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11 replies to this topic

#1 judyt

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Posted 28 March 2012 - 03:40 AM

Hi,

As you have all read here lately, I have been in hospital most of February with a small bowel obstruction. That was repaired successfully and I am on the mend now, slowly but surely, I hope.

What I have discovered this week since I received a copy of my discharge notes from my general practitioner is that I have Cirrhosis of the Liver and Portal Hypertension. I know that while I was being prepared for surgery there was concern about my liver and they had a specialist on hand in case it was needed. As it turned out I was fine but now I want to know more about what this diagnosis means.

I did not read the notes until I got home and was discussing so many other things anyway yesterday that I didn't have a chance to talk about what this means in the long term.

My cirrhosis is not caused by alcohol or hepatitis so we have to presume that it is an auto immune thing, and what I am wanting to know now is whether any of you people out there have the same or similar problems. I have researched portal hypertension of course, and realise that I am not showing any particular symptoms yet but can't help but think that one day I will.

JudyT

#2 Joelf

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Posted 28 March 2012 - 10:48 AM

Hi Judy,

I'm so sorry to hear that you've been having yet another Scleroderma complication to deal with.

We have some information about Cirrhosis of the Liver and also Idiopathic portal hypertension associated with systemic sclerosis and Sjögren's syndrome which I hope will be useful to you. Also we've recently had a thread Hypothyroidism, primary biliary cirrhosis and scleroderma on the UK forum started by another member, Inkedup. Hopefully, she may be along with some first hand information and help for you.

I'm so pleased to hear that you are on the mend now from your bowel obstruction surgery, albeit slowly and I do hope that this latest problem with your liver will be the last thing you have to suffer with for a long time!

Best wishes,

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#3 Amanda Thorpe

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Posted 29 March 2012 - 01:34 PM

Hello Judyt

My goodness me, I hope you never go on to develop symptoms of either liver problem, I think you have enough already!

Take care.
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#4 debonair susie

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Posted 30 March 2012 - 10:45 AM

Hi Judy,

I'm with Amanda and Jo, on this front: You don't need more to deal with and I'm hopeful they are incorrect.

My rheumatologist had noted, though never said anything to me, that I "could" have Primary Billary Cirrhosis, but then she noted
a reverse decision at a later time...agin, never mentioning it to me; I only found out about that through my present rheumatologist,
who was reviewing my previous rheumatologist's notes.
In YOUR case, I hope it also happens to be a case like mine, Judy. Please keep us in the loop, won't you? :emoticons-group-hug:
Special Hugs,

Susie Kraft
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#5 judyt

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Posted 31 March 2012 - 03:40 AM

Hi Susie,

Yes that would be nice wouldn't it. I am not stressing about it, I have had a "deranged" liver for a long time and nothing seems to have become worse over the years. However, this is the first CT I have had for a while so maybe something is happening. Whatever! it will either show itself or it won't.

Thanks for your thoughts.

JudyT

#6 judyt

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Posted 07 November 2012 - 04:01 PM

Hello again,

I am back on this thread after several long months because I have finally received a more or less definitive diagnosis of my liver derangement.

When I left hospital in March I was pressed by the surgeon to remember to do something about the suggestion from the CT that I have cirrhosis and portal hypertension. In the meantime, we have moved house from one beach to another, had to change general practitioner and then settle in to a slightly different routine.

Anyway, I now have a new general practitioner in the city and she suggested I see a young lady Hepatologist who works with the Liver Transplant team at Auckland City Hospital. Seemed like a good suggestion to me, she is younger than me (so won't threaten to retire any time soon) Internationally experienced, having worked in London until fairly recently and lovely to talk to. Her initial finding was that there was no clear diagnosis between P.B.C. and Autoimmune Hepatitis so the next step was a either liver biopsy or just continue without treatment and see what happens.

