit some of us more slowly than others !

Take care Peridot.

[mardot]

Hello, I have had PBC diagnosed now for about 2 years, have normal lft's etc. I had a total knee replacement in April this year, and have had no adverse effects either during or post TKR. everyone is different though, and i hope you go well when you eventually have your TKR.

Cheers, mardot

[hotdog]

Dear Robert

I thank you for your reply. After waiting 3 years I saw another highly professional surgeon Professor Chetty and I underwent TKR last week and it was highly successful. He was amazing and fully understood PBC and I was treat accordingly allowing for this with spinal anaesthetic to avoid as much upset to the liver as possible. I only wish I had gone to him in the first place. So wish others who need to have TKR just to make sure they have an understanding Surgeon who knows about PBC. So many professionals still do not have the knowledge. I thank you also for the support you have given to us all in th last years in dealing with this condition and our many queries. With kindest regards to you and your team. God bless you all xx