Hi to you All,

[Brummi]

In January 2011 I was diagnosed with PBC. After visiting the liver clinic at the Queen Elizabeth hospital in Birmingham for 2 years in June 2013 I had a liver transplant. Maybe what I am trying say is I can relate to nearly all of the sytoms on here. Apparently I had been ill for years but you know how men are I just thought nothing of it and shrugged it off. One thing I have to my advantage the QE hospital have a system where I can acess my records so I find that useful to keep track of my readins aqnd my test results. Although I'm 65 I have never felt better, not quite there yet but getting there. I am willing to chat to anyone about my illness, so please ask if you want to know about anything. Good luck everyone..

[ranrace]

65, liver transplant and upright. Congrats sir!!! Being a strong male, I spent the last 4 years down playing my problems. Now days I'm extremely pro-active. Show up to appointments early, so I can study my notes and make copies of test results for all the different doctors for their records. Have a health journal that I write notes in such as blood pressure readings, what I ate and how I feel afterwards.

Do you or did you have PBC? Where there any overlapping diseases?

BTW Welcome to a great group and wealth of knowledge and understanding! I'm new around here but feel very comfortable venting, asking, learning, and maybe giving some advise on here.

Randy

(North Carolina, USA)

[Brummi in reply to ranrace]

Hi..Yes I have had some minor problems but I will not let them get to me. There was another problem of my pancreas being enlarged which had to be dealt with. The steroid tablets I took after the operation gave me Diabetes, the major thing is I am alive to moan about it. Arriving early is a good thing, the hospital I attend allow liver patients to have access to their records on line. I can study and compare all my readings which is a great idea. It was PBC I had ,I was actually given 2 years to live and when the old liver was taken out I got told maybe 6 months at the most, I hope that you get sorted real soon. As I said to my consultant I still have a few lady friends to take out to dinner.. Just be positive at all times , if you want to know more please ask...Take care and keep in touch

[Val02]

Hi - thank you for sharing your story.

Could I ask you about your comment of taking steroids and getting diabetes?

I have recently been on a course of steroids for ten days for my asthma. I have developed a uncontrollable thirst and a racing pulse. I was wondering if this is how it starts or it's just because I've been very unwell. I crave water day and night and drink between 4-6 litres over a 24 hour day including waking up at night to drink.

Any comments would be appreciated.

[Brummi in reply to Val02]

Hi Val02, One thing I never knew until I started taking the tablets was they may give me diabetes, if they do it usually goes after a few months. The thirst can be for any reason, as for your pulse sounds like you need to avoid stress. It's very understandable for you to be a bit stressful, the water you drink is good for you. Just to make you smile when I first started steroids I started to devolope breast and my hair grew . All I could say to the consultant was desperate the tablet and give me the part that grows hair , I only took the tablets for 3 months so all is back to normal.

[PCBnPBC]

I went to what I called a well mans check up in Dec 12 by Feb 13 they realised I had a totally chirross liver and PBC

It then took 9 months to see our local specialist who sent me to Newcastle Freeman who put me on transplant list straight away. I originally thought I was becoming Grumpy, Itchy,Bad tempered, more tired due to being 59 years old and expected Dr. to suggest a routine of diet and exercise (I am <WAS> 5'8" and 10 1/2 stone and reasonably fit and agile. ) Now I have about 22 pills to pop each day, feel confused, without energy or any drive, can and do sleep for hours during the day, have handed in driving license (before they took it) starting to swell up with fat ankles and pregnant belly, fortunately one of the 22 a day is Citalopram (happy pills) , along with now understanding why / how / etc. we can laugh at me and my craziness, mind you trying to run a 5* Gold B&B causes a few odd moments - think Faulty Towers on acid. All I want for Christmas is a new liver! serious concern is how bad it is likely to get before I reach top of transplant list, perhaps we should start a list of crazy things we have all done..... In hospital I have seen a patient calling police as she was terrified the staff were trying to kill her, I first realised something was terribly wrong when I threw my dear wife's new jacket, new Kenwood mixer and 1 litre of yoghurt all over these in the bin for no reason I could recall....Doctor is not great, .we have to call for blood tests, and pass these from local Dr. to Newcastle as he either is too busy or dare I say it uninterested, must see if any other Doctor might want to take an expensive patient on (Rifaximin alone costs £250 per month off their budget - I would not want me as a patient! if money was scarce) Best quote from Doctor was Charlie Charlie Charlie, I have looked at your records, you have not been to see this surgery 5 times in last 10 years and you have been 7 times already this year, (he thought I was having difficulties with the diagnosis of PBC) I must have been 50 times this year for bloods, immunisations, collecting prescriptions, the surgery is almost my second home, and I would be very happy never to step inside ever again, I prefer my main home!!