After some hard thinking I decided on the Biopsy. It wasn't so bad at all, it was done at a Radiology facility with Ultrasound guidance and I was there from 8.30am until 1.30pm so I was well cared for. This Monday I had a follow-up meeting with the Hepatologist and that was quite interesting. First of all the biopsy didn't show any cirrhosis but that could be because the Radiologist picked a spot which was clear!! but it did show P.B.C rather than the Hepatitis. So the upshot now is that I am to start on the only medication available and I will do that today if the Pharmacist can supply the meds. Sometimes he has to order unusual things and wait till the next day for them to arrive.

Apparently there are three things which can happen when I am on the Med.

1. I won't tolerate it and will have to give up.
2. I will feel 100% better and won't be able to believe my luck.
3. I will tolerate the med but won't notice any difference.

Guess what I am hoping for!!!!

Actually feeling 20% better would be a bonus!! I am soooooo tired these days that I can hardly manage to walk far. I have just received a disabled parking permit which helps but even walking around the house is exhausting. I am so pleased we were able to find a home with no stairs. Reading one of Amanda's posts yesterday about being on line in her jammies and ready to go back to bed put me in mind of my usual self these days. It takes me all morning to get myself fed and dressed and often I am at the computer in my robe still thinking about making the next step when it is nearly midday.

Will keep you in the loop about how things go.
Best wishes
Judyt

#7 Amanda Thorpe

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Posted 07 November 2012 - 04:23 PM

Hello Judy

The 3 options made me laugh, we having my pacemaker I was told that 30% of people never feel any better. Sure 70% success rate is great but terrible odds for those actually in the 30%.

I must admit I would be miffed to be better but not feel better, would seem kinda pointless...

I am hoping you are and feel 100% better and we can celebrate this with so so keep us informed!

Take care.
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#8 Shelley Ensz

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Posted 07 November 2012 - 06:58 PM

Hi Judy,

I am going to hope that your answer is behind Door #2. Wouldn't it be beyond fabulous to feel 100% better?!

However, I think that 100% is probably for people who have nothing else wrong with them, and are suffering from liver problems alone. So you might be forced to settle for less than a 100%. But I agree that if you have any improvement at all it will be terrific!

:emoticons-line-dance:
Warm Hugs,

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#9 miocean

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Posted 07 November 2012 - 08:22 PM

Judy,

I am glad to hear the biopsy process went well and that there is a chance that you will be feeling a lot better with the right medication. I will keep my fingers crossed (not that I can cross them :unsure:) that you will get #2.

Same as you and Amanda as far as "choices," with the kidney I was told, it might work immediately, it might not work for a while and I would still need dialysis until it did, or it might not work at all requiring dialysis until another came along. I got the best of these and have been very fortunate.


Thanks for letting us know,
miocean
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#10 Joelf

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Posted 08 November 2012 - 06:20 AM

Hi Judy,

I'm so pleased that your biopsy went well and is now behind you; thankfully, I am still able to cross my fingers, so I've got them and my toes crossed for you that the second option occurs!! :emoticons-yes:

I agree with the others though; any improvement will be a bonus for you and I'm not even going to contemplate the first option!

Best wishes to you,

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#11 judyt

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Posted 08 November 2012 - 06:24 PM

Just remember your primary school maths Shelley - 100% of 0 is 0!!!! When I say 100% better, I mean better than I was, which is about 20% of average for somebody my age!! 100% improvement is probably too much to ask for but something would be nice.


I have started the medication and so far so good with tolerating it so will keep my fingers crossed.

JudyT

#12 debonair susie

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Posted 09 November 2012 - 10:48 AM

Hi Judy,

I only just finished reading the latest of your last couple of postings; I am holding the very best thoughts that you will continue to tolerate well the medication you just began.

As all have alluded to, you are a great woman of such inner strength and I am awe-inspired by you and your attitude, which has worked to bring you where you are today.
I am so pleased you have the lady doctor you do and know that she will do her best for you. I am relieved you had the liver biopsy so they could address this properly.

Rest assured, we have you in a very special place in our hearts :emoticons-group-hug: and REALLY appreciate your keeping us apprised of the recent findings.
I am with you, Shelley and others...may you be the very best you are able to be, concerning your health and may you gain by leaps and bounds.
Special Hugs,

Susie Kraft
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