My backstop is I have had Undifferentiated connective tissue disease for many years & self managed it. That was until I thought I had the flue. It wasn't it was Sepsis Sepsis shock and legionella pneumonia that was mid 1999. My partner saw I was acting out of character & took me to put of hours Dr. I was blue lighted to hospital & went straight into ITU. My partner & 2 adult children were called in to tell them to expect the worst. I had my own large room & a 24/7 nurse at all times. I owe my life to the specialist treating me. I was in a coma with 17 bags of fluids being pumped through me I was also intubated. How traumatic for me family to see me like this. When I was transferred to a ward I had intense physiotherapy as I could do nothing. Like a baby had to learn everything. That's when my Undifferentiated connective tissue disease kicked in big time. My immune system attacks the good organs not the bad. It has left me with many issues. I have had scans of all my organs as all are affected. I have good care from my gp & various specialists
I have no energy & have to pace my self & rest lots. I walk daily with my little doggie & eat healthy. I grow all my own salad veg & fruit. No nasty pesticides
I do have flashbacks & can remember lots of what happened.
I have had a fibroscan in February as my enzymes were very high. I am awaiting to see specialist end of June. If it was serious I feel I would of heard by now so am going on the theory no news is good news. I have already learnt from this site that salt is a no no.
I take vit d
Vit c
Milk thistle
& omega fish oils
Also thyroxine
Whuch I believe are ok to take
What can I expect from the specialist when I see him
I do know everybody is different
Just looking for advice
Thank you
Written by
Louby1954
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Hi Louby and welcome to the forum, sorry to hear of your troubles - you and your family have certainly been through the mill and I hope you hear some feed back soon from your doctors as to what is going on (my hubby has cirrhosis due to auto immune liver disease so we know what that's like to live with when you have the fatigue etc.).
One thing that jumps out from your list of things you are taking is Milk Thistle - many forum members have been told by their hepatologists not to take this as it is untried and untested and any claims of potential benefits are largely anecdotal. There is the possibilty that this and any unprescribed supplements could affect your liver further and expecially in the diagnostic period you don't want to be taking something that could further muddle the results of tests.
Normally at a first appointment with a specialist they run through your patient history and what brought you to requiring that appointment. They normally run blood tests and other basic tests - height, weight, BP etc. Then its a two way chat - prepare for it by getting yourself a notebook for all appointments. Jot down any current meds including OTC, supplements etc. Any/all symptoms and then a list of your questions you want to ask. Obviously you'll want to know where you are at, plan of action etc. The BLT has a page on questions you might want to ask your doctor which may be useful to you in planning for your appointment - in fact they have a whole range of stuff on diagnosis and care and the question page it in there. britishlivertrust.org.uk/in...
Good Morning & thank you for your reply which is very helpful. My gp prescribed me a tablet to help me get off to sleep as my brain comes alive as soon as my head hits the pillow. I refused it! It would have interfered with my heart medication.He knows how I feel now about taking toxic drugs. I do take nififidine as have severe raynaurds. My gp actually struck me off his books as he claimed I shouted at him & blamed him! After a meeting with him & practice manager I explained I raised my voice out of frustration as Post Septic Shock is on NHS website & he didn't believe it there was such a thing! Also I didn't blame him I was trying to educate him as I didn't want anyone going through this on their own, as I had to. Sepsis trust were amazing & fully understood thank goodness. I thought I was going mad.
He said he had no notes. When speaking to practice manager she asked me a date. I gave it to her and low & behold she had the letter on the system! My gp is very helpful now & listens.
Sepsis keeps giving. I stopped them from amputating my index finger as it had gone black. Opted for 4 horrid infusions instead. I cannot fault my local hospital. I am a positive person, do have a crumple button. Mainly out of frustration that I am now dealing with. I am at present painting my shed. It will take months as only do a little bit at a time. & rest lots. Someone else mentioned about Milk thistle. I will now not take it. Just vit D & vit C & omega fish oils which my rheumatologist has agreed with.
I shall make a list of Q&A & ask for a plan of action. Most of my family & friends support me. Those that saw me in ITU. Few who didn't think it's all in my head. I raised awareness & funds for Sepsis trust for all their help
Have a lovely day with hubby & thank you once again for being very helpful x
Best bit of advice l can give you is give up the milk thistle. There are no proven benefits and is likely to add damage to the liver. Just eat and live healthily and allow your liver to rest rather than making it work harder to process rip off suppliments which claim to cleanse the liver.... they do anything but.
Sorry to hear that. Hope they can & will help you. I am expecting same diagnosis. My gp thinks it is build up of medications & bilbarium levels as to why my liver is not releasing toxins. He is only a gp & not a specialist so won't quite rightly try & explain it all to me. Enjoy your day best you can x
Hi Louby Katie has just about covered everything I would stress that you write down as many questions as you can think of before hand because we all walk out saying dam it I wanted to ask them about that 🤣. I must say I have never heard of Undifferentiated Connective disorder but what ever it is it sounds like it’s put you through the mill , good luck in the future 👍.Stay Safe All
Thank you. UDTD is where my immune system attacks the good bits not the bad. I cannot walk to far, due to weakend muscles. From tip to toe if effects me. I usually find a solution to most things. I am a avid gardener I now have employed a lovely gardener. I cannot iron. My friend up road does it as a profession and at very good rates. I cannot clean windows a window cleaner comes monthly. As I now get DLA it comes in in one hand & goes out other. Providing I rest lots & get a decent night's sleep I just get on with things little by little. I am an early bird anyway. Best part of day. Sitting in garden watching sun rise listening to early morning birdsong. So peaceful.Flop into bed by 9pm. Have little more energy b4 noon and usually take my little dog for walk. There are days when I cannot get out of bed, then I read & rest
Sun is out to play again crack on painting shed. Will take probably a month but will Brighten it up as going to stencil flowers on 🌞😎🌻
What a lovely response, thank you for the information, it’s so nice to hear someone with a illness and is so positive 👍. Keep up the good work and I hope you shed comes out as good as you hope 🏰. Stay Safe All
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