I guess what I am saying is well done Brummi, and further good luck to you, we all need to keep a positive outlook, our sense of humour, be patient and use the experience as a learning tool. Hearing from those who have made it post transplantation gives us all hope that we will be there with you soon!

[Brummi in reply to PCBnPBC]

Hi PCBnPBC, you sound just like I have been, but why surrender your licence. 12weeks after the open I was driving again and I drive for a living ( aircraft push backs ) . Always be positive, try to stay stress free. My sense of humour, one of my assets, even in the anathestc room there I am going in for major life surgery the surgeon looked down at me as I lay on the trolley " Good after Gordon" he said " Do you know why you are here " Yes I said and it's not for a vasectomy. Whilst awaiting for my lift home I decided to have a meal in the hospital restaurant I had a meal of liver and onions . One serious point I would like to make is that your wife will have the hardest job in the world, she will be your carer for a short while, with my gf the occasional box of chocs and flowers are a superb answer. Feel free to ask anything you want and I will answer you in a trueful way...All the best.

[PCBnPBC in reply to Brummi]

My Hepatic encephalopathy can come on really strong, after surrendering my license I brought an invalid scooter, my consultant suggested I should not even use that (max 8mph) I have a welly boot that shows the width of my chain saw blade, and boot still waterproof, about 100mseconds or 1/2" away from removing toe(s) so no more dangerous machinery for me until post transplant. As for wife, she is so caring a carer she really rocks, she works so hard at our business, our children (we have had 9) and still has time for me, she really is something else, would be lost without her.On subject of bloods, do you know where your Biliruben and serum albumen levels were at the point they elected to perform the transplant? also do you know where your UKMELD score was at over the 2 years prior to transplant (I understand we start on list once you are 49 UKMELD and become top of list / urgent at 62 UKMELD )

will keep in touch.

[Brummi in reply to PCBnPBC]

IHi, One good thing about the hospital where the transplant was done is they gave me the code to get into my medical records. I shall go back and trace these and let you know. I'm not sure if they go back two years as this is a recent thing but I will check. Please understand there are things happening in the background concerning the surgeon. For reasons as you will understand if I give you his name look him up on his web site Dr Simon Bramhall . I will get those figures for you.

[Brummi in reply to PCBnPBC]

Hi again , My records do not go back 2 years as this is a new system however 12 months prior to transplant Albumen was 36.00 and Biliruben was 36, no info on UK MELD. As I have said this started as a trial but looks as though it will go nationwide. It also has records of letters sent to me and dates of future appointments.

[Calogia]

Brummi - I was diagnosed with stage 4 pbc two years ago. I get ultrasounds every 3 months and an MRI every year. My question is what made them decide to give you a transplant? I keep wondering why they don't suggest that to me since I have cirrhosis and nodules are present.

[Brummi]

Hi Calogia. The reason the decision was made to give me a transplant was the fact the readings from the bloods taken was not too good. Please remember that no two people are alike, I had been I'll for years but as a typical male I shrugged it off?. I had been given a life span of two years, when the affected liver was taken out I got told I may have 6 months at the most. My treatment was done at the Queen Elizabeth hospital in Birmingham UK. Without a doubt I saw at first hand why they are one of the best in the world. On saying this I still have a few problems, but nothing major and no signs of rejection which is good thing. If you want to know more please ask..

[Calogia in reply to Brummi]

I just worry that at stage 4 it will turn into cancer before I get a transplant.

[Brummi]

Have not we all have a chance of that, I'm sure the hospital will not let it get that far...