I unfortunately had another stroke last Tuesday night, I got all tired and uncomfortable watching TV upstairs so went to bed. My husband decided for some strange reason to make a banana cake so down I went alone it was only 9pm. I got in to bed started shivering and felt hot and flushed, I lay there in a lot of pain for about 30 minutes. My husband came downstairs and was taking to me, next thing I was incoherently mumbling away, as I'd just had a TIA or Mini Stroke 6 months ago he knew what was going on. The ambulance came I don't remember a thing until about 30 minutes later they were putting me in the ambulance. I was talking on the way to emergency, then it happened again in the ambulance.
This time they aren't convinced of a TIA as I have hepatic encephalopathy from end stage PBC. I have been on Rifixamin and Lactulose for over a month now and they aren't working.i am coughing up phlegm now and my body hurts head to toe. I had to ask my husband to let go of holding my hand yesterday as it was agony.
I am just managing to exist at the moment and I am just fed up.
I see the professor today 12th May to see what our plan is, my family are too afraid to leave me alone but I can't have them watch me all day.
It is frightening but I think my transplant (if they get me a donor) is imminent.
Fingers crossed for some good news tomorrow.
Julez
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Julez1961
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Sincerely sorry to hear this julez1961. I hope that your meeting with the professor tomorrow goes well and that you can find some respite from the pain. I will be thinking of you. Love and light to you. Xxxx
I was so sorry to hear your news. Having to cope with PBC is enough without this worry. I hope you have better news tomorrow and they can get your pain under control.
Sorry to hear your news. Hope today you have woken to some good news. Keep fighting and smiling. My regards to you and your family. Thinking of you all. X
You sound a very strong lady who has done a wonderful job negotiating a pretty torrid PBC journey... I feel sure relief is not too far away Julez... Hang on , we're all behind you.
Hi jules is it the p.hypertensions causing pressure on your heart or is it unrelated? Hope you don't mind me asking but how old are you?and were you already on the transplant list?
So sorry to hear that you are clearly going through a lot and it brings it home just how vulnerable that we all are, PBC is a rotten illness that I am quite sure none of us deserve but seems to be out lot. Hopefully you are in the best place to be sorted out. You have to try and remember that your family are just worried about you and their way of feeling helpful is to be with you unfortunately we often have to be strong for our families because they are more frightened than we are.
Take care and everyone will be thinking of you and wishing you well.
We so all want you to get through this because deep down we know we will all be heading in the same direction at some point. My understanding of transplants is that it is the way to go so try and think positive thoughts.
Can I ask if you are a member of the PBC Foundation? They have a 24 hour helpline service if you need any advice or support for you and your family. Is free to join and they have experts in their fields such as Dr. James Neuberger who they can ask for information and guidance from.
It may help to chat to someone who understands your anxieties.
Julez - I'm so sorry. We spoke last week and I can't believe you have to go thru this again. I know several people here in the US that have had the transplant and besides the initital recuperation period all are doing well. Symptoms are gone and energy is back. I will keep my fingers crossed!
So sorry you have to go through this. When I was first diagnosed I was angry and thought to myself that there was nothing to learn from being diagnosed with a chronic disease. I got really sad and the energy loss, aches and pains felt overwhelming and hopeless. Now, a year later I am trying to think differently, I am noticing that being sick has given me a diffrent perspective. I am grateful for everything I can do, I don't let my job take over my life and I am learning how to rest. I am still not happy with being sick but I am learning something and - at least that is something. I hope you'll get through this and then be able to think; I learnt something, now I know...
Keep pestering the doctors about your quality of life! If they don't have anything else to offer they should bump you up the list.
oh I don't know what their criteria is for a transplant but here its the decompensated stage or jaundice or poor quality of life. Althought for poor quality of life I think it has to be pretty severe (like yours).
I was diagnosed at Stage 4, 3 years ago. Apparently my primary doctor missed it. Even though I had symptoms and blood tests had abnormal liver enzyme levels she always attributed it to taking tylenol (which I rarely took). Finally the itching got so bad she rans tests on my gallbladder which came back normal. I went to a Gasto doctor they took one look at the blood work and diagnosed me on the spot. I then had a lever biopsy which showed me at state 4.
I take URSO but it hasn't proven to do anything for you once you start taking at stage 4.
Oh that is terrible, some Doctors shouldn't be working!
I was diagnosed over 10 years ago virtually not symptoms except idiopathic pancreatitis but apparently my pancreas was struggling because of my liver.
Five years ago I went from stage 1 to stage 4 in 3 weeks. I so ill I went to the hospital for day surgery and came out 2 1/2 months later. It was a long day!
I was top of the list and ready for my new liver then my own liver kicked in a little bit. I wish it never had.
I haven't been on here for a few days so only just read your post. Talk about being kicked when you're down. You really are having a tough time aren't you!!!
Some doctors just don't deserve to be in the profession and have no bed side manner. I bet they wouldn't stand for it if it was a loved one of theirs that was being treated in that way. Is there any possibility of being transferred into the care of another Specialist?
Keep positive, hopefully it won't be too long before you receive some good news and start feeling better really soon.
I don't know how many times I've said to them that if I told you you have to give up walking the dog on the beach outside our house and you can't do more than an hour a day at work, (especially when it is my own business.) like they keep telling me, how would you feel?
I'll just keep having numerous expensive tests that are becoming unaffordable and being told I need to see the psychologist because am getting tired and grumpy and it is affecting who I am!
I just say I'm not depressed I'm frustrated that all these things are happening to me and I go to the hospital and never get solutions to fix it.
I'm just told to try and make the most of my life.
It is not them that is being affected by this illness and the inability to function and get on with life it is me. My professor still went skiing in Switzerland I can only dream.
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I have not posted in such a long time! I was informed I had PBC when I was 65. I have been taking Urso. now for 4 years.
Fed up with my family!
9 years since they first found the M2 antibodies, 16 years since my alk phos started being elevated. My story.
Just found out I have PBC
