Not another stroke!

[Julez1961]

Hi all,

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

[Shiloh119]

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

[Julez1961 in reply to Shiloh119]

Thank you, sometimes it is just that my body has gone through enough. I hope there is an answer today.

Julez

[Oidra]

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.

[Julez1961 in reply to Oidra]

Thank you me too, I'll let you all know how I get on. I'm feeling a bit fragile!

[Macushla]

So sorry to hear you are going through all this. Will be thinking positive thoughts for you!

[Jude1]

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

[butterflyEi]

Hi julez1961

I hope you have better news today from the Professor.

Wishing you all the best

[Karaliz]

All the very best to you Julez....thinking of you and hoping all went well at your appointment.

Thoughts and best wishes to you and your family.

Karaliz

[Julez1961]

Thank you all, I need an MRI on my brain an ultrasound of my liver and I had a lot of blood taken. We review that then go from there.

It is never just easy with PBC.

I'll keep you posted and thank you all for again for caring for and encouraging me, I was pretty low last night.

Julez

[Karaliz in reply to Julez1961]

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.

Karaliz

[Julez1961 in reply to Karaliz]

Thank you it means a lot.

[Alley27]

Sorry to hear this, hope everything goes well and I will keep you in my prayers xx

[Julez1961 in reply to Alley27]

Thanks x

[Hidden]

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?

[Julez1961 in reply to Hidden]

I'm not sure!

I'm 54 years old and yes on the list but not high priority

[Hidden]

Sorry rest of message meant to say that it must be very scary for you .are you in England?

[Julez1961 in reply to Hidden]

No I'm in Australia

[Jackie71]

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.

[Julez1961 in reply to Jackie71]

So sweet now I'm crying, but in a good way.

Because you all understand.

[Jackie71 in reply to Julez1961]

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.

[Julez1961 in reply to Jackie71]

I've always been so positive been when you have had as many other things go wrong as I have lately you just get frustrated.

It was a brief hissy fit, I'm good now.

[posh]

Julez,

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.

Posh

[Julez1961 in reply to posh]

Thank you, no I'm not a member, I don't feel anxious, I feel frustrated that we can't get some answers as to why all these things are happening to me.

[Calogia]

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!

Callye

[Julez1961 in reply to Calogia]

That's the thing, I feel the strokes etc will stop for me if and when I get my transplant but the team don't think I'm quite at that stage yet.

It is frustrating.

[Jojowen]

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.

Hope you feel better today!

J

[Julez1961 in reply to Jojowen]

Thanks Jojowen

They just won't budge here.

As my daughter says he looks at you with a blank face.

I have become angry with the encephalitis and I say things I don't mean or even know I'm saying and I feel like I'm not me any more.

[Calogia]

I agree with jojowen. Keep pestering them, my doctors always talk about when the quality of life is unbearable, it's time for the transplant.

[Julez1961 in reply to Calogia]

Hi Calogia

I need to meet your doctor!

My quality of life has been unbearable for years.

[Calogia]

Are you in the UK or the states?

[Julez1961 in reply to Calogia]

I'm in Australia Calogia

[Calogia]

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.

I just wait.

[Julez1961 in reply to Calogia]

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.

Please keep well and look after yourself.

Julez

[Calogia in reply to Julez1961]

You too Julez!

[mumofthree]

Hi Julez1961,

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.

You and your family are in my thoughts.

Cheryl x

[Julez1961 in reply to mumofthree]

Thank you Cheryl,

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.

OK enough of my frustrated ranting.

Thanks for your kind thoughts